tag:blogger.com,1999:blog-89848236244314203982024-03-05T01:33:50.773-06:00CamThe journey of a young boys' life living with muscular dystrophy.Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-8984823624431420398.post-41803482771470002932017-04-22T19:10:00.003-05:002017-04-22T19:11:46.015-05:00Time to begin againWell, it has been a very long time since I have felt inclined to write. I'm not sure why, I have been asked time and time again to start posting to the blog again, yet I never did. Now as we are closing in on a time that will be very difficult for Cam and all of us I decided to start back up for two reasons, first and foremost to keep all of our loyal supporters in the loop and two I'm hoping to find the outlet I used to in writing about things. Overall Cam has been healthy and continues to be a positive happy kid, well now teenager AAGGGHHHH so hard to believe!!!! <br />
<br />
As some of you know, and most probably don't, Cam is scheduled for a very major surgery on May 11th. He will be having a full spinal fusion with instrumentation and possibly multiple osteotomies. I know, a lot of really big overwhelming words, trust me that is how we feel!!! This is a procedure that they have been discussing with us for about two years and about 8 months ago the decision was made that we were at "that" time. From there Cam decided he was ready to go forward with this in hope to alleviate the chronic pain he has been living with and so we began what we thought would be a pretty straight forward process.........Not so much!! As I said 8 months ago!!!! I made the call to the surgeon that Cam was ready and lets get the ball rolling, well in true medical fashion things did not progress quickly. This Dr. had not given approval, the dietician left and now the new one doesn't give consent, etc etc etc. Meanwhile Cam underwent a sleep study and they determined he would greatly benefit from using a bipap machine at night. Let's just say that news didn't sit well this him, but can you really blame him. Another piece of equipment, another reason he's different, another thing to make something as easy as sleeping more uncomfortable, UGH. So on we pressed and scheduled a second sleep study to determine his settings and mask style that works best. We narrowed things down and the following week they delivered everything and we began the first of a few sleepless nights. Anyone that knows Cam knows how stubborn he can be and this was not different. Even though it probably helped him sleep better and wake more rested he would never in a million years admit that!!! After about 3 months we are in a good routine with the mask and machine now and he uses is successfully almost every night :)<br />
<br />
So back to the surgery with lots of big words......<br />
Basically because of Cameron's disease and the fact that he sits all day everyday his scoliosis has progressed to a point that his team of doctors feel that we need to address it in a serious manner. The only solution to this is the surgery I mentioned above. At this point the curve in his spine is at a place that it can start affecting his ability to breathe efficiently and his organs to function properly as well as he is living with chronic back pain. No 14 year old should have to live with chronic pain, it is gut wrenching to watch him wince when he moves wrong or not be able to find anywhere comfortable to sit after a long day and worse yet is seeing him miss out on so many things that he enjoys because he is in too much pain to go. We are really hoping that this gives him the relief he deserves, but like everything else there are no guarantees. So the surgery in a nutshell will take anywhere from 8-12 hours (a very long time especially for someone of Cam's size), they will be starting at his torso with anchor screws and continue up his spine placing a screw at each vertebrae with a metal rod in between all the way to the base of his neck. During the process they will remove chips of bone and place it over the screws in order for the body to recognize a broken bone and begin the healing process. The final result will be a completely solid bone running from his torso to the base of his neck. While this will limit some of his motion we are hoping the benefit of support will outweigh this. The possible osteotomies will come in if they need to cut some of the vertebrae in order to straighten the spine enough to make the surgery successful. The recovery will be long and slow and will take up much of Cam's summer but he wanted to get it done and be ready for high school.<br />
<br />
I will try and keep up with the blog as we go through the process to keep everyone up to date. As you can imagine we are all very emotional and nervous about whats to come. We all deal with things very different but are trying to face this as one and trying to stay strong for each other. I'm sure we will continue to have good days and rough days but will take each one in stride. We thank each one of you for your continued support, love and prayers. We will most certainly need them in the coming months.<br />
<br />
<div style="text-align: center;">
<span style="font-size: large;"><b>Remember, wake up and smile each day and be thankful you were given another opportunity for greatness!!!</b></span></div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-57720560343691025632014-08-30T21:20:00.000-05:002014-08-30T21:20:08.173-05:00And then summer was over! (beware:random stories ahead)<div style="text-align: center;">
WOW!! Hard to believe yet another summer has gone by and Cam has started 6th grade. Where does time go? Why do the times you want to last go by so fast...........I feel like just last week we were starting our summer leaving for Tennessee. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Where do I start, so much to say and yet I've struggled finding the inspiration to write..........</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Do you ever meet someone and just know that they were put into your life for a reason???? Well, I will start there because this happened to us this summer. Kevin and Cam were going downtown for what was to be a regular MDA event, taping a segment for the telethon, and spending the afternoon with our favorite MDA staffers and families. Little did we know there would be someone there that fell into our family and Cam stole their hearts the instant they met! There is an amazing fighter named Eric that is fighting his own devastating battle with ALS diagnosed at a very young age. While he struggles with his own medical needs and challenges with his ever changing body as his disease progresses, he reaches out a hand to Cam and our family and offers to help in anyway possible. We began a series of emails with him, and then his brother and then his sister and we must've sent 100 emails back and forth within a matter of days. It was like we had known this family for years, yet some of them we had never met in person before, and I had never even met Eric......it still gives me goosebumps when I think about how I felt about these people from the first message. All of this was building up to Eric's 2nd annual barn dance benefit that we were invited to, and of course would be attending. What we soon found out was that they wanted Cam to be a guest of honor and wanted to surprise him with something. Unbelievable, fighting for you own life and still giving to others, I'm not even sure there are words you could use to describe what big hearts this man and his family have. So the night rolls around and we finally get to put a face to a name and it was like meeting a long lost family member every time we were introduced to someone. All I could think was "where have these people been my whole life?!" We had a great evening and enjoyed meeting all of Eric's friends and family. The night did not go without tears, but I am not sure whether I shed more tears of happiness or sadness.....still a toss up! Thank you Eric for being an inspiration not only to Cam, but anyone fighting a battle. You are living proof that a disease does not have to drag you down....wake up and FIGHT LIKE A CHAMPION everyday! </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
To learn more about Eric visit <a href="http://www.fightlikeachampion.org/">http://www.fightlikeachampion.org/</a></div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0OHp_G4m5qSNlQg5nQN7-IUmZKh6_H9KcGJcUhc9lp-ZSumHf3fF8Yz5Lr05QxKeP1FZ88KZZCPY-G_W5JrJIMJTbsVZXblORmp5U_1yPe4UgIgRwotNY1zKWd0mT21GR2xuLNTb8CAfM/s1600/IMG_2307.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0OHp_G4m5qSNlQg5nQN7-IUmZKh6_H9KcGJcUhc9lp-ZSumHf3fF8Yz5Lr05QxKeP1FZ88KZZCPY-G_W5JrJIMJTbsVZXblORmp5U_1yPe4UgIgRwotNY1zKWd0mT21GR2xuLNTb8CAfM/s1600/IMG_2307.jpg" height="320" width="240" /></a></div>
<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7wwuUYgBhNJL0idgU5MhKjvJuryvFslsjsC6j12IKcCRJVeq1dkxzEa9roOfFF1iD7tHGUzXnx8vFhjuADJWQNeP6ZdwEcDi849Qb3chCfqD418bFBGZCGTy1SVpISgzpsbHjXBybzj8B/s1600/IMG_2309.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7wwuUYgBhNJL0idgU5MhKjvJuryvFslsjsC6j12IKcCRJVeq1dkxzEa9roOfFF1iD7tHGUzXnx8vFhjuADJWQNeP6ZdwEcDi849Qb3chCfqD418bFBGZCGTy1SVpISgzpsbHjXBybzj8B/s1600/IMG_2309.jpg" height="320" width="240" /></a> </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9XIS4oGCar3PMlTwKKBIJDOdU2YZF2v0XH-7lGNxCLpQlQ6iqFwc4E_8ZFnqGmEa8a0wRdEQPl6qDdjg5S-uBR1AZH29CmBxWKui28yDzkcKVcWPu5ZFMmjgKfpI8Ojiu9opS3ZDc9t8x/s1600/IMG_2355.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9XIS4oGCar3PMlTwKKBIJDOdU2YZF2v0XH-7lGNxCLpQlQ6iqFwc4E_8ZFnqGmEa8a0wRdEQPl6qDdjg5S-uBR1AZH29CmBxWKui28yDzkcKVcWPu5ZFMmjgKfpI8Ojiu9opS3ZDc9t8x/s1600/IMG_2355.JPG" height="400" width="300" /></a></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEGdaflSxuRVeN7PE9v-_WxJ_I4juaoSdEt4zYLdi9m-_UvDxa7u79D_OL_KVywkj7nQ_ft2EI_IaWH_TLOCEiGtipI4pH77l1HI-81SDPbnuT1RMKxAh13290G6HWAnwQedpJYPNzclbA/s1600/IMG_2353.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEGdaflSxuRVeN7PE9v-_WxJ_I4juaoSdEt4zYLdi9m-_UvDxa7u79D_OL_KVywkj7nQ_ft2EI_IaWH_TLOCEiGtipI4pH77l1HI-81SDPbnuT1RMKxAh13290G6HWAnwQedpJYPNzclbA/s1600/IMG_2353.JPG" height="300" width="400" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaPNXedGwul2Q8rE3Rq7JtM-TVhwKjqHp_WgdrBByii694CIiyZ8izgiJN2GSg8Gxm6UmCi6nMYLDlAPx5mPXryirJuhW8VTGWsrgy57z59MovZ2FmxculMcg1G0oeSAXABw96oWzWN9b0/s1600/IMG_2350.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaPNXedGwul2Q8rE3Rq7JtM-TVhwKjqHp_WgdrBByii694CIiyZ8izgiJN2GSg8Gxm6UmCi6nMYLDlAPx5mPXryirJuhW8VTGWsrgy57z59MovZ2FmxculMcg1G0oeSAXABw96oWzWN9b0/s1600/IMG_2350.JPG" height="300" width="400" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeB4sMSxYQCAlJy0nsAA8RWQK-edg1TAwbLbjxmmfHXcbp4xbCyIMcaOWjVBg75M9Ae9GhWrst3Q0wUsSrddlOtH1gJI2fOnYePRWgYrDBS5vexAw9skakV17TM5ZNF1ONwJWwOTuMjGS0/s1600/IMG_2351.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeB4sMSxYQCAlJy0nsAA8RWQK-edg1TAwbLbjxmmfHXcbp4xbCyIMcaOWjVBg75M9Ae9GhWrst3Q0wUsSrddlOtH1gJI2fOnYePRWgYrDBS5vexAw9skakV17TM5ZNF1ONwJWwOTuMjGS0/s1600/IMG_2351.JPG" height="240" width="320" /></a> Another gift was brought to Cam this year, seems to be a theme that I am falling in love with :), he was given an opportunity to learn to scuba dive through a program at RIC called caring for kids. For the last 5 month he has spent his Sundays in a pool training to become certified and successfully became a D3 diver. He worked so hard and we couldn't be more proud. He was granted a trip with the program as well as divers from DJ's Scuba to the Florida Keys to dive for 3 days in the ocean!!! Kevin and Cam set off for the airport on August 20th along with 16 other people, including 4 kids with disabilities, dive instructors and RIC staff. They stayed in a beautiful rental house right on the beach and Cam saw the ocean for the very first time with Dad and Victoria by his side. You see, Victoria wasn't going to go but Cam decided at the last minute that "she might not be OK being away from him for 5 days" so, she flew to Florida with them. The next day they set out for Cameron's first dive experience in open water! After a small bout of sea sickness in the water he went with his scubility instructor R (we will refer to this amazing woman as R for privacy) and Dad in tow. Cam completed to good dives the first day and progressed from there. He was so excited about everything he saw and how amazing it was to be "free" Can you imagine what that must feel like for him? Being completely weightless, going wherever he wants to go without feeling like his legs won't take him there, cruising the sea floor with someone watching you who has dedicated hours and hours to making sure his experience was the best it could be, fitting him with multiple wet suits, masks and regs to be sure they fit the best they could, a group of people who want nothing more than for you to come up with a smile. I'm telling you we have been so incredibly blessed, the people that we have had the pleasure of getting to know in the past few months has been so overwhelming it makes me cry just trying to write about it. Cam and R would descend facing each other, she would help him clear his ears, he would give to OK sign and they would continue. She held him against currents and pointed out every cool thing there was to see under that ocean. R you are an incredible woman, Cam does not trust many people, he is tough to crack, but you got him......although I wasn't there first hand to see it, I could hear it in his voice each day that I talked to him and that smile.......in every picture speaks volumes for the experience he had. And to all of you that dedicated your time to teach these kids and take them on this incredible journey....THANK YOU! It is an experience none of us will forget, especially Cam. I just hope you are all prepared to take him diving in the future because he hasn't stopped talking about what he wants to do for his "next trip"</div>
<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixeAaZhY0vcQ6nHwWr_Xq0-MvxOkP-vLa2xZwIHWGa2HS1t-ObFsm5BXgiQL_dULSKT2dC1b-p3BgPlV3xlMgnpSzdwlbX1ePgYhyphenhyphentzjFOANAXjT6r8Ywkm2xgI8LgklxKMsfzZJ7uyfag/s1600/IMG_2352.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixeAaZhY0vcQ6nHwWr_Xq0-MvxOkP-vLa2xZwIHWGa2HS1t-ObFsm5BXgiQL_dULSKT2dC1b-p3BgPlV3xlMgnpSzdwlbX1ePgYhyphenhyphentzjFOANAXjT6r8Ywkm2xgI8LgklxKMsfzZJ7uyfag/s1600/IMG_2352.JPG" height="320" width="240" /></a> </div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJyBtqONVx-_V-jHx-WQ-0qcB4q6KlH9PklPDVCtUVOYnCCvTuSx0QWZTEeHx_-I8jhlPx9gvnhPO3m5jpFcJES_hA_k2_ntOIZA-r3gopqOLDubMyUg3-6jFHSLI993c091Zah2L-m1TM/s1600/IMG_2354.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJyBtqONVx-_V-jHx-WQ-0qcB4q6KlH9PklPDVCtUVOYnCCvTuSx0QWZTEeHx_-I8jhlPx9gvnhPO3m5jpFcJES_hA_k2_ntOIZA-r3gopqOLDubMyUg3-6jFHSLI993c091Zah2L-m1TM/s1600/IMG_2354.JPG" height="240" width="320" /></a> </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Onto Victoria, she hascontinued to impact our lives in incredible ways! She brings joy to all of us each day with her crazy antics, cute face and unconditional love for Cam. She still loves to work any chance you give her and is so proud of everything she does. She is getting back into the habit of school, getting Cam's shoes, walking him to the bus and being depressed all day until he comes home! I know I've said that I knew she would help Cam physically and was amazed at the emotional transformation Cam has made since getting her, what I didn't know is how she would impact me (kind of indirectly). When we went to get Victoria we spent 2 weeks with families, some of which faced the same struggles we do and some who had struggles in different ways. Even though conversation amongst Kevin, Cam and I and the others were limited, I came out of it with a couple of incredible connections to people that I would have never had an opportunity to meet. It wasn't until after we left that I realized I really failed to take advantage of this. I was in a place where I could have someone to call or email that would TOTALLY get what I was feeling, or give advice because they had already been through that and vise versa. Thankfully there is this amazing thing called social media and I could reach out and see about making these connections now that I realized my fatal mistake! Luckily, it worked! Through CCI I have people that completely get what I mean when I refer to a certain frustration or emotion relating to Cam. I also can lend an ear when they need it. One connection I made is to a mom who never ceases to amaze me with her positivity, compassion and love for all children. She has adopted more than one special needs child and would give anything to make sure they are happy and are surrounded by family and friends who love them unconditionally and she inspires me to be a better person everyday. Another connection is someone who I feel like I could see or talk to once in a blue moon and we could pick up where we left off, I hope I never have to test that because I enjoy our frequent messages back and forth, but she has this strength about her that I'm not even sure she knows she has. She has experienced things that no parent should, yet you would never know...she is always smiling and her daughter is a ray of sunshine. I hope these connections continue and that they get as much out of our conversations as I do. My only wish is that we all lived a little closer :( Guess that's a good excuse for a ladies trip........</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-R1ve1nkCi67DE-HB2suYmPyfz75dTGaXQKXItavOxbup2EgeYRaswLNkjKxQMGkkroobw796UCNqVwzor3Syx5qKXjYG7DsrHsgKmrN9SLo_ELiJUl7IQ2fAlGS9l2kx-Kpwi0sNDc0C/s1600/IMG_2199.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-R1ve1nkCi67DE-HB2suYmPyfz75dTGaXQKXItavOxbup2EgeYRaswLNkjKxQMGkkroobw796UCNqVwzor3Syx5qKXjYG7DsrHsgKmrN9SLo_ELiJUl7IQ2fAlGS9l2kx-Kpwi0sNDc0C/s1600/IMG_2199.JPG" height="300" width="400" /></a></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Cameron's health has been good over the summer. He wanted to go back to RIC for day rehab over the summer months so we got him back into that. He was going 2 days a week, much to his disappointment, he wanted to go 3 days. LOL Now that school has started he will continue to go 1 day a week for 3 hours as well has pool for an hour each week. Cam loves to work, he looks forward to therapy each week and can't wait to tell me about what they worked on! As far as progress, he is maintaining, but not making much headway in the walking department. I think the surgery was good for his contractures, but unfortunately Cameron's ultimate goal was to walk again and I'm just not sure at this point that it is in the cards for him, he never gives up though so I have to give him lots of credit. (He is very stubborn and I'm not sure where that comes from;) ) We have seen most of his dr's for the usual gamut of 6 month follow ups and most so far are status quo with the exception of the Orthopaedic Spine doctor. Unfortunately Cameron's scoliosis has become significantly worse in the last year. He talked through some options with Cam, one of them being surgery, and we will re check in 6 months before making any decisions. If the scoliosis continues at the current rate it may be time to intervene, but fingers crossed it stays right where it is. He has been off of his G-tube for about 6 months, but looks like that too will be coming to an end. He is not gaining weight at the rate they would like and just seems to be getting taller and taller. We meet with his dietician in about 2 weeks and I am pretty sure she will deliver the devastating blow that he has to go back on nighttime supplements. UGH........he has been doing such a great job with eating and trying new things, I sure hope this doesn't send us back down the anti-food road! I have been trying to ease him into the idea by talking about it a here and there, today I cleaned his room and plugged his pump back in by his bed in hopes maybe we can EASE into this........for anyone that knows Cam, you know I'm just teasing myself, there will be no easing......bedtime tonight should be interesting :)</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I guess I will leave it at that for now, lots of random thoughts but it's so hard to catch up when it's been so long! Guess that means I should write more often.............</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="font-size: large;"><b>Just remember wake up everyday and SMILE :)!!!!!</b></span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-40118829870923450482014-06-16T19:44:00.001-05:002014-06-16T19:44:20.437-05:00Clearing the air.....<div style="text-align: center;">
Ok, normally I post only about Cam and our family but this time I think I may speak for others in the disabled community because I can't imagine we are the only people that experience this. I just have decided after years of questioning, wondering and sitting back waiting and watching that I should clear this up. Whether or not it has any impact, I don't know. I would hope that somewhere it causes someone to pause and think twice before excluding someone based on what they think is better for that person. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
So every year Cam goes to school and talks about how many friends he has, he has great birthday parties with lots of friends, we had an amazing amount of support for the benefit, we've had great turnouts at BBQ's at our house, yet our mailbox and phones seem to only work outbound????? Nothing ever comes in.......no calls for play dates, no mail for birthday invites, no pool party invitations, no summer BBQ's, no beach days with friends, no multi-family weekend trips. It seems as though year after year as Cam gets older and his ability to participate like every other child his age diminishes, the invites get less and less. At first, Kevin and I questioned ourselves. Maybe it was us, maybe the parents didn't like hanging out with us? Maybe we misunderstood the relationship with parents from school? Then we would see everyone again at a function and they would all talk about getting together and how much fun they had, yet nothing? So I started reevaluating the situation and came to this conclusion:</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I think people in general are nervous/afraid to invite someone with a disability to a function for fear they might offend them because it's something they can't do or participate in, or they are worried they won't be able to accommodate them. Well, I'm hear to tell you it is quite the opposite! Trust me when I say that person and/or their family will let you know if they cannot attend because it's just not something they are comfortable with or can do, but would much rather have had the opportunity to decline themselves rather than have someone make that decision for them. When you have a disability so many things are out of your control and so many decisions are made for you everyday, being a friend and participating in activities shouldn't be a decision made by others. I will tell you 9 times out of 10 Cam would rather be invited and go knowing he can only participate somewhat than to never be invited at all. I don't think it used to be so hard to hide it from Cam, but as he gets older and social media becomes more popular it seems to stare him in the face everyday. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
As parents it's always hard to watch your kids grow and friendships form, friendships fade, feelings get hurt, the normal kid stuff. But it's 10 times harder knowing they weren't invited just because someone assumed they couldn't do it or that it would be too hard for them. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Trust when I say this isn't a woe is me, feel sorry for myself moment. This is a statement that I think many of us feel, but don't know how to express for fear of offending someone, or worse yet, worrying that the next invite is out of pity! I don't ever want someone to feel sorry for Cam, or us, or feel obligated to include him. I just don't want him, or any other child with a disability, to be excluded based on thinking that it's just too hard for them or they can't do it. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
All we ever want for our children is to for them to be treated just like everyone else......... And if you don't know, just ask and we will probably tell you more than you want to know :)</div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com4tag:blogger.com,1999:blog-8984823624431420398.post-91205484122288413322014-06-10T23:16:00.001-05:002014-06-10T23:16:21.526-05:00Living the dreamDo you ever have those days where you feel like you're just "living the dream"?<br />
<br />
Really though, what is "living the dream"?????? I think the definition for this is different for everyone, for me it's now. 2014 has started out pretty darn good if you ask me, way better than 2013 that's for sure. Let's see.....<br />
<br />
January just kind of rolled along in anticipation of getting Cam's dog. As well as a group of friends had decided this was the year we could not say NO to a benefit for Cam, so let the planning begin.<br />
<br />
Then came February, off to Ohio to get Cam's service dog. Let's just say we knew she would have an impact on Cam's life, we just had NO idea that the impact would be this great!!!!<br />
<br />
Cameron has always been a happy, optimistic, roll with it kind of kid but now, OH MAN, he is a totally different person. Having Victoria has given Cam confidence like no other. He has signed up for a scuba program through RIC, is going to to RIC summer camp and has shown interest in joining a wheelchair basketball team......WHAT?????? Just last year he wouldn't even go watch a wheelchair basketball game to see what it was like, let alone wanting to join the team!!! His grades in school have been fantastic considering all of his therapies have him out of school over 50% of the time. I think the greatest part for me is that he hasn't used his G-tube since the first night Victoria spent the night with us in the hotel at training.........He has been eating and maintaining weight ever since they met. I can't believe that a year ago our story was so drastically different.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj64vBxQr6QXEUP0NRGCK0VwQvQ6MOuLpwiaAzlczLfMu0IAQK_VzQ6IeknBcm3cpdkmR4JgFUxSFz2xOtHIqQEYRKaLFNEXgfvG2sojVqzTaODR7g6oq_435xuXEueNEzKqmLaMw8Cd1OZ/s1600/IMG_1759.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj64vBxQr6QXEUP0NRGCK0VwQvQ6MOuLpwiaAzlczLfMu0IAQK_VzQ6IeknBcm3cpdkmR4JgFUxSFz2xOtHIqQEYRKaLFNEXgfvG2sojVqzTaODR7g6oq_435xuXEueNEzKqmLaMw8Cd1OZ/s1600/IMG_1759.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of the first nights together at the hotel.</td></tr>
</tbody></table>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkVIWHo0qaf_9fJN3HcnAcfljUsFU_iWh2YPgjy13R2wha9oJ68oXXMHkiav7TQh-CbmgWRsZJ3_il3HbHQfIhYwd0EyDzZhxdwY2voppBUELGlqpjbc63-uM3kp7XdmQgrlhe7Kz8FiWv/s1600/IMG_1760.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkVIWHo0qaf_9fJN3HcnAcfljUsFU_iWh2YPgjy13R2wha9oJ68oXXMHkiav7TQh-CbmgWRsZJ3_il3HbHQfIhYwd0EyDzZhxdwY2voppBUELGlqpjbc63-uM3kp7XdmQgrlhe7Kz8FiWv/s1600/IMG_1760.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Right after the match was made, love at first sight!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHE6CLDghUS7oVFp-VIjlqfxuiVNfuLcv6pIYFfXkUNsE3UTv7WPUSDm9MluQExKluOjJbL_W8uef2vuuQQCTAYutE0yfUvfhbs1156gMqpntRlS__JfUt4UbvE8o2_YU2WiJCIAa4o98d/s1600/IMG_1861.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHE6CLDghUS7oVFp-VIjlqfxuiVNfuLcv6pIYFfXkUNsE3UTv7WPUSDm9MluQExKluOjJbL_W8uef2vuuQQCTAYutE0yfUvfhbs1156gMqpntRlS__JfUt4UbvE8o2_YU2WiJCIAa4o98d/s1600/IMG_1861.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Finally home and inseparable</td></tr>
</tbody></table>
<br />
<br />
March came around, Cam celebrated another birthday, turning 11, with lots of friends and a joint party with his best friend Dec. Kids came from his new school as well as his old and had a great time. It's amazing to me the bond that this particular group of friends have formed at such a young age. There is a group of them that remind me of me and my best friend, they could go months without seeing or talking to each other and catch up where they left off the moment they connect. Relationships like this last a lifetime and are the most important things in the world. I often think people get so caught up in how much "time" they spend and not the quality of it. I think a true friendship can go days, months, even years without connecting and pick up right where it left off.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjNIe-DiVRC_c3xBSvefBKJHiMJZmR-60s7Lpc-sDxVuWddFFq6307v7RBmZHH-V1htZKnocf7eOyHR0AXeQvTgFswbhVpMeJRoXrrUPsgcqrk-ewwhJMK_h_qDYnjmXPhRkaNNVacorlp/s1600/IMG_1857.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjNIe-DiVRC_c3xBSvefBKJHiMJZmR-60s7Lpc-sDxVuWddFFq6307v7RBmZHH-V1htZKnocf7eOyHR0AXeQvTgFswbhVpMeJRoXrrUPsgcqrk-ewwhJMK_h_qDYnjmXPhRkaNNVacorlp/s1600/IMG_1857.JPG" height="240" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgipdlRFWCENLc7mYGfZyT9lRfzgDeI2vvnq9rGW5SXdDjPUniHaVimKYp0fnnjlxrtq_Ca8sCsvlT03ahAMOed3jzlBf190dtn1sCdz3owIqvxFJaZMvnA_V1HDbxsq0XXrtbXXYLufBiD/s1600/IMG_1851.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgipdlRFWCENLc7mYGfZyT9lRfzgDeI2vvnq9rGW5SXdDjPUniHaVimKYp0fnnjlxrtq_Ca8sCsvlT03ahAMOed3jzlBf190dtn1sCdz3owIqvxFJaZMvnA_V1HDbxsq0XXrtbXXYLufBiD/s1600/IMG_1851.JPG" height="240" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<br />
Onto April, benefit plans are well under way and the support is unbelievable. Kevin and I are so humbled by the amount of support being shown by our family, friends and community. The day of the even arrives and WOW, it goes on without a hitch. The committee did an amazing job planning organizing and executing what will go down as one of the highlights of our lives! The venue was incredible, the gift baskets were over the top and the amount of people that showed up was amazing. We loved seeing everyone and so did Cam. A few highlights from the day......<br />
1. The first PT that asked us at 18months if anyone had ever mentioned MD to us was there (let's just say that conversation was very surreal)<br />
2. All of the main PT's and OT's who have had such an impact on Cam over the last 7 months were there!<br />
3. We had family in from out of town showing their support!<br />
4. I was approached by a young boy who handed me a bag of change that said " Mrs. Schwartzberg, I have been making and selling loom bracelets to help Cam, this is for him." He proceeded to hand me a bag of dollars bills and change as I welled up with tears. (for the millionth time that day)<br />
5. Cam was given a stack of cards from his friends at St. Damian because they had made him their VILP (very important Lent person) Let me just say, reading these cards made me have faith that the next generation is AMAZING!<br />
The day was something that will forever remain in our hearts and minds and truly one of the best. Thank you all from the bottom of our hearts.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5k74bMEzlKaIILqV2JTyuMSKRcwUFqNKEANlgKFPQ5wFjMaaB8hDDLr1JZ4apQZTCR6wdbXH2QxurLeskaBf6bo7fARumijjqaYGN_uO6CJaB3KpcFW-cUNLJSZ8DBKnvOnQ8LdbSCRh1/s1600/DSC_0764.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5k74bMEzlKaIILqV2JTyuMSKRcwUFqNKEANlgKFPQ5wFjMaaB8hDDLr1JZ4apQZTCR6wdbXH2QxurLeskaBf6bo7fARumijjqaYGN_uO6CJaB3KpcFW-cUNLJSZ8DBKnvOnQ8LdbSCRh1/s1600/DSC_0764.JPG" height="282" width="400" /></a></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis9ALHXfJD1PWTe2tfKIVcIbgZD2Lvm0DY9yibE1MjX24yc2xj4uxTL264RZVSkTuY0cDzrXl7T-zImOo8zqah_AdKSTsBT4CKkF4epj6lT9FiImGmiRb60PNgsU-0-U9UV5Dgy7gZbOCZ/s1600/CSC_0894.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis9ALHXfJD1PWTe2tfKIVcIbgZD2Lvm0DY9yibE1MjX24yc2xj4uxTL264RZVSkTuY0cDzrXl7T-zImOo8zqah_AdKSTsBT4CKkF4epj6lT9FiImGmiRb60PNgsU-0-U9UV5Dgy7gZbOCZ/s1600/CSC_0894.JPG" height="337" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Crew for Cameron's Crew-sade!</td></tr>
</tbody></table>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
Throughout the benefit process one of the things we really wanted was an accessible vehicle so Cam could drive his chair in and out and we wouldn't have to continue to lift him and his chair everyday. Although Cam still only weighs 43lbs, his chair was up to 75lbs with his emotion wheels and was beginning to take a toll on my body. Out of the blue we get a phone call from someone that says they need to talk to us......so Kevin calls, hears them out and then calls me to call back and make sure he heard them right. It couldn't be.......... we had just decided 3 weeks prior to this phone call that we would get a new van and have a rear lift put in and continue to lift Cam, but his chair could go on the lift. This was a much more affordable option, but this phone call changed everything! This person recently lost someone to ALS, a disease in the same family as Cameron's, and they have a van they no longer need that they wanted Cam to have. Life changing....those are the only words that describe owning this van! The people that made this possible are the kind of people that restore your faith in humanity. They have a beautiful, polite, loving, happy family that genuinely cares for each other and other people. They would do anything for anyone if they thought it would help them. Even through their own struggles they always search for ways to lift someone else up......That my friends is the meaning of "life"<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4fE2Xin8SfPmqU2jN3WGsXt3FBOKODDbkgel-nymKljSLhlIbpHF_ArdAMZRgXWEAXm7nqmcoIABjNy5gOoS8I7hldrWadAWw3w9r77tTRoS2ngYB2mQfopw1W426EZwR2issAzQbNW7w/s1600/IMG_1832.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4fE2Xin8SfPmqU2jN3WGsXt3FBOKODDbkgel-nymKljSLhlIbpHF_ArdAMZRgXWEAXm7nqmcoIABjNy5gOoS8I7hldrWadAWw3w9r77tTRoS2ngYB2mQfopw1W426EZwR2issAzQbNW7w/s1600/IMG_1832.JPG" height="240" width="320" /></a></div>
<br />
<br />
Onto May, school is wrapping up, summer is on the horizon and we cannot wait!! My sister and I took Cam and my niece on vacation to TN and had a blast! I found a place that could accommodate Cameron so he could zip line through the Smoky Mountains, we tubed down a river, rode an alpine coaster, danced at the Wild Horse Saloon and saw the Dixie Stampede......all in 3 days!!!! It was amazing. Now school is out and we are getting our camping trips together, looking for places to kayak and waiting for the days we get to spend on the beach in Michigan.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNOMegTmCRCCdgZmRn05z0qXqbM6kEnev4wrGKtZJa94C5DOlm8yf7ipJuAF94cxov7xCrf-KoCsDdyVjC8EtS9K9l8L7Kgh2PVmSTx3iuO-ZvKTE24fYpffyFbfI2YwL4q8l1g9KxSQH-/s1600/_DSC0011.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNOMegTmCRCCdgZmRn05z0qXqbM6kEnev4wrGKtZJa94C5DOlm8yf7ipJuAF94cxov7xCrf-KoCsDdyVjC8EtS9K9l8L7Kgh2PVmSTx3iuO-ZvKTE24fYpffyFbfI2YwL4q8l1g9KxSQH-/s1600/_DSC0011.JPG" height="640" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My sister, the kids and the guides who made this possible.</td></tr>
</tbody></table>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS-pVJ7za9k-a-MgOcW5fdGrq1Onw5nPt6Nu2UygkytIFSqio4NuPOhl9z9Pcy18Df71X0M7BWzg1xZTv32BDwPVDJ-NDc-0RR8ueeb-r7I3HBflnVOpviMU0_4hIH-GLOuZ8sa0r-KrEG/s1600/_DSC0046.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS-pVJ7za9k-a-MgOcW5fdGrq1Onw5nPt6Nu2UygkytIFSqio4NuPOhl9z9Pcy18Df71X0M7BWzg1xZTv32BDwPVDJ-NDc-0RR8ueeb-r7I3HBflnVOpviMU0_4hIH-GLOuZ8sa0r-KrEG/s1600/_DSC0046.JPG" height="424" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">That smile says it all! (from both of them)</td></tr>
</tbody></table>
<br />
<br />
Sometimes in life you think why me, why was I chosen to take this path. Is there a reason? Is there purpose? Does God really have a divine plan for each of us, and if so, why is this mine? What did I do to deserve this path? Yet you push through so that at times like this you can enjoy every moment to the fullest and smile bigger than you've ever smiled. And enjoy each moment like it's the best you've ever had. And appreciate every person who has touched your life along this crazy journey, even if that the moment you meet you have no idea what their purpose is....one day you will and in that moment you will smile :) Our support system is what makes us keep going and for that we owe all of you a "Thank you" and hope that tomorrow you wake up grateful you were given another day, know that you have changed our lives, (along with many others, I assure you) and SMILE because what do you have to lose!!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5DE14TskDCI2X00nFdyAjeXoCo7nCLQi1lIK3kixVIzNbdLNB9fZldbYdsJ_whcLVotF49tq1NxHKHqjTGAXj6L-CJtp2d4xFGOVcPsfjD_5XEM-z53aFN0eVCT1yXl9sbHAqBqHRWltX/s1600/DSC01879.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5DE14TskDCI2X00nFdyAjeXoCo7nCLQi1lIK3kixVIzNbdLNB9fZldbYdsJ_whcLVotF49tq1NxHKHqjTGAXj6L-CJtp2d4xFGOVcPsfjD_5XEM-z53aFN0eVCT1yXl9sbHAqBqHRWltX/s1600/DSC01879.JPG" height="265" width="400" /></a></div>
<br />
<br />
<br />
<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com1tag:blogger.com,1999:blog-8984823624431420398.post-68894918319105374302014-02-08T19:53:00.000-06:002014-02-08T20:03:31.456-06:00Experience of a lifetime<div><br></div>There are not enough words to describe the emotions racing through my body. They warned us in our binder we were required to read before we arrived that this would be an emotional experience and boy, they weren't joking! On numerous occasions throughout the day I have held back tears of joy, been so proud of Cam, felt so bad for those that were trying so hard to no avail, felt frustration in myself when I wasn't getting a command right (thus confusing the dog), happy to be a part of this experience.......I could go on and on, but I will save you the long, long list of my feelings. Overall as we were driving back after class and our first field trip we all agreed that this is the best experience of our lives to this point. I expected it to be fun and exciting, like getting a new puppy, but in reality it is so much more. I guess I could relate it to the feeling that someone experiences when going to meet a newly adopted child. All of this anticipation of what will it be like, what will the dog be like, will she fit in with us, how will my routine change.......comes to a head when you are paired with this amazing "working" animal that will forever be a part of your life and continue to forever change the life of your child. We have a lot of learning to do and by no stretch of the imagination are we using Victoria to her full potential, but just in learning the basics we have all been tremendously moved by this experience and can see a change in Cameron's behavior, outlook and view on his ability to do things. He remains very focused in class with clear goals in his mind, and anyone that knows Cam like we do, knows that nothing will stop him from getting what he wants out of this incredible opportunity. He has bonded with Victoria in a way that I cannot even put into words, when you see him with her you will understand. His smile is different, he is expressing his feelings differently, he looks to her and her to him like they were meant to be together and know what the other needs in that moment. Last night was the first night I can remember that Cam never once wanted to be on his computer or put his headphones on. He sat with us and joined in the conversation all night long, never more than 6" from Victoria. He even expressed feelings that I'm not sure have ever come out of his mouth before.......As we were watching the Olympics he very openly said "I mean I like watching the Olympics because they're cool, but I don't because it's all stuff that I can never do." Kevin and I sat silently looking at each other, unsure of whether to cry from sadness because it was heartbreaking to hear or cry from joy that he expressed it so bluntly or cry from pride that this experience has made him comfortable enough to just put it out there without a second thought. Even almost 24 hours later I'm still not sure what to do........I guess all of the above seems appropriate.<div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRXJDErfV3a-YhYG4Bvk9Jv7V_VZpkoV_5frahU23DodAog1T93aOab_S_u-UC0HL7bQtH4BowhDac2ZMUGFXJYxdNljYZ3b6MdqUzz5SQVMapOtgiLXvHz23wQLP4tBj9jsrPL1y_ArrY/s640/blogger-image--2036986145.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRXJDErfV3a-YhYG4Bvk9Jv7V_VZpkoV_5frahU23DodAog1T93aOab_S_u-UC0HL7bQtH4BowhDac2ZMUGFXJYxdNljYZ3b6MdqUzz5SQVMapOtgiLXvHz23wQLP4tBj9jsrPL1y_ArrY/s640/blogger-image--2036986145.jpg"></a></div>Day one- all of the dogs waiting to be matched with their kids </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA05BMADhyZm6LBTyHqGfKYEpkFRQUHJI44Nz76KC6cCW3JO0rO8I7_Oh_Ytqw40Mi7fws1t0WM8KPOEqTDTEEStnrJ3gg_KF0cRAdzAtiotSNTbw0tS8RMCUPMOBeFQSzVsPT1dlpjR7o/s640/blogger-image--1991286015.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA05BMADhyZm6LBTyHqGfKYEpkFRQUHJI44Nz76KC6cCW3JO0rO8I7_Oh_Ytqw40Mi7fws1t0WM8KPOEqTDTEEStnrJ3gg_KF0cRAdzAtiotSNTbw0tS8RMCUPMOBeFQSzVsPT1dlpjR7o/s640/blogger-image--1991286015.jpg"></a></div><br><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNcT5ogMoBQ9-aRLBNrekKS9XOey6TDdkvGj-s6YD06DREGRxPFqWwuLPf4zzDrE0E50PoQXHDeoZOGFwdzB7e_MsgU48HLQHYqjWbWxtCx4IEpsjGGIsICQe9AbCgTg4ybDIWyzPDd8vQ/s640/blogger-image--2118647789.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNcT5ogMoBQ9-aRLBNrekKS9XOey6TDdkvGj-s6YD06DREGRxPFqWwuLPf4zzDrE0E50PoQXHDeoZOGFwdzB7e_MsgU48HLQHYqjWbWxtCx4IEpsjGGIsICQe9AbCgTg4ybDIWyzPDd8vQ/s640/blogger-image--2118647789.jpg"></a></div><br> Cam and Victoria right after we found out she was ours. It was love at first sight for them. </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6cWrRYEy5dF1cl7rW8ue0MlQZxsNk1sO9zuODYRytrcP_tOIkS4dXEb53BFMBB3C3yCQfVa0v5Ya8DdrRtrgCecwK7gK7-INqe0OvWhsqmbnIg3Ro0ZWQpCdZuikYjw3hRDfLUjShPB7I/s640/blogger-image--1596929538.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6cWrRYEy5dF1cl7rW8ue0MlQZxsNk1sO9zuODYRytrcP_tOIkS4dXEb53BFMBB3C3yCQfVa0v5Ya8DdrRtrgCecwK7gK7-INqe0OvWhsqmbnIg3Ro0ZWQpCdZuikYjw3hRDfLUjShPB7I/s640/blogger-image--1596929538.jpg"></a></div><br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGoy3fTRTQ7GWzj4GH_M-Ru_L1wC-X455OSBWtEUOnNap8v2adsM6hte4YGOiSymC7wrugBAtDRfQsmhahFuW4wDwGd8qRb157H7sjQP4vy92EUC7KIaHIl0lLvwVtnCuKy5vG3wQMS36X/s640/blogger-image--237884092.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGoy3fTRTQ7GWzj4GH_M-Ru_L1wC-X455OSBWtEUOnNap8v2adsM6hte4YGOiSymC7wrugBAtDRfQsmhahFuW4wDwGd8qRb157H7sjQP4vy92EUC7KIaHIl0lLvwVtnCuKy5vG3wQMS36X/s640/blogger-image--237884092.jpg"></a></div>Our first night at the hotel with Victoria. They were inseparable. </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZHuKQ4MuOOiUeTrq1PKIEKBMT0Ol4XM2p1fyhmPQuQ30U1mhK8qVFHtVmR1ENe-ZHdTRVjQEF216gkEvONx5kiATMHAlqYBTa0P_qQ5ZiInG0Bx_gyE9GjLh9b8xHGjbxyZAd0tiDuTwS/s640/blogger-image-1658731841.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZHuKQ4MuOOiUeTrq1PKIEKBMT0Ol4XM2p1fyhmPQuQ30U1mhK8qVFHtVmR1ENe-ZHdTRVjQEF216gkEvONx5kiATMHAlqYBTa0P_qQ5ZiInG0Bx_gyE9GjLh9b8xHGjbxyZAd0tiDuTwS/s640/blogger-image-1658731841.jpg"></a></div><br>
<br>
During class we sit through lectures and demonstrations on taking care of the dog, what's OK and what's not, new commands, daily routines and a lot of information. Following the lectures we are given time to practice as a group and individually. For the most part Cam and Victoria nail it every time! Today we took our first field trip to Meijer and they did great. We walked through the entire store and she never lost focus on her job and responded instantly to Cam's every command. Next week we move into advanced learning where we take the basic commands and expand on them to work in our world. Today we worked on get and give for retrieving items and next week we will take the basic command and use it for things that Cam will use such as getting his pencil off the floor if he drops it, getting his xbox controller from the couch (the important things) :)<br>
<br>
As much as I'm looking forward to a day off, I am more excited to get back to class Monday morning!! <br>
<br>
Tomorrow we have the day off and will spend the day relaxing with Victoria and maybe venturing out to the mall and dinner. We will keep you all up to date through pictures on facebook and can't wait for everyone to meet her.</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8MXaui60_W6Z5Y-JuXX6nxaytRZdy7Q5C-mt9i7VZeG0ieRY1xGXTmyt0qOJ4oRVtieUZdavYb5Gk4DHkgOpcSc8Z3472W3upnYqhyphenhyphen_xVh5L9j2Fx6Fqsoyohvh0FlmP2wR3D312Jlyhs/s640/blogger-image--1462486418.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8MXaui60_W6Z5Y-JuXX6nxaytRZdy7Q5C-mt9i7VZeG0ieRY1xGXTmyt0qOJ4oRVtieUZdavYb5Gk4DHkgOpcSc8Z3472W3upnYqhyphenhyphen_xVh5L9j2Fx6Fqsoyohvh0FlmP2wR3D312Jlyhs/s640/blogger-image--1462486418.jpg"></a></div><br></div><div>Our new family :) <br>
<br>
<br>
<br>
<br>
<br></div></div>Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-76534235041416318382014-01-29T10:22:00.001-06:002014-01-29T10:22:36.622-06:00Another leg comes to an end<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">As I sit here at the Starbucks enjoying what has become my normal Monday/Wednesday routine, I am filled with mixed emotion. Today will be my final day of this, Cameron will be graduating from day rehabilitation this Friday and moving to an outpatient facility where he will be getting only PT twice a week for an hour. This transition was supposed to happen 2 weeks ago and Cameron asked if he could continue at day rehab for 2 more weeks until he left to get his dog. He truly enjoys his therapy and loves everyone that he works with at the RIC facility. Every Monday/Wednesday/Friday he wakes up ready to go work for 3 hours and loves every minute of it! He works harder than anyone I know and always does it with a smile on his face. While he is sad to see it end and nervous about the transition, I am overwhelmed with emotions..........sad, happy, relieved, excited, nervous, ugh, you name it, I'm feeling it! <br><br>I look back at the last 4 months, and first of all I can't believe we've been doing this for that long, and I think WOW! We made it! Another mountain adventure endeavored, another flag at the peak yet so many more left in my backpack to place. We have made it through one of the toughest years yet and I'm sure it may not be the hardest one we will ever face, but boy it sure gave us a run for our money! Yet through all of this we have experienced so many heart warming moments. It is so easy to look back and reflect on the struggles we had and how hard things were, it seems so hard to find the positives, but they do exist. Through everything we have learned that no matter what the news says about people, there are a lot of amazing people left in this world with huge hearts, people that even if they don't know you they are willing to extend a hand to help, or offer words of encouragement just when you need them. I look back at those moments and they continue to bring tears to my eyes, keep in mind I am sitting at Starbucks right now looking like a fool typing and crying :).<br>We realized that we have an amazing group of people that are supporting us no matter what and are willing to help in any way we need it. I still remember the day we were sitting at the hospital unsure of how to get Cam home because insurance wouldn't pay for transport and the overwhelming response we received from people offering their services and time to help us. Unbelievable! Followed by this gift box we received that was put together by Cameron's best friend and his family. They gathered things from all of these people, most of which we don't know, and that night was one for the history books! Things had been worse than ever before and as we all sat in bed opening gift after gift, card after card filled with words of encouragement, our hearts were warmed and we were once again assured that we would get through this. I remember falling asleep that night next to Cam feeling so at peace, something I hadn't felt in awhile. From there we were inundated with cards, emails, visitors at the house and the hospital and each one of these left a mark on our hearts that we will be forever grateful for. These are the moments that helped us get to where we are today......at the peak ready for the next adventure! <br><br>So onto the next adventure. About a week before Christmas Kevin and I received the best phone call ever, Cam was matched with a service dog and we would be headed to Ohio I February! We have been waiting for this moment for over 3 years. We decided to not tell anyone, including Cam and let him open the announcement letter on Christmas. That moment was unbelievable. In 10 years I have never seen Cam cry from excitement before, and I mean cry, he couldn't even read the first line to let everyone else in the room know what it was. He immediately teared up as soon as he saw the logo on the letterhead! ( once again crying at Starbucks thinking about it). I have video and wish I could have held on to video tape a little longer, but I couldn't keep it together. What a way to start 2014!!!! So as we finish day rehab this week, we head to Ohio next week to begin an adventure that will be a huge part of Cam's life for years to come. We have a lot to learn and from what we understand the training is pretty intense, but we are ready. <br><br>At the same time, we were approached by a group of friends that said they wanted to put on a benefit for Cam and us. Wow, again what a heart warming experience to see a group of people dedicating their time, energy and resources to help us! These people that have chose to be on the committee have jumped in head first and have been truly amazing, and were just getting started. The benefit details are coming together nicely and a date and venue will be confirmed by the end of this week so we will keep you all posted. <br><br>Through all of this I feel like my marriage to Kevin grows stronger. It always amazes me that we can carry each other through each adventure and continue to strengthen our bond. We seem to know exactly when the other person needs strength, compassion, encouragement or just a swift kick in the ass! On a very rare occasion we are both sliding off the cliff and that's when we rely on the people around us. Eventually one of us grabs a hold of the edge and lifts the other back up. It's funny how people always question our marriage when things are bad, I think there is such a stigma about marital struggles when things are tough, but for Kevin and I we have some how managed to make ours work I thins crazy life we lead. <br><br><br><br>Thanks again to all of you for your support, it truly is what keeps us forging ahead. The words of love, support and encouragement are the foundation of our positive attitude and ability to keep going no matter what. <br><br><br></span>Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-83211241433289114882013-12-18T22:06:00.001-06:002013-12-18T22:06:54.607-06:00What is normal?So I know it has been a over a month since I last posted and let me tell you it feels like yesterday! The days seem to fly by like hours and the weeks like days. Our schedule is very hectic between day rehabilitation, hydrotherapy and holiday hours at work. Most days I wouldn't know if I was coming or going if it weren't for the 6 calendars we have synced on our phones. We are very blessed to have so many great people in our lives as well that help us manage the day to day schedule.......neighbors, friends, family and coworkers that have stepped up and offered to help in any way possible. <br />
<br />
On with my title........What is normal???<br />
<br />
So as I was walking upstairs tonight carrying Cam's new bath/shower chair I realized that this is my reality, my normal. My normal has become a gambit of medical equipment that is suppose to make our lives better and easier and for the most part, this is true. Until you take into account that we live in a split level home and don't have a vehicle that is wheelchair accessible, that doesn't bode well for this type of lifestyle but it's our reality, our NORMAL. Today I spent the day with Cam, lifting his now 70lb titanium wheelchair in and out of the back of our van, as we did the last of our Christmas shopping then came home and put him into his stander for an hour and then carried his chair and him into the shower and never did I once think about how much simpler life would be without all of the equipment until Cam told me he was ready to shower and rather than say OK go for it, I had to say "give me 5 minutes to get it ready"............that my friends is the difference between your normal and ours. One is not better or worse, harder or easier than the other, just different. I schlepped his extremely heavy chair in and out of the van without question or hesitation 15 times today, meanwhile watched others frustrated that their child was not getting in the car fast enough or not walking fast enough and could only think to myself be happy that he can get himself in the car and be patient while he figures it out. Be happy that he can walk down the aisle of Target and you don't have to strain your back carrying him or his chair, but I guess you can't expect people to understand that until they've experienced something other than that. Everyone gets comfortable with what they feel is "normal" and that is exactly where I am. I am comfortable with where we are.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVq_Tl_kqBnV4Fcj4Wp7w1YAwTYVU0O1_3RGYYE2UtmIpnoHSx4SjUwKHb2vG30H5aBi8plJdNQbEuiUjjLlSmqPriK1AyFKV3co197fkKrnLbWLDcqspFY5J5G8bk7NosCSWz4IFKvxro/s1600/IMG_1633.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVq_Tl_kqBnV4Fcj4Wp7w1YAwTYVU0O1_3RGYYE2UtmIpnoHSx4SjUwKHb2vG30H5aBi8plJdNQbEuiUjjLlSmqPriK1AyFKV3co197fkKrnLbWLDcqspFY5J5G8bk7NosCSWz4IFKvxro/s320/IMG_1633.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cam in his stander</td></tr>
</tbody></table>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWUGs1vaNymajNt1C-jZjE3u3h4iJ-3zOklREU-MsJGQ6PawZOAlWt0CRFj-GaBgXkB9Fd40PiKzWjVyfctONdiJZFVy8-CCdjJcNZEt-GEyyO3LaMAx_oX4th_nxNzrx_xOjGHDDeIOpm/s1600/IMG_1647.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWUGs1vaNymajNt1C-jZjE3u3h4iJ-3zOklREU-MsJGQ6PawZOAlWt0CRFj-GaBgXkB9Fd40PiKzWjVyfctONdiJZFVy8-CCdjJcNZEt-GEyyO3LaMAx_oX4th_nxNzrx_xOjGHDDeIOpm/s320/IMG_1647.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">His new bath chair</td></tr>
</tbody></table>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
Cam is happy and works so hard every minute of every day trying ot reach his ultimate goal of standing independently and still holds onto the hope that he will take a step, just one is all he wants. He has never once through the entire process siad he can't, he won't or he doesn't want to. I'll be honest, there are days when I lay in bed when the alarm goes off and say I don't want to get up, but that never happens with Cam. He is always ready to go to therapy and works hard during every session. He has made some incredible strides in the right direction. He can now walk for 15 minutes on the treadmill, in the harness, he can complete 2 laps at the rehab facility in the gait trainer and can tolerate his stander for an hour. The tenative discharge date for his day rehab is Jan 17th and from there he will begin an outpatient PT program and continue to work on strengthening and stretching at home. <br />
<br />
I have sat down many times to try and write thank you notes or make cards for those of you who have supported us and Cam through all of this and can never get it done. I have so much to say to all of you, but can never seem to put it into words that fit in a card. In fact, I have so much to say that I draw a blank every time I try and write them out. The emotions of all of your support and generosity are completely overwhelming and I am unsure how to say Thank You in a way that is big enough to represent how we feel. <br />
<br />
This time of year especially makes me appreciate every moment and everyone in our lives. I have a very dear friend who is going through the holidays for the first time after losing her daughter, another friend whose mother only has a short amount of time with us, the anniversary of my grandmother's passing and numerous people who are overcoming their own struggles everyday, it's pretty hard to not appreciate everything we have and are blessed with each and every day when you put it into perspective. <br />
<br />
I often have people ask me "how do you do it?" Well, let me put it this way.........what choice do I have? This is the hand I have been dealt and I wake up everyday just like you and face the days challenges head on........I just choose to do it with a smile on my face and a great sense of humor :)<br />
<br />
Happy Holidays and hug the ones close to tight and love them with every bit of your heart every minute of every day.....no one is promised tomorrow so enjoy today! <br />
<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-49809984910219920562013-11-16T22:52:00.000-06:002013-11-16T22:52:57.151-06:00Discharging tomorrow!!!! <div style="text-align: center;">
<span style="color: #990000;">Well another leg of our journey is coming to an end tomorrow. Exactly 12 hours from now we will pack our bags and head home to begin the next leg of Cameron's rehabilitation and new lease on life. Throughout our stay here we have taken some amazing strides in the right direction, met some amazing people and learned so much about Cam's true strength and determination. We cannot thank the therapists enough for what they have given Cam and us over the last 19 days! They truly are an amazing and very talented group of individuals that come to work everyday in hopes to make someones life just a little better, and let me tell you they did just that. Cameron gave them all he had each and every session. He never told them he couldn't do something or wasn't willing to try, he never questioned an idea or concept they had before testing it out and he did everything they asked with 110% and usually ended with a smile on his face. Each therapist had a little something different to offer and appealed to Cameron in a unique way. We are leaving here with a new found sense of Cam's independence and not only are we excited about this, Cameron is confident in what he can do, he has never been so open and willing to participate in daily routines such as getting dressed. Now he has discovered that if his clothes are in reach he can get himself dressed head to toe before getting out of bed!!!! It's things like that that really enrich the lives of someone with a disability. Think about this for a moment.......</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">What if you had to ask someone for help for everything everyday? What if you had to wait for someone to come help you when you wanted to get dressed? What if every time you had to use the washroom you had to ask for help and then have someone stand there and watch?</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">This is what a normal day for someone with a disability is like if no one gives them the confidence or tools to do it themselves. I can only hope that Cam never feels like a burden because I know that if I was in his shoes I certainly would! I hate even asking for help when I really, really need it ( I know that is so hard for some of you to believe) let alone asking 5, 10, or sometimes 20 or 30 times a day for help. What they have given him is the ability to do things on his own so that he doesn't have to ask for help for a lot of things that he did a month ago. It's an amazing feeling for me and I can only imagine how great it must feel for him!</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">From here we are heading home to try to get some, and I use that work cautiously, normalcy back to our lives. Cam will be going to the RIC day rehabilitation program 3 days a week as well as coming back here on Tuesdays for hydrotherapy. On the days he has therapy he is going to try and go to school in the afternoon if he is not too tired and then he will also be going full days on some Tuesdays and every Thursday. Things for Kevin and I are about to become very hectic. As most of you know my work schedule this time of year is less than desirable, but hey it's my favorite time of year at work so I'll take it, and then trying to squeeze in all of the therapies, homework and daily exercise routines it will be insane! I am so glad that he is transferring to the day rehab program though instead of straight to outpatient therapy. I think he needs the intensity for his body to keep moving in the right direction and I think it motivates him to keep working hard and pushing, rather than doing things an hour here, an hour there and driving him all over the world everyday. This way I only have to drive him to half of the world almost everyday :) </span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">The other part of the story after being here is the kids that we have met......WOW! I've seen and met some amazingly courageous kids, some lazy and ungrateful kids who don't see how lucky they are to be here. Some of the kids here have the same zest for life that Cam does and don't let anything get in there way. Everyday you pass by them in the hallway and they smile from ear to ear as you pass and it's the best medicine! Cam has staked his claim on a few of them along the way with his warm heart and endearing smile. He has gone out of his way numerous times to make sure that the shy kid down the hall knows he cares, given a "lift up" to our roommate who is often lonely and in desperate need of attention to always giving the girl on the floor that happens to have a thing for him a hug whenever she wants (she's quite the little hugger). We have watched other kids progress in their therapies, but everyone seems awe struck at the amount of progress Cam has made in 19 days. Even as we were finishing our last session today the OT said "I remember the first day I met you and you were in so much pain Mom was the only one who could move you to today you don't need any help to do anything!" He went from not being able to tolerate any weight or movement on his legs and ankles to riding 2 laps unassisted on the bike, standing in the stander for 50 minutes, getting dresssed head to toe, walking 2 laps in the gait trainer, transferring from chair to table/bed/toilet using his new slide board, moving from laying to sitting quickly and efficiently and even standing with minimal assistance using the parallel bars. Wow, I got goose bumps all over again just writing all of that out, and I'm sure I'm forgetting things! </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">I can't say that I expected this experience to be so moving. I am happy for everything he accomplished, ecstatic to be going home to my own bed, sad to be leaving a great group of people and therapists, excited and sad to be going back to work ( I love what I do, but I have really enjoyed my time with Cam) and nervous for what the next leg of the journey will bring. I can only hope that we find another set of amazing therapists at the satellite location, which I'm sure we will, and that Cam continues to find joy in learning new ways of doing things for himself and that his confidence grows more and more each day. I am still holding on to the hope that he can reach his ultimate goal of taking a step on his own, I feel like we are leaving here set up for success and that's an amazing feeling.</span></div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzX0ccJAbdelWbN0NT3tFdBufrgVufxQxD2mvACWN8PjGGzznRJcYEcSPSU8RTiEmy__49u0WRVaP54GeTYlg' class='b-hbp-video b-uploaded' frameborder='0'></iframe></span></div>
<div style="text-align: center;">
<span style="color: #990000;">This is Cam riding the bike completely unassisted this morning for 2 laps! </span></div>
<div style="text-align: center;">
<br /></div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-35198320131120943652013-11-08T00:15:00.002-06:002013-11-08T00:15:54.930-06:00Emotional to say the least<div style="text-align: center;">
<span style="color: #990000;">If anyone ever told me how emotional and hard going through the rehabilitation process was going to be and I laughed and said it will be no big deal, I'm sorry...........I should've listened!</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">Don't get me wrong, Cam is making great progress and this place is amazing. Cam is regaining his strength that he had lost since the surgery very quickly and is able to do some things on his own again like go to a sitting position from laying down and rolling over. He is not as quick and swift at these as he used to be, but we are happy to see him doing them again. He is also learning new techniques and "tricks of the trade" to help with daily living things like putting on his own shoes. Although the independence is great for Cam and I know these things will make his life so much better in the long run, it's very hard for mom and dad to sit back and watch him struggle, it would be so much easier to just do it for him. That my friends is where the emotional part comes in, well amongst other things but we will start there.............</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">As you watch Cam in therapy you go through a crazy range of emotions over a short period of time, his sessions are usually 30-60 minutes at a time. In the beginning you are totally excited to find out what he will be doing to overwhelmed by what he can do, most of the time to tears, to heart broken watching him work so hard to do what we consider the simplest of tasks to finally trying to cover them all up and focus on what's important.....celebrating the wins with Cam. Wow, I know right! And we do this 3-6 times a day everyday, no wonder I'm exhausted by the time we lay down at night. Some of the hardest things seem like they would be the easiest, like for example, Cam is realizing that he can do things for himself like cut up his own food. So there him and I sat eating breakfast as usual and I reach for Cam's plate to spread the butter and cut up his pancake and he says "no mom, I got this" At first I was like awesome, good for you! Then he worked and worked and worked to get two bite size pieces cut up and with every stroke of the knife the knot in my stomach grew larger and larger. I basically had to sit on my hands to stop myself from reaching over and saying "let me help you" I knew in that moment that I couldn't do that, nor would I do that! Cam was expressing a need to be independent, the therapists have given him so much confidence that he wants to do things for him self. He looks up at me, after getting those two bites cut with a light in his eye and smiles, AMAZING! He continued cutting and eating, cutting and eating all through breakfast and as we were walking back to the elevator he says, "wasn't that cool mom, I did it myself!" All I could do in that moment was to hold back the tears that were brewing over 1,000 emotions and celebrate with him. People getting on the elevator probably thought we were a little nuts because we were excited, high five-ing, you name it we did it! It was in this moment that I realized it did not matter how small his accomplishments were, it was my job to be excited about it. We lay in bed at night and he says "mom" about 200 times between the hours of 8am and 8pm and most of the time he needs a position adjustment in the middle of the night, but other times it's to show me what he can do. I can't begin to tell the the number of times he says "mom, look I can move my toe" "mom, look I can bend my knee" and each and every time I take a deep breath and celebrate with him! It is hard, sometimes I'm exhausted and will have just sat down and the thought of getting up to watch him wiggle his toe is down right miserable, but I keep telling myself it's not about me, do it for him. Then there are the times when the things he does are down right incredible, like using the gait trainer and walking. Holy Crap! Let me tell you that was so emotional I was nauseous and I would get up out of my seat any day anytime to watch him experience that feeling again and again.</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1mf1H5jzcf1E27-RiaWwKBW_1AXvSjXHSSmyN3tMFC4KHl9Xn3PSIMcyoEMZpRQrtXTFii8CrGqwLeGAT-1GDmEQqWW8cP6Z0CHGYmBRUsgCZ9F8GszyS1d6MIfe0zRc_5uWH9_F54jKm/s1600/IMG_1563.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1mf1H5jzcf1E27-RiaWwKBW_1AXvSjXHSSmyN3tMFC4KHl9Xn3PSIMcyoEMZpRQrtXTFii8CrGqwLeGAT-1GDmEQqWW8cP6Z0CHGYmBRUsgCZ9F8GszyS1d6MIfe0zRc_5uWH9_F54jKm/s320/IMG_1563.jpg" width="240" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #990000;">Cam at his first hydrotherapy</span></td></tr>
</tbody></table>
<div style="text-align: center;">
<span style="color: #990000;">Today really made me aware of exactly what it was that I was feeling as I sat opposite of Kevin while Cam did his afternoon PT session. I watched as his facial expressions showed every emotion I was feeling. I even watched as the therapist, who Cam has only worked with in the pool so far, got a little emotional as well. He had Cam do a few things and then offered up a couple suggestions for Cam to try, of which he did and very successfully. Then at the end he asked Cam to show him how he could go from laying to standing and asked him if it was going to amaze him. Cam responded with "yeah, check this out, I'll show you what I can do!" So we have excitement right, then Cam works and works and works to get to sitting, using a technique that he came up with on his own, and BAM he was sitting. I looked up and saw the therapists face turn red and I'm pretty sure he may have swallowed down a few tears. He looked at Cam and said "now that's why I love what I do, that was amazing" </span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3ltoJB-V6O9BsJd1q1YfxiL0BuKMWPOtk4e2Malmxyq4gQPRiW_6YCo3LbbJIp1-ayQO1T7pJvqYznrdilJtKQLIbwHd1unTasJ-hlmHpmI90rQbaUss_wYTmPrtXn2Lt4Ii07tpnJ8_V/s1600/IMG_1557.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3ltoJB-V6O9BsJd1q1YfxiL0BuKMWPOtk4e2Malmxyq4gQPRiW_6YCo3LbbJIp1-ayQO1T7pJvqYznrdilJtKQLIbwHd1unTasJ-hlmHpmI90rQbaUss_wYTmPrtXn2Lt4Ii07tpnJ8_V/s320/IMG_1557.jpg" width="240" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #990000;">Cam using the gait trainer for the first time!</span></td></tr>
</tbody></table>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicy6nm6SwbK8L2rIipNwj0kyHGaXitmC9jAamsEcM41ohRe3eunq0l2aHWzTS4rzX31dRsOsRIkh1sG7MAURDV44I9EhsDmJ_MvOnJU07N2ZEW-2RmJzEff2BGuk7NqK-pAYYtOr_V-5bk/s1600/IMG_1565.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicy6nm6SwbK8L2rIipNwj0kyHGaXitmC9jAamsEcM41ohRe3eunq0l2aHWzTS4rzX31dRsOsRIkh1sG7MAURDV44I9EhsDmJ_MvOnJU07N2ZEW-2RmJzEff2BGuk7NqK-pAYYtOr_V-5bk/s320/IMG_1565.jpg" width="240" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #990000;">Very happy after his first hydrotherapy session</span></td></tr>
</tbody></table>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">When Kev left tonight he apologized for getting emotional, to which I replied, don't be sorry for being emotional it's a very emotional process. Just be sure that Cam doesn't see the look of wanting to help so badly that you look sad or disappointed that he is working so hard when it used to be easy. Ugh, when I read his message I wished I had a closet to go to and have a good cry, and maybe a little scream because I too had realized today how emotional this was and, sometimes reality sucks. But instead I lay here in the dark in my not so comfy chair/bed and write. (probably the healthier of the two options) </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> It's a rough rocky road right now and we need monster suspension when we are with Cam to be sure that we are continuously supporting his wants and needs to be independent as hard as that may be. I only hope that Cam can fulfill whatever wants and needs he has and be happy being him. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">So I will leave you with this..............</span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">Never, ever take for granted what you consider the simple things in life. The small simple things are the ones we should hold near and dear to our heart and feel blessed each and every day that we can do them. What you may think is easy, may be near impossible for someone else and you never know who that someone else might be so you should always be prepared to celebrate. The only thing I can be sure of, for that person who sees it as impossible, it feels like a million bucks to have someone show you a way and to do it just once!</span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglITCBNG0X4chrKIslnZAj51ZG0_Oi_xBXnecb4kyb0RuOtHahLErJdbaqKkAQZR5OPn9AoJ1awGxF4IPMw6XbeEIy_5nagHhmwBn5gdegqnJNCNC5PBXZfljoPHHyX_4TOKL8HfndFS5f/s1600/IMG_1038.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglITCBNG0X4chrKIslnZAj51ZG0_Oi_xBXnecb4kyb0RuOtHahLErJdbaqKkAQZR5OPn9AoJ1awGxF4IPMw6XbeEIy_5nagHhmwBn5gdegqnJNCNC5PBXZfljoPHHyX_4TOKL8HfndFS5f/s320/IMG_1038.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #990000;">Cam laying flat on a table before surgery</span></td></tr>
</tbody></table>
<div style="text-align: center;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMo6HeiQgJvtxO7qp8zXMO_bg4CZTv-GY9QG09-2Si2TeNJr6LMa139dnLQHjeNxTZRueAWqkWKhDjSSFMcqVh6D6IOpGwrVI6p-CCD1XjEhQRBBpNYn96vuXVGPIiEmg7-piKvCwnWlsC/s1600/IMG_1568.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMo6HeiQgJvtxO7qp8zXMO_bg4CZTv-GY9QG09-2Si2TeNJr6LMa139dnLQHjeNxTZRueAWqkWKhDjSSFMcqVh6D6IOpGwrVI6p-CCD1XjEhQRBBpNYn96vuXVGPIiEmg7-piKvCwnWlsC/s320/IMG_1568.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #990000;">Cam laying flat after surgery, his knees are almost completely straight!</span></td></tr>
</tbody></table>
<div style="text-align: center;">
<br /></div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-2948628414012237802013-11-01T20:42:00.000-05:002013-11-01T20:42:11.182-05:00Turning point<div style="text-align: center;">
<span style="color: #990000;">And the trek through the mountains continues..........</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">Let's see, since last I wrote we have experienced the full gamut of emotions. We went from completely ecstatic getting the casts off to extreme disappointment at the amount of pain he had afterwards then we went onto anger/sadness about checking into rehab. From there we continued with the sadness after we checked in and were less than overwhelmed with our temporary "home" and I think in that was a bit of nerves about the days to come, then onto the evaluations we go. Thursday morning rolls around rather quickly after a short night on sleep and he is already worked up about PT coming in first thing in the morning. He had a lot of pain in his ankles but that didn't stop PT from doing their thing. Within a matter of 20 minutes she had him sitting up on his own and then onto his feet (with her help of course). It was at that moment that I knew it didn't matter what the room looked like or how comfortable (or not) my bed was but that we were in the best place possible for Cam to have a shot at a successful rehabilitation! Cam was still a bit unsure at this point if he was "all in" on this place and the plan for rehab. They convinced him to participate in Trick-or-Treating, which he was not at all excited about, but he faked it good :) He saw lots of therapists and kids in a variety of different places in the rehab process and I think it helped to open his eyes, and mine, a bit to what we had going for us. Cam has done this before and has a good shot at walking again, some kids are not so fortunate but they were all so happy and it warmed my heart to see how caring and dedicated all of the therapists were. No matter how much "work" it was they ensured that every single kid got to experience the same thing and hit every floor with bags and buckets in hand. Simply amazing!</span></div>
<div style="text-align: center;">
<span style="color: #990000;"> <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4BNNaBf12SNIL3cEDDCz9XP5HtRLaesw-FKOEGXOW29jUEgN1u9VToErhXXooshWLOd6-zMnH-PTJmSf6eow5xqWfy7GsYeIpwzTDZZFIRMA6JN7nTxl-f7yrQ-_xvlbapHWyijOp_U0d/s1600/IMG_1536.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4BNNaBf12SNIL3cEDDCz9XP5HtRLaesw-FKOEGXOW29jUEgN1u9VToErhXXooshWLOd6-zMnH-PTJmSf6eow5xqWfy7GsYeIpwzTDZZFIRMA6JN7nTxl-f7yrQ-_xvlbapHWyijOp_U0d/s320/IMG_1536.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><span style="color: #990000;"><b>On our way to RIC, not so happy. </b></span></span></td></tr>
</tbody></table>
</span></div>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO218IbU9i3U9VXx5zRZhh0D4pDzWjxxkyvRHFe9Rmgy4yURfLe-vW6S76bnwDIPQdMe9H74EelJVvhU05joYG_JHfs7-Dz5MfMJ_oKTTwwJSf6TcM00gplceAmm0VOEi8NgtxPQRXzt3j/s1600/IMG_1540.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO218IbU9i3U9VXx5zRZhh0D4pDzWjxxkyvRHFe9Rmgy4yURfLe-vW6S76bnwDIPQdMe9H74EelJVvhU05joYG_JHfs7-Dz5MfMJ_oKTTwwJSf6TcM00gplceAmm0VOEi8NgtxPQRXzt3j/s320/IMG_1540.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><b><span style="color: #990000;">Sitting up for the first time since surgery</span></b></span></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT5zp-au7shSzU87L86ECj1yjoDihBWq0O4i-a7OqNVWRuN4qjC0ztmskqqV18h2SIvtxm2PsDHutqJNgTn0lE9stdMosSQDIjWoCiuPbkianSGA2ggq85-DPBh0p_Op1iZzrgAHV3yhyF/s1600/IMG_1542.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT5zp-au7shSzU87L86ECj1yjoDihBWq0O4i-a7OqNVWRuN4qjC0ztmskqqV18h2SIvtxm2PsDHutqJNgTn0lE9stdMosSQDIjWoCiuPbkianSGA2ggq85-DPBh0p_Op1iZzrgAHV3yhyF/s400/IMG_1542.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><b><span style="color: #990000;">Cam feeling his weight on his feet for the first time in a long time!</span></b></span></td><td class="tr-caption" style="text-align: center;"> </td><td class="tr-caption" style="text-align: center;"> </td><td class="tr-caption" style="text-align: center;"> </td><td class="tr-caption" style="text-align: center;"> </td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxufZJhH5p6N0k7oFZt4ezfWLQA1zdBi0Q0r1niOZg2XQENU7nJWrxudJFxzEPOlvfhC3GM4NvdjuJ0d7yPwBlgIDlywFb5VCPMBxEVhfIHOBkqzM0aU7h8XVUqRMG2ERuxYgDIk-VmLP1/s1600/IMG_1545.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxufZJhH5p6N0k7oFZt4ezfWLQA1zdBi0Q0r1niOZg2XQENU7nJWrxudJFxzEPOlvfhC3GM4NvdjuJ0d7yPwBlgIDlywFb5VCPMBxEVhfIHOBkqzM0aU7h8XVUqRMG2ERuxYgDIk-VmLP1/s320/IMG_1545.jpg" width="240" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><b><span style="color: #990000;">His amazing Halloween costume</span></b></span></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTIv2_L4QoAIPkQBCNlDRIF7z-hkxZFPzzyFbDhJzijQQcoxxYGAcFggFEc1-bODHQOMiCVBmvZxyPrnO-N7gl9FQsE3c3yassF8AnY-clhUSQhyydGSYtjMVqOa2Cw4_nvMHw-Okbjkzh/s1600/IMG_1548.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTIv2_L4QoAIPkQBCNlDRIF7z-hkxZFPzzyFbDhJzijQQcoxxYGAcFggFEc1-bODHQOMiCVBmvZxyPrnO-N7gl9FQsE3c3yassF8AnY-clhUSQhyydGSYtjMVqOa2Cw4_nvMHw-Okbjkzh/s400/IMG_1548.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><b><span style="color: #990000;">Cam raising himself up on the tilting table</span></b></span></td></tr>
</tbody></table>
<br />
<div style="text-align: center;">
<span style="color: #990000;">We had yet another rough night on sleep, they have been giving him some melatonin which seems to help him fall asleep but the knee immobilizers are still pretty cumbersome and uncomfortable so he is awake a lot. This morning we woke up and got the day started bright and early with PT at 8:30am. It was off to the tilting table to get some weight on those legs, ankles and feet. The therapist was quick to tell me to go get my coffee and relax so she could see how much she could get out of him without mom around :( Much to my surprise when I got off the elevator he was almost all the way up and chatting away with her so I stood back and watch the rest of the session from a distance. Cam had no idea I was behind him and on more than one occasion I could feel my eyes welling up with tears and had to pull myself together. You have no idea what it feels like to see your child go from so much pain and struggle to finally be in a standing position carrying on a conversation with a smile on his face. I didn't care if he was strapped to a table that was helping him or not. All I saw was my baby boy on his own two feet standing tall. He worked hard all hour long and then came back to the room to relax before another session. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">We had new inpatient orientation followed by what was to be the most amazing moment of rehab we've ever experienced. This is where the light bulb turned on for Cam and his whole attitude and outlook was forever changed. His goals are set high and determined to leave here doing WAY more without assistance than ever before! So here's how it went........</span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">He had a new therapist named V(going to only go by letters for privacy) who was a guy, brownie points with Cam right off the bat. Then he started asking Cam about comic books and super heroes, now he is in! I sent them on their way so I could get cleaned up for the day as the morning was quite busy. Shortly after I get out of the shower there is a knock and the door and I opened it only to find Cam standing up in a wheeled stander, and not just any wheeled stander. This was the same exact stander we tried to fit him for before we decided on surgery and Cam could not even get close to being able to stand up in it..........and now he is in it comfortably, standing tall, legs straight AND wheeling himself down the hallway!!!!!!!! Now the tears are welling up for sure, but I 'm trying not to embarrass him totally so I suck it up and just smile on through. I quickly sent them on their way so I could gather myself, inside I was jumping up and down like a little kid on Christmas. I was so excited I forgot to get a picture or video until he was almost around the corner, but I got a little video that I will attach so everyone can enjoy the moment with me. When they returned from their session I had my Cam back, he was happy, excited, positive, determined and sitting up in his chair with the legs down and a big ol' smile on his face!!!!! I haven't felt this good in a very long time. </span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxi9cj2EC33qJi_QiJvJstvDm97bWmEkFwkUqK8olUEsv5pO9AkQnxrrpWb2YyjYakYOPP-trpT4pAUadutaw' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">Later on in the day the Psychologist came in to do her thing and he talked openly and was very positive about everything she asked. He was very chatty and answered all of her questions thoroughly, he even volunteered information and stories (now that's Cam!) He then had OT which at first he wasn't looking forward to because he was a bit sore from all the PT work that he did, but once he got going it was great. He sat up in a chair, crossed his feet, raised his legs and even took off and put on his own shoes. I know these things may seem small to some of you that read this, but in our world that we have lived for the last year these things are huge! Cam had really taken a nosedive in being able to do things for himself and to watch him push his way through some of the pain to reach the end result all on his own was incredible. They then took off in his chair and went off to work out his arms and he once again returned smiling from ear to ear. He now says that he really really likes PT and OT and that this place is pretty awesome. Tonight we had dinner together in the dining room, took a nice long hot shower and now he is relaxing and getting ready for bed. He is very tired tonight but says he feels good about what he accomplished today, as do I. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">Cam has set his goals high and I have no doubts that he will do everything in his power to achieve them. His determination and spirit are back and I LOVE IT!!!!! This weekend we will get to go out on pass a little bit and get him some fresh air and good food. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">I stuck my flag in the ground at the top of Mt. Everest today, I intend to stay there with him as long as I possibly can and watch it wave in the wind. We are so blessed to have an amazing support system of family, friends and even friends of friends and I hope that you too will continue to stand with us because this is one heck of a journey!</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><b>SMILE :)</b></span></div>
<div style="text-align: center;">
<br /></div>
<div style="display: inline; text-align: center;">
<h1 class="topictitle">
<span style="color: #990000;">Your hardest times often lead to the greatest moments of your life. Keep the faith. It will all be worth it in the end.</span></h1>
</div>
<div style="text-align: center;">
<span style="color: #990000;"> </span></div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com1tag:blogger.com,1999:blog-8984823624431420398.post-45108761965618867732013-10-29T21:52:00.005-05:002013-10-29T21:52:58.158-05:00Casts are off!!! <div style="text-align: center;">
<span style="color: #990000;">Well, the day that Cam has been waiting for has finally arrived. THE CASTS WERE COMING OFF!!!! 3 weeks have passed and we headed downtown for what Cam thought was going to be the best day ever. Kevin and I had tried to prepare him that he would be sore and that things were not going to feel outstanding just because he wasn't wearing casts, but regardless, he was excited. 10:15am the guy from the cast room calls us back and immediately begins cutting. Cam is laughing, especially when he gets to his feet because it tickles so much. It is so nice to see him laugh and smile while we are at the doctors office, normally he is mad and afraid. He cuts and cuts and cuts then pulls them apart and rips them off!! Cam is smiling from ear to ear until he realizes how much it hurts to move any part of his leg, ankle or foot. Now the disappointment starts to set in, it's written all over his face. Then the cotton comes off and we discover big, and I mean big, bruises and blisters on his knee caps from where the casts were pressing :( No wonder he kept complaining that his knees had been "shot off and were in lava". Now they fit him for knee immobilizers, which I was dreading, and it turns out that he likes them because they support his legs so they don't move. Finally the surgeon comes in to see the results and remove the stitches. She was very happy with how straight his legs were and how well the incisions had healed. Now the nurse starts taking out his stitches and I start going down, and by down I mean lightheaded, nauseous, sweating, on the verge of passing out! LOL Not sure why, but she made me feel better telling me that most parents experience the same thing. So while Cam laid there all brave and relaxed while they removed all the stitches I sat in the chair white as a ghost drinking my grape juice :) </span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhowBu42FYyC3nBGQ7EJaCP4O_WK14PVKDUPGU6SQ6FE1QJI5nGBf3EIpvrGSD7PZcYqcCU466FTMKrbgr1OZs-TfbS9cLCn8iOAqZo5Ev-e7l9kB5m9mFmVGPaxLnNYLiHD9R3lrw8fJhJ/s1600/IMG_1527.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhowBu42FYyC3nBGQ7EJaCP4O_WK14PVKDUPGU6SQ6FE1QJI5nGBf3EIpvrGSD7PZcYqcCU466FTMKrbgr1OZs-TfbS9cLCn8iOAqZo5Ev-e7l9kB5m9mFmVGPaxLnNYLiHD9R3lrw8fJhJ/s400/IMG_1527.jpg" width="300" /></a></span></div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM_2ju5fvxkYBASR34Vj_jiSdn4SK9PmbKWNcFhWvFgjNnhmEM0pK4enp_Ih_Ckg4sQVGMCdslLiPsQ5YNbHVh5t7weDvG83-Knw2qGBq3l8m39c8ncC5zhkW51PlIUtrjrRTkp5oOJlaR/s1600/IMG_1533.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM_2ju5fvxkYBASR34Vj_jiSdn4SK9PmbKWNcFhWvFgjNnhmEM0pK4enp_Ih_Ckg4sQVGMCdslLiPsQ5YNbHVh5t7weDvG83-Knw2qGBq3l8m39c8ncC5zhkW51PlIUtrjrRTkp5oOJlaR/s400/IMG_1533.jpg" width="300" /></a></span></div>
<div style="text-align: center;">
<span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlc5hvDhn8QGAUWX7iBOCLfRyfhaqqO6LmVzvG0KsZ4n19AljIz_EQE24Wl-mbJryR2-sESywb74GSmH-iKdcEBEVZXHUvMhRYq_N1PkeTqxKQEyG-wrdYExD8ctv9C_L7hzm5CBhFowPF/s1600/IMG_1534.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlc5hvDhn8QGAUWX7iBOCLfRyfhaqqO6LmVzvG0KsZ4n19AljIz_EQE24Wl-mbJryR2-sESywb74GSmH-iKdcEBEVZXHUvMhRYq_N1PkeTqxKQEyG-wrdYExD8ctv9C_L7hzm5CBhFowPF/s400/IMG_1534.jpg" width="300" /></a> </span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNhusTDasYr1TLV7FocRLpGIvxwM207brgc_yWWEwuhtZFyArdfB7H-osqf7FShD8bpw-9Sb8cDUg8QNR_2AQYSmvQJCUvPCqwT_7Rn_2ELHw4XI4k4CEeLKEI2moBiiEvO3W8bVfgzb9_/s1600/IMG_1535.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNhusTDasYr1TLV7FocRLpGIvxwM207brgc_yWWEwuhtZFyArdfB7H-osqf7FShD8bpw-9Sb8cDUg8QNR_2AQYSmvQJCUvPCqwT_7Rn_2ELHw4XI4k4CEeLKEI2moBiiEvO3W8bVfgzb9_/s320/IMG_1535.jpg" width="240" /></a></span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">Once we finished we headed for home and Cam couldn't wait to take a nice hot shower. Him and I fumbled our way in and out of the shower/bath with only a few minor pains and mishaps. Let's just say that was not meant to be a one man job, an extra set of arms would've gone a long ways. He was ready to relax in bed and watch videos on his computer for a bit and settle in. Meanwhile I found myself sitting in the kitchen wishing he had his casts back on. Over the last 3 weeks we had a pretty good system in place, the pain was nearly gone and we were moving in the right direction, now I feel like we've gone backwards. In my rational mind I know that the step we took today was in the right direction, but come on now, who is rational at this point.......certainly not me! We worked our way through the day, had a couple very special visitors and Cam even got a bag of Halloween cards from the kids at St. Damian! </span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">Tomorrow begins a whole new adventure.....we check into rehab! Tomorrow we will check in around lunchtime and spend the afternoon getting settled into our new temporary home. Thursday morning will be the "real deal", we meet with the therapist for his evaluation. I have been trying to prepare Cam for this by moving and stretching him as much as he will tolerate letting him know that the therapist will be moving him every which way come Thursday. I hope that things go better than my gut is predicting, but if I was being honest, I am scared to death of what's to come in the next week. I am so afraid of seeing Cam in pain that I already have a knot in my stomach and we haven't even started :/ I am trying to keep that under wraps and stay positive for Cam so he can go in with an open mind, but inside I am screaming obscenities! </span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">We will keep you posted as rehab progresses and hopefully be able to post some pics of his progress. For now I want to thank all of you again for your kindness, generosity and all of your thoughts and prayers. I know in my heart of hearts we are making strides in the right direction and we will see great success. Cam is one determined little boy that I know will put everything he has into making this worthwhile. When I think of it that way it makes me smile from the inside out! :)</span></div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-67043919728381519862013-10-13T21:25:00.000-05:002013-10-13T21:25:01.844-05:00A large dose of reality<div style="text-align: center;">
<span style="color: #990000;">Saying that the last five days have been hard would be an understatement, a huge understatement! We were all prepared for surgery, like the ones in the past, but we weren't prepared for what followed. </span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;"> I will admit, the anxiety preceding this surgery was greater than any other because we knew the recovery period was going to be longer and harder than any of the others. Leading up to the surgery there were a lot of sleepless nights, knots in the stomach, cries in the car and a whole range of other things. But what followed the surgery has been far and away the tallest mountain peak we have attempted to climb. I feel like we are climbing Mt Everest and just when we think we are reaching the peak, flag in hand, the clouds move in and we are forced to descend and start over. </span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLMkbQAIlSuqUSUmAoOaYjyi1ShLtbsLIqS-zxEmtEjv9SBSdPPnIzntWHRyF7zh6QcOsmYSCWNHN8nLnaTWvvzsRYdCFUwOk7AuKS8mmB9eVlQE8XxBRvVY5f3QDIu7LJupEhjuDUnnl1/s1600/IMG_1457.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLMkbQAIlSuqUSUmAoOaYjyi1ShLtbsLIqS-zxEmtEjv9SBSdPPnIzntWHRyF7zh6QcOsmYSCWNHN8nLnaTWvvzsRYdCFUwOk7AuKS8mmB9eVlQE8XxBRvVY5f3QDIu7LJupEhjuDUnnl1/s320/IMG_1457.jpg" width="240" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #990000;">Cam finally resting peacefully after getting the pain under control.</span></td></tr>
</tbody></table>
<div style="text-align: center;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR-re8efYxs-r7zm-C-a-oZYvo69R50TgrWGpz8wTwVU9OQ0DTVwYGVl75B9YHgiwhPQG1bXm2Dr2xI-a-5IqqMTRhNLpQQ0VKeTgDdVjXZ7HU-TtHOOYrybYTh4Su1wsqHoiK5zlSrHzQ/s1600/IMG_1459.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR-re8efYxs-r7zm-C-a-oZYvo69R50TgrWGpz8wTwVU9OQ0DTVwYGVl75B9YHgiwhPQG1bXm2Dr2xI-a-5IqqMTRhNLpQQ0VKeTgDdVjXZ7HU-TtHOOYrybYTh4Su1wsqHoiK5zlSrHzQ/s320/IMG_1459.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #990000;">Cam received over 50 get well cards from the kids at both schools, he clearly has no shortage of friends. </span></td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMnwcfHv9QRCBEZXC1NBfJmnPsfWMoQmtwhpf4c8S4CedkMz25klk-gO62ctjtOVZZWrvO_viGrXLriJpwHqh67NCfTiZGqnh2H8-eDUQB-LqOg9M6NhZePyF-6PnN71VcJjgtr8y83N3a/s1600/IMG_1462.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMnwcfHv9QRCBEZXC1NBfJmnPsfWMoQmtwhpf4c8S4CedkMz25klk-gO62ctjtOVZZWrvO_viGrXLriJpwHqh67NCfTiZGqnh2H8-eDUQB-LqOg9M6NhZePyF-6PnN71VcJjgtr8y83N3a/s320/IMG_1462.JPG" width="320" /></a></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjXtpnsUCgum-iwD_hvYJucgp5NpnwF1UN38a4Ehvlw3MwWeJXdbdLYVvwTEdRWGH4njxPwx5dXpdEXSMwTG8U9-cWV30yGlnT3272x1rMOTeReNTsWJ4vteUcoSh9OBPtLGBQQBkEWbhz/s1600/IMG_1474.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjXtpnsUCgum-iwD_hvYJucgp5NpnwF1UN38a4Ehvlw3MwWeJXdbdLYVvwTEdRWGH4njxPwx5dXpdEXSMwTG8U9-cWV30yGlnT3272x1rMOTeReNTsWJ4vteUcoSh9OBPtLGBQQBkEWbhz/s320/IMG_1474.jpg" width="240" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #990000;">The firefighters bring Cam home :)</span></td></tr>
</tbody></table>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkvmW8vlHCWB2Qj9yIXecFMEmRi-rhVlgZwta1MUbVzVMIGtCWD5BDHNwplCV0TGIIm_1BfUltXE31KTmFPG5eozAA0LGYr7P3uUL5FFRJIs2HndjzuMsP_v5ieuIT6zfJk9kdrSaJZPdr/s1600/IMG_1468.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkvmW8vlHCWB2Qj9yIXecFMEmRi-rhVlgZwta1MUbVzVMIGtCWD5BDHNwplCV0TGIIm_1BfUltXE31KTmFPG5eozAA0LGYr7P3uUL5FFRJIs2HndjzuMsP_v5ieuIT6zfJk9kdrSaJZPdr/s320/IMG_1468.JPG" width="320" /></a> </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW2G2fMKFD6vUluExOYr4Ypb1n6jWB1ta0AxWBfAeMmLOqcWlI7Ab4XCGcelQ66C8hWOKpjLH49kSK4eky4048MShZlC3gs17nH-fcrMuwtg2BK7NwdWyENBaBVoym5-SU1oaXoUJWIq5v/s1600/IMG_1482.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW2G2fMKFD6vUluExOYr4Ypb1n6jWB1ta0AxWBfAeMmLOqcWlI7Ab4XCGcelQ66C8hWOKpjLH49kSK4eky4048MShZlC3gs17nH-fcrMuwtg2BK7NwdWyENBaBVoym5-SU1oaXoUJWIq5v/s320/IMG_1482.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #990000;">Cam thought he was ready to get back to his old habits, unfortunately it only lasted 10 minutes before the pain and dizziness kicked in. Seeing Declan brightened his day, even if only for a moment.</span></td></tr>
</tbody></table>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> As Cam came out of surgery we were informed that they were unable to do the spinal block, which would have kept Cam's legs numb for 6-10 hours after and allowed him to be comfortable for what would be the worst pain immediately following surgery. Instead when he came out the pain was terrible and they gave him 1 dose of toradol and 2 doses of morphine within the first 30 minutes of him waking up. All was fine until all of the meds and the general anesthesia wore off all at the same time and within minutes we were way behind controlling the pain! This turned into the longest, hardest 2 hours of our lives. There is nothing worse than witnessing your child in pain and not being able to take it away. I have never seen Cam in so much pain before, he would look us in the eye and say " help me mommy, help me daddy!" "do something" " take my pain for me please mommy" I didn't know what to do or say. The nurses were in and out, on the phone with the doctors, desperately trying to figure out what to do. Meanwhile Cam laid on the bed screaming and crying like I'd never seen. After what felt like an eternity they finally gave him enough valium and morphine to knock him out. After this episode the pain management team came in and hooked Cam up to a PCA (patient controlled analgesic) and he could administer a small dose of dilaudid every 8 minutes. This along with a large dose of valium and hyacet every 4 hours seemed to keep the pain under control. We ended up staying a second night in the hospital for pain control. By Thursday afternoon they removed the pca and started him on Roxicet, which is stronger than the hyacet. At this point, I am missing my Cam. He is not himself, does not remember things, can't talk and just wants to sleep. Friday comes around and it's time to head home. The amazing firefighters from Palos picked Cam up in their ambulance and drove him home. We had numerous offers to help get him home and we are grateful for all of them. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> Since coming home we have seen very few moments of "Cam" which is the hardest part. His contagious smile has been wiped away, his witty personality and amazing sense of humor are gone, the light in his eyes that touches your soul is dark and he is in a constant state of pain, uncomfortableness, sadness and regret. We are trying our best to get him off the strong pain medication, but cannot seem to find a balance of comfort and medication. We go from tears of pain to completely sedated and sleeping. The entire process is taking a toll on everyone mentally and physically. Cam's body cannot handle the downtime for much longer before we end up in a place where no amount of rehabilitation will bring him back. All of this will be for not if we don't start making some progress. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> His spirits are low, lower than I have ever seen them. Tonight he had a very tough conversation with Kevin and my mom while I was in the kitchen trying to take a breather and recover from the hours of crying Cam had been doing over pain, frustration and sadness. Cam has always been the kid that told us he was OK just how he was and never seemed to care that he couldn't play sports or run like other kids. I think we always knew deep down that somewhere there was a part of him that cared, well there is! Tonight as he was working through his pain and frustration he discussed his regret about doing the surgery, wishing he could go back because it wasn't worth it, he let loose. He told them that he just wants to be like other kids, he wants to play sports, he wants to feel the grass between his toes as he runs across the yard just once, he wants to walk on the beach and feel the sand between his toes. He said he wants to be a daddy one day, but never can because you have to walk to be a daddy. He doesn't want to be broken anymore..............</span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> I am not sure if he will remember that he told us all of this, but there is a part of me that is happy he got to let it out and a part of me that wishes we never had to hear it! Every time I think about it it brings tears to my eyes and my heart breaks all over again. The last 5 days have been unimaginable. I think if any of us knew that it would be like this we would have made a different decision, but I just keep going back to "everything happens for a reason." In this moment I can't tell you what that reason is, my thinking is fogged by sadness, heartache, frustration and anger. I know that we will come together as a family and work through this, but the road is rough right now. I only hope that we turn a corner, the clouds recede and Cam can begin an amazing road to recovery very, very soon. I hope that he is not disappointed with the results and that he can have the chance to feel his feet beneath him again even if it's for a moment. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> The thoughts, prayers, love and support are what keep us going, so keep them coming because we have to keep going. </span></div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-52017817172902348572013-10-03T22:29:00.001-05:002013-10-03T22:29:35.488-05:00Surgery is right around the corner!<div style="text-align: center;">
<span style="color: #990000;">Well, October 9th is not too far off and with the days passing like hours it will be here before we know it! Last I left off we were going for an evaluation at RIC to see if there were any other options left besides surgery and the answer was a resounding NO! They brought in some equipment for Cam to try to see if he could tolerate standing with his contractures and he was in too much pain to even last for a few minutes. Basically we all came to the conclusion that if he wanted to stand again, surgery was our only hope, so October 9th here we come! </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> At this point, we are all ready and just want it to be over, the anxiety seems to build more and more everyday as we wait. Cam is ready, in fact as we were waiting for the bus on Monday he said " why can't my surgery just be on Monday so we can get it over with!" I agree with him 100%, I just want Wednesday to come and go as quickly as possible. He seems to be dealing with it very well. He has had a lot of questions for me and seems very open about it, which is a huge step for Cam. He even told me that he has told almost all of his friends at school that he will be having the surgery and returning to school with casts on for a few weeks. Somehow the fact that Cam is OK with everything makes it just a little easier for us. </span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">Basically the plan is this......</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">Surgery October 9th, typically they keep us just one night until the pain can be managed with prescription meds that we can give at home. From there Cam will wear straight leg casts for about 3 weeks. (He is really not looking forward to that part). On October 29th we head back downtown to get his casts off and immediately check in to RIC for 2-3 weeks of inpatient rehabilitation. Cameron will see PT and OT for approximately 3 hours a day in order to try and rebuild the strength he lost during his downtime. Our goal is to get Cam to a point where he is comfortable in a stander, which we are hoping should be in by the time we get home. (<a href="http://www.leckey.com/products/mygo-stander/" target="_blank"> http://www.leckey.com/products/mygo-stander/</a> ) Cameron has set his mind to stand on his own and wants to try his best to walk again! He seems very determined to make this worthwhile so we are behind him 110%. I hope that the results live up to his expectations and that his pain is not too great. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">As for Kev and I we are hanging in there. I think we are doing as good as any parent in this position would be doing. We have our sleepless nights, our days where we are feeling down, our days where the anxiety seems to be all you can focus on, our days where we feel hopeful of the results, and our moments where we are so proud of Cam that nothing else matters. We have remained open with each other about our feelings and emotions and tried to be understanding when the other is having a rough day, but let me tell you, it's not easy. We have our moments where we both fall off the wagon at the same time and we look at each other and aren't sure who is going to take the first step to help the other one back on, but somehow we pull through. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">We are blessed to have an amazing support system of family and friends that are always there for us in moments like this, and for that I thank all of you, relationships like those are priceless. I have a great deal of confidence in the team of doctors that will be with Cam on this journey and know that they too only want the best for him. The next 6 weeks will bring a series of physical, mental and emotional challenges for all of us, but I know that together we are so strong that nothing can stop us from pulling through. </span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<br /></div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-27816763533382128252013-09-15T16:12:00.002-05:002013-09-15T16:12:23.265-05:00Feeling inspired<div style="text-align: center;">
<span style="color: #990000;">So after a long day the Lurie last Tuesday we left feeling confused and unsure of the plan and Cam was angry at the world! We first saw a new Orthopaedic Surgeon and really liked her. She completed a full exam on Cam, then brought her partner in to verify her findings and they both agreed that Cam would definitely benefit from surgery. Cam put on his headphones as she began to explain the process to us. </span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">They would go in from behind his knee and release his hamstring as well as his knee capsule (this contains the tendons that seem to be a root source of his problem). He would stay in the hospital for just 1 night assuming they can get the pain under control and he doesn't have any complications. From here they would put him in straight leg casts that he would have to wear for approx 3 weeks. During this time he would be recovering at home and able to return to school using a wheelchair that was properly equipped to hold his legs up. After 3 weeks we would return to RIC (rehabilitation institute of Chicago) where they would remove the casts and begin 2 weeks of intensive inpatient therapy in order to help Cam regain his strength and ensure the tendons are properly stretched. Kevin and I were expecting this information and we felt good leaving the room. The doctor seemed confident based on Cam's other success from soft tissue surgeries that he would recover great and see good results. As far as the results go we could expect to see Cam use a stander and possibly stand on his own for a few minutes at a time. Walking seems to be a long shot, but I am not ruling it out! When he underwent his hip release in 2007 they told us he would never walk again and he walked for almost 5 years after that. I don't want to set myself up for disappointment, but if I was being honest there is a little piece of me that gets butterflies in my stomach when I think of him being able to take just 1 step. :)</span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">From there we headed to the rehab doctor to discuss equipment.........As if my house wasn't full enough! She performed a rather quick exam and began talking about how she felt that if our only goal was to get him in a stander that we don't need surgery???!!!!! What???!!! We just left feeling confident about our plan and this lady just threw us all for a loop! My stomach began to churn, I was on the verge of tears and feeling overwhelmed once again. I took a deep breath, gathered my thoughts and began to try to listen to her with an open mind, even though I wanted to scream obscenities at her! She then begins to tell us that they may be able to make a stander work based on his level of contracture (inability to straighten his leg) but that we would need to go see the PT at RIC in order to determine if this was an option. All in all I am not sure that she was much help since by the time we left we were utterly confused and referred to a PT for everything we thought we were seeing her for. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">In the following days we had a conversation or two with Cam and he just simply responds by crying and being mad. He is clearly upset at the idea of surgery, and who can blame him, and says he is perfectly happy using his wheelchair and does not want to walk or stand again. The doctors keep telling us that his drive to stand and walk again will play a huge part in his recovery and at this point we are unsure if he has that drive. We kind of tabled the conversations to let things settle in a little and meanwhile scheduled an appt at RIC for an evaluation to see what our options might be without surgery as well as scheduled the surgery for October 9th in the the event that the PT does not have a better solution. Cam does not know it is scheduled yet as we do not want to upset him any more until we know for sure we are going forward with it. </span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">Now here comes the "feeling inspired" part.......</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">Today Cam and I were in the car headed to lunch and I told him he didn't have to go to school on Thursday and he responded with disappointment "another doctor appointment?" I went on to explain that we were seeing the PT to see if he could use a modified stander and use it without doing surgery and he seemed to perk up a bit. Then we were sitting at lunch and he brought up the subject again so I asked if he had given any more thought to our conversation the other night about wanting to stand and walk again and here was his response</span></div>
<div style="text-align: center;">
<span style="font-size: large;"><b><br /></b></span></div>
<div style="text-align: center;">
<span style="font-size: large;"><b> "I did, I want to walk again. Even if it means surgery I think it would be worth it. I will be crabby when I have to wear the casts, but it will be worth it" </b></span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">I wasn't sure what to say as I really wanted to break down in tears of joy as we sat at Target eating pizza. I actually had to say it back to him to clarify that I heard him right and he confirmed that he was ready to do it. ABSOLUTELY AMAZING!!!! I don't know how he does it, but somewhere in his mind he has once again forced the positive thoughts to the front and made a decision that I'm not sure most adults could make. He has accepted the pain and hard work as a pay off for ability to see the world from 51" tall and the potential to take a step, even if its just one. Still to this moment 4 hours later, I want to cry. I have tears in my eyes and my hands are shaking as I write this. I am so proud of him and hope that I can harness even 1 ounce of his strength through this process. </span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">So barring any major changes to the plan we will be headed to Lurie for Surgery October 9th and be praying that the pain and hard work pays off for him. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">Love this kid!</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHA3XS90QgLU-lYEof2AlKlm3WBqQN0Yr7LcCKL0aBWliVBsdKPFPWGzQO-zS2wvnCkYl3rxZPuyvip2Vkhvr5YXmnpkrcOo_k9gXrsTpvOTZg_I9DpMscRQPnaElxd6En3TyG0prc0EY6/s1600/DSC01819.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHA3XS90QgLU-lYEof2AlKlm3WBqQN0Yr7LcCKL0aBWliVBsdKPFPWGzQO-zS2wvnCkYl3rxZPuyvip2Vkhvr5YXmnpkrcOo_k9gXrsTpvOTZg_I9DpMscRQPnaElxd6En3TyG0prc0EY6/s320/DSC01819.JPG" width="320" /></a></div>
<div style="text-align: center;">
<span style="color: #990000;"> </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com2tag:blogger.com,1999:blog-8984823624431420398.post-14327950426267242202013-08-28T20:58:00.000-05:002013-08-28T20:58:02.560-05:00I want off the train!!!!!<div style="text-align: center;">
<span style="color: #990000;"> So all of you that follow this have heard me refer to our life as a series of peaks and valleys, traversing the mountains and making our way from the bottom to the top over and over again, well right now I feel as though we are riding a high speed train through those mountains and I WANT OFF!!!!!</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;"> Things have been so crazy lately, the days seem to fly by like hours. In fact as I logged in to write tonight I couldn't believe that my last post was 6 weeks ago!! I feel like it was last week. I guess I have a lot of catching up to do..........</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<b><span style="color: #990000;">Where to begin.....</span></b></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;"> Life has thrown us some great news, some tough news and some wild curve balls that I'm not sure what category they fall in so I will leave it up to you to place them for me. As I left off last time we had left the "decision makers" office and were awaiting his news on what type of procedure they thought would be best for Cam so two weeks passed and I reluctantly called the Dr.'s office. The verdict......He would like us to be evaluated by 2 other Orthos before making any decisions. While I very much appreciate the fact that they are being extremely thorough and making sure it's exactly right, I also feel like we are prolonging the inevitable and let's just get the ball rolling so I can get rid of the knot that has been resting in the bottom of my stomach for a month. I have made the appointment to see the next 2 doctors for Sept 10th and we will see where that goes.</span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> Meanwhile we went on a tour of the local public school to see if Cam liked it and wanted to change schools in order to get more assistance. It was GREAT!!!!!!! Cam loved the school and made his decision as soon as we got in the car. He was so excited we went to get school supplies right away. Kevin and I both felt very comfortable with his decision as well. It was hard to leave the family that we have come to know and love at St. D, but they all understood our choice. With changing to public school Cam will have greater accesss to assistive devices as he needs them for things like writing, he will have an aid with him whenever he needs them as well as have PT and OT as needed right at the school. The special education coordinator has been very helpful through the process of writing his 504, of which is still in the works ( what a process!). He is riding the bus for the first time ever so that has been a BIG change for all of us. I think moreso for Kevin and I, for the past 5 years we have walked him into class, hung up his coat and put away his backpack. Now, he gets on the bus and off he goes. His first week is coming to a close and he comes home everyday with a smile and talks about how much he likes it. It helps that his best friend is in the same class :)</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFyWHccvp-7mKPTn5CbbV7PahxzR-QwsFrfIfzdGC9wE0QBSgssPicwaIv73cWBwg1f68mgnnfGNWTBe7oHp94qb1BbZ7F9YKOZ3F6aJvJYUwOSaZbvb5jFC1oWnaCwZXeQU8glFEUzCGA/s1600/IMG_1335.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFyWHccvp-7mKPTn5CbbV7PahxzR-QwsFrfIfzdGC9wE0QBSgssPicwaIv73cWBwg1f68mgnnfGNWTBe7oHp94qb1BbZ7F9YKOZ3F6aJvJYUwOSaZbvb5jFC1oWnaCwZXeQU8glFEUzCGA/s320/IMG_1335.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4eh5m-glYWcDW3H_aw69AYfO12eOs2L0DtOgi5P-Hq6-zOieDqm70lANcMIj5xKXJHWlk3Sd3sYNJ5YSrI-RicRUJd4y7nIR0HZlVQ7mJsKagGXzeMk1_T42KyELFpCiTmqTlZf1JBlIT/s1600/IMG_1338.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4eh5m-glYWcDW3H_aw69AYfO12eOs2L0DtOgi5P-Hq6-zOieDqm70lANcMIj5xKXJHWlk3Sd3sYNJ5YSrI-RicRUJd4y7nIR0HZlVQ7mJsKagGXzeMk1_T42KyELFpCiTmqTlZf1JBlIT/s320/IMG_1338.jpg" width="240" /></a></span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> At the beginning of August we went for our first MDA clinic at Lurie and the first person we saw was the "wheelchair guy" and boy was that an interesting way to start the day. Here we are so excited that Cam has just decided to go to public school and ride the bus, only for him to look at us and ask with a puzzled look " Is he taking this chair?" and we of course replied with a yes, that is the only chair he uses, why do you ask? He continues to look over the chair front and back and proceeds to inform us that they will not let him on the bus because there are no transprotation hooks on his chair.....WHAT???!!! School starts in 10 days. So we ask how we go about getting said transportation hooks and he replies " you can't, they have to be drilled into the frame at the factory." Hold the phone.......excuse me..... what was that.....are you being serious right now??!! A true moment of panic has now set in and we are only 30 minutes into a very long day at clinic. At this point we are crossing every finger and toe we have, not calling the bus company and hoping the dirver doesn't say anything when she picks him up, atleast not until we figure this out. So on we go to the next doctor and the next and the next and if I was being honest, I'm not sure I remember anything after the wheelchair hook conversation. So that was clinic.</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;"> Then came vacation, oh glorious vacation. Sunday afternoon rolls around, the camper is loaded and ready to go and we hit the road! We had an amazing week in Missouri camping with Kevin's parents. Lake of the Ozarks was so much more than any of us expected. We took Cam into a cave that was completely handicap accessible, totally awesome experience! We met some amazing people that were camping down by the water that just so happened to have extra kayaks and took us out everyday! Cam loved riding in the front of the Kayak with our new friend and I happily paddled along side him while we took in all the sights from the water. Brad, our new friend, was a wealth of knowledge about the area and everything in it. He taught Cam about all of the wildlife and plants while we paddled around. We saw waterfalls, herons, king fishers, turkey vulchers and even a bald eagle. It was probably one of the best family vacations yet! </span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii2pvqOoFVmOoOEVTVIQoJc9zAjhvSkfFf4IaWXWvuVEXe5t-gw_JMVNFrsM66Fd3SDEv-x-haFsQt27e1Tql0fGEJ9vZJmVtRH1wjBxMnk9zQXZcxIcsdpIANBXpJnFWo3aAbAvwDU0cN/s1600/IMG_1299.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii2pvqOoFVmOoOEVTVIQoJc9zAjhvSkfFf4IaWXWvuVEXe5t-gw_JMVNFrsM66Fd3SDEv-x-haFsQt27e1Tql0fGEJ9vZJmVtRH1wjBxMnk9zQXZcxIcsdpIANBXpJnFWo3aAbAvwDU0cN/s320/IMG_1299.JPG" width="320" /></a></span></div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5zq2gyhxY0xPZEyBgCXTIe3cPR7R6cGD3jHntur91Tzatgqkr9-G6djudOSv8fr_Hcso-lf_lA0dxZaHZcy7ir_K8fpP8uJ4mu4jrgHCTr-kYBataUAKGIJPN20TsVmH-n2ogrBdMsDo4/s1600/DSC01698.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5zq2gyhxY0xPZEyBgCXTIe3cPR7R6cGD3jHntur91Tzatgqkr9-G6djudOSv8fr_Hcso-lf_lA0dxZaHZcy7ir_K8fpP8uJ4mu4jrgHCTr-kYBataUAKGIJPN20TsVmH-n2ogrBdMsDo4/s320/DSC01698.JPG" width="320" /></a></span></div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGLToytRSYrt2eO64Xk952fYm-bCzv1_ry49or5MvapYoxXWcstxo7xbozlcJbVfh8KK6yDA2T2wKJAw4YyZOO-FhksqKzgYxu3UyhCzt8dR8ypG5kRVqJWk6WHZMQAoO-hUhnWwE8EIle/s1600/DSC01797.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGLToytRSYrt2eO64Xk952fYm-bCzv1_ry49or5MvapYoxXWcstxo7xbozlcJbVfh8KK6yDA2T2wKJAw4YyZOO-FhksqKzgYxu3UyhCzt8dR8ypG5kRVqJWk6WHZMQAoO-hUhnWwE8EIle/s320/DSC01797.jpg" width="212" /></a></span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;"><b>Then it was back to reality, and boy did it hit hard! </b></span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> We had given Cam a reward for doing so good with his boosts that he didn't have to bring his pump on vacation. He had gained 10lbs when we saw the dietician at clinic. YAY!! Shortly before we left for vacation he seemed to be having a little trouble in the mornings with his stomach being upset so we adjusted the volume and the rate trying to fix the problem and to no avail. When we returned from vacation we started back up and same thing, his stomach would be upset when he got out of bed. The first day of school we attributed it to nerves, so we tried again the next night and same thing. This contiued for 2 more nights and finally we said this is crazy, we need to call and find out what to do. All the nutrion he's getting at night is coming back up in the morning and he's not able to eat breakfast! I spoke with the dietician this week and she advised us to stop the feeds and come in for a weight check in 2 weeks to see if he can maintain without the g-tube feeds now that we got his weight up. Cam was pretty excited at the thought of no more g-tube feeds so keep your fingers crossed that he maintains weight or its back to the drawing board. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> This past weekend we attended our first MDA Harley Davidson ride. They surprised Cam with a sidecar!!!! He was so excited, we had no idea that he was going to get to go on the ride in a sidecar. The whole day was amazing. The HOG chapter is full of amazing people who not only donated their money, but their time away from their families to spend a day raising awareness and money for families like us. We owe a huge thank you to Andrew who was kind enough to bring his 1971 third generation BMW out for Cam to ride in. It was truly a once in a lifetime experience for Cam and a heartwarming experience for us. </span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both;">
<span style="color: #990000;"></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirc9EbPKpABgkb2aL6b1xYD0z_d_mgpQgiB3UxV30oZ7VBe9OyyPz9Wv3VG6P0cTEzg90qLxsXr-_5dzAhlHIyR-980opHg9omuYpVnFjqNDNYnjrUEeIPptlkKpFDe538KZ5KaVulYD_3/s1600/IMG_1378.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirc9EbPKpABgkb2aL6b1xYD0z_d_mgpQgiB3UxV30oZ7VBe9OyyPz9Wv3VG6P0cTEzg90qLxsXr-_5dzAhlHIyR-980opHg9omuYpVnFjqNDNYnjrUEeIPptlkKpFDe538KZ5KaVulYD_3/s320/IMG_1378.JPG" width="320" /></a></div>
<br />
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #990000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFD6b-qoOHc8wHvhQsaF5YqRXWbmWOpaF0FQ5DX_6YGv_-kkXTnAS_JF7F8MUhH9m3dwcPLLfhh7l6tefPuelK5PmfvwVe-nszeRg4Dk2Xm8IVKQRiBJTY5KJYPFsMq2HrkQxjb6S6uEzO/s1600/IMG_1379.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFD6b-qoOHc8wHvhQsaF5YqRXWbmWOpaF0FQ5DX_6YGv_-kkXTnAS_JF7F8MUhH9m3dwcPLLfhh7l6tefPuelK5PmfvwVe-nszeRg4Dk2Xm8IVKQRiBJTY5KJYPFsMq2HrkQxjb6S6uEzO/s320/IMG_1379.JPG" width="240" /></a></span></div>
<div style="text-align: center;">
<span style="color: #990000;"> </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> </span></div>
<div style="text-align: center;">
<span style="color: #990000;"> Tomorrow the respiratory therapist will be coming to teach us all how to use Cam's new cough assist machine. For now they want him to use it a few times everyday until we go back to the pulmonologist for follow up in 2 weeks. Hopefully he will only be using it when he is feeling congested, but it seems like maybe they want him using it daily, again I was only half there at this point at clinic. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> In the meantime I received some very disappointing news at work and am still trying to convince myself it's for the best and that there's a reason it happened, or didn't in this case. I don't know, I want to give up and turn my back on the company that I have invested so much time and energy into, but at the end of the day I know there are people there that rely on me to be there and be their leader and I can' t turn my back on them. My job isn't always ideal for family life, but for the most part it makes me happy, I love what I do and to me that means the world. So at this moment I cannot change what my company has decided to do, I cannot right the wrongs of the people in it, I can only control what I do and that's to continue doing what I love and take the rest in stride.</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;"><b>And to think we've only been back from vacation for 10 days!!</b></span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;"> I am ususally always a glass half full kind of person, but sometimes it
is hard to see the positive side when you feel like every time you get
up, you get knocked back down. I have had a few days lately where I
just wonder who I pissed off upstairs to deserve such a hard path, why
can't things be just a little easier. Then I wonder, would I be bored
if they were easier, is someone appealing to my need for constant
challenge, is this what my competitive nature when I was young brought
on? I don't know, I am not sure that anyone knows why we are dealt the
cards we are. I guess all I can do is continue to push myself through
becuase at the end of the day, there are a lot of people relying on my
strength, love and positivity to get them through. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">But it wouldn't hurt if they would slow the train down so I could enjoy the scenery! </span></div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com1tag:blogger.com,1999:blog-8984823624431420398.post-55318971112939037902013-07-14T23:52:00.000-05:002013-07-14T23:52:57.065-05:00The appointement with the "decision maker" aka the Ortho So last week we had our first appointment with our new Orthopaedic surgeon at Lurie Childrens. I call any Orthos the decision makers because every other doctor we see tosses around options and ideas, but the Ortho brings those ideas and thoughts to action. Most of the time as we prepare for our appointments I am fairly relaxed, except when we are seeing the Ortho. My stomach was in knots for 2 days and sleep was not restful because we kind of knew what was coming............that dreaded word..........SURGERY!!! When we last saw the neuro, she tossed around the idea that Cam seemed to have enough muscle in his legs to support his small, yet very tall, body but since he could not straighten his legs all the way he is too far off balance to stand. So once again, I knew that it would fall into the hands of the Ortho who would make the final call to do surgery or not. I spent a few days researching it and found lots of useful information, but I still was not happy with the idea of Cam having a 2nd surgery this year :( Some where in me I was secretly hoping he would have a different answer, even though deep down I knew what was to come.<br />
<br />
Muscular Dystrophy causes key muscles and tendons to contract and therefore they eventually become shorter and shorter until you can no longer use them properly. The first place this usually happens is in your heels, Cam has already had both of his heel cords released ( a surgery where they cut the tendon, then cast him until they grow back at the proper length) , then it can move to the hips where there are 4 separate tendons. Cam had these done too, back in 2007 he had what they call a bilateral hip release and we spent 4 weeks at Hope Childrens in inpatient rehab. It was a quite painful surgery because the tendons in the hips tend to go pretty deep and he had all 4 on each side released! Then it heads off to the knees, hamstrings and can even affect the elbows. So that brings us to 2013 and Cam's inability to walk, transition and even stand on his own anymore. This has happened so fast, literally over the last 6 months he has lost all ambulation on his own and now doctors, and parents, start to worry about so many other things. Once a person becomes non-ambulatory they are at risk for a number of problems with muscle atrophy of your major organs, scoliosis, heart trouble, pulmonary issues and a laundry list of other things that quite frankly I can't bring myself to think about. So here's where we are.........<br />
<br />
Cam's doctor has suggested that he have a hamstring lengthening ( http://www.livestrong.com/article/141053-what-is-hamstring-lengthening/ ) done in combination with a knee release. Now comes the part that was a little overwhelming, thankfully the doctor will be consulting another Ortho and they will make the decision about the best way not us! There are 3 different methods they use to achieve the same result, a fully straightened leg. One option is similar to what they did on his hips where they do in with an incision on both sides of each knee and cut the tendon so it can grow back longer, this is called a tenotomy. ( http://www.surgeryencyclopedia.com/St-Wr/Tenotomy.html ) The second option sounds quite interesting to me, the will make a small incision above each knee cap and place 2 screws in the upper growth plate of the leg in order to stop the top portion from lengthening while the bottom half continues to grow. ( http://eight-plate.com/treatment_overview.php ). The third option seems less than desirable if you were to ask me, they would make the incision below the knee cap, break the bone away from the knee joint and reattach it at an angle that would create a straight line with his upper leg so as he grows it would grow at that same angle. Honestly, I'm not fond of any of them, but I am trusting of his team of doctors and have hope that he could stand on his own again, even if for a few minutes at a time. We will be talking with the Ortho in about 2 weeks to discuss the best option as he and his partner see it and I guess, get surgery scheduled for sometime this fall. <br />
<br />
Another big decision lies on the horizon that is approaching rapidly.........what to do about school??? So Cam has attended private school for the last 5 years and they have been wonderful! It is a great school with amazing teachers, parents and students and they have made so many modifications to help fit Cam's needs. Unfortunately now with his inability to stand, he can no longer use the restroom without assistance and this creates quite a problem. Many suggestions and offers of help have been made by his current school and Cam is not so sure about how they will work so we are debating the idea of switching him to public school. In the public school system they would provide him with a personal aid when he needs one throughout the day to assist with things. Oddly enough Cam seems somewhat excited to visit the school and check it out, which is not normal! It is a big decision for all of us because as parents we feel a great deal of comfort where he is at and are very nervous about sending him anywhere else. We have not come to any conclusions yet, but need to get going on it as school is coming fast! <br />
<br />
At this point in time, I have fully accepted that Cam will never walk down the hallway at school again, or even across the room, but I am very thankful that he was blessed with the opportunity to experience those things. We were given a great opportunity in 2007 to do the hip release and at that time they said Cam would never walk again so stranger things have happened and he could prove everyone wrong again. Those of you who know Cam's story know that 8 weeks after surgery he walked again! After such great success it's very hard not to have the highest of hopes for this time around, but I fear that I cannot handle the disappointment if his success is not as dramatic this time. For now I will only hold hope that he can simply stand on his own again and feel his feet beneath him touching the ground and supporting his body. <br />
<br />
Each morning when you swing your feet over the side of your bed and feel them hit the ground, don't take it for granted. Be happy that you were blessed enough to survive one more day and one more night in this crazy world and you can stand on your own two feet and carry yourself wherever you want them to take you!<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-69656343277876275352013-06-20T22:02:00.001-05:002013-06-20T22:03:58.942-05:00Things that should be so fun.....<div style="text-align: center;">
So we set out today with a plan, we were going to get supplies for our new fire pit, get groceries and then head to the pool to sign up for our season pass and get our swim on! Sounds great right? Well the first few things went OK, Cam and I even stopped at Five Guys for a hot dog and some seriously amazing fries. Then it was off to the pool, Cam was so excited about getting a pass so we could go whenever he wanted, swimming is one of his favorite things to do! I can not even imagine how amazing it must feel to be able to walk without struggle, jump up and down and feel your legs beneath you holding you up. He just smiles from ear to ear when he's in the water and bobs up and down. He can hold his breath longer than anyone I know too!! So we arrive at the pool, of which we had never been to, and I could see Cam's disappointment before we even parked the car. The pool was much smaller than he had hoped and left a lot to be desired. I put on a smile and said "let's go check it out, we're here and I want to swim!" We went in and just paid the daily rate so we could make sure we liked it before we committed. We get all ready to go. Goggles....check, swim shirt.....check, into the pool we go. Much to our surprise it was FREEZING!!!! Cam's worst nightmare. He is so thin that if the water is not warm, he cannot be even get in for a minute without shivering and his lips turning blue. He tried twice to get in, but just couldn't stay in even up to his knees for longer than a minute. So we packed it up and headed out :( No pool pass for us this year. </div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9Z-gXlPf0ZWY7Hyv5OIXC6-Poo1pyGo-ky8Ds0fkX7qEHkQ1iY7rInKTM1HdULzgbFLw2vBz97iYzxMjZ6S5OpE7Q446rG14D6GVrmMYvZcpFGOcb6xqAsTjvtULiTg7njPL8Czg3AwZ-/s1600/103_0353.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9Z-gXlPf0ZWY7Hyv5OIXC6-Poo1pyGo-ky8Ds0fkX7qEHkQ1iY7rInKTM1HdULzgbFLw2vBz97iYzxMjZ6S5OpE7Q446rG14D6GVrmMYvZcpFGOcb6xqAsTjvtULiTg7njPL8Czg3AwZ-/s320/103_0353.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ever since he was a baby he has loved the water!</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuAH5QCejRvbLKdpfLantbhyphenhyphen3q3qYMotQQbOw9C2t9T5ByefexeEjush5nYioJKjbYxLMcJz-ifkHzNuGC8RwKJllAGQwCgjraupDJXyLst6W5WRVQI5lbjFbdnR8pmhJXtqEufFQ1Th66/s1600/DSC_0352.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuAH5QCejRvbLKdpfLantbhyphenhyphen3q3qYMotQQbOw9C2t9T5ByefexeEjush5nYioJKjbYxLMcJz-ifkHzNuGC8RwKJllAGQwCgjraupDJXyLst6W5WRVQI5lbjFbdnR8pmhJXtqEufFQ1Th66/s320/DSC_0352.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grammy and Grampy always cranked up the heater for Cam!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_Gmjmlyqv7gqh4qdCsFEhAndl5AsabN8JJ6_BQiIdYbJeSHB3s5kMLoBr3uJZ0OjmP5ygQOo8yOR7tFUrfVMBWSsItbFc7JLUWrUOdJ5mXtJWezTh_U9tkaa7O5QHaAocpL1WW2T36qj_/s1600/DSC_0361.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_Gmjmlyqv7gqh4qdCsFEhAndl5AsabN8JJ6_BQiIdYbJeSHB3s5kMLoBr3uJZ0OjmP5ygQOo8yOR7tFUrfVMBWSsItbFc7JLUWrUOdJ5mXtJWezTh_U9tkaa7O5QHaAocpL1WW2T36qj_/s320/DSC_0361.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">As long as he is warm, he is smiling!</td></tr>
</tbody></table>
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<br />
<div style="text-align: center;">
Then I had a thought as we were getting in the car, I cancelled my Lifetime membership, but it is good through 7/1 so we could go swim there. Smile back on :) We arrive at lifetime, get all ready to go and we head into the pool. The water is quite a bit warmer so Cam begins to bob up and down, stand on 1 leg, jump and bounce and attempt to tread water.....all the things he can't do out of the water. He is so happy in the water, it melts my heart to watch the smile on his face and his excitement when he says "look at my feet Mom, I can bounce from one foot to the other!" It's amazing how one moment can make you realize all of the simple things in life we take for granted each and every day. Then he was getting tired so I scooped him up and sat him on the edge, before I knew it they were blowing the whistle at me telling me he couldn't sit there. We headed to the steps so he could rest for a minute and again, before he could get a moment to rest they were blowing their whistle again! He can't sit there either!! Seriously, you can't sit on the edge to take a break! Cam said he was ready to go back in, but when he did his legs were just too tired so he asked to go back to our chairs. From the moment they blew the whistle I saw his frustration and disappointment and he was done, ready to go home. How can something so simple such as wanting to go swimming be so hard. Some days I don't know how he does it, I was broken today and I can only imagine how he must feel. We came home and he sat with his computer and smiled and laughed all afternoon. I guess that's his solace and I'm happy he has that, I only wish that he didn't have to face so much adversity every day. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
We ended our day on a positive note with steak on the grill, Cam's request, Jack Frost ice cream and he saw his teacher, which he was ecstatic about! </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Still to this moment he is sitting next to me, watching you tube videos and laughing out loud. I guess his laughter is my solace because it brings a smile to my face and my heart skips a beat every time I hear him laugh. </div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-78480355694765577922013-06-13T20:37:00.000-05:002013-06-13T21:12:56.283-05:00Wow........where to start????Well, sorry for the looooonnnnggggg delay between posts. Life has thrown us a few less than desirable curve balls over the past few months and I would like to say I took them in stride, but I didn't!! :) I have not been feeling very inspirational lately and never wanted Cameron's blog or the chronicles of our daily life to become part of peoples "pity party" or a "woe is me" type story so I just refused to post until I felt like I was ready. I have often found myself comparing my misfortune to other peoples and tying to make myself feel better about the things in my life because their life is harder or worse than mine. What I have realized is that this type of thought process gets you nowhere, you cannot find happiness or a positive outlook based on that fact that someone else has it worse than you. As much as I want to believe that it will help, it hasn't worked so I'm giving it up and going for a new approach. I have been asked a number of times when I was posting again, why haven't I posted etc and I have sat down multiple times over the last few months thinking the time was right and........nothing happened!<br />
<br />
So, that being said here we go..........<br />
<br />
Let's see last I posted we had just had a great couple of Dr visits, some really great test results and we found balance again as a family living with our new equipment. Well, remember those curve balls I mentioned earlier, they came flying at full speed and I wasn't swinging. Kevin went out for the first ATV ride with my dad and brother and proceeded to wipe out, break a few ribs and his collarbone. Well, for the average family this is a minor setback. A few missed days of work, a little less help around the house, but manageable. In a household with a disabled child, this my friends is a MAJOR setback. I immediately without hesitation fly back into complete and total manic control mode. So much for balance, it didn't exist, it couldn't exist. Kevin was in a lot of pain and I put on my nurses hat and got down to business. I even had some sympathy, and for those of you that know me well, you can pick yourself up off the floor now :) We pushed through the first couple of days with some unexpected pains and bumps in the road, but we were getting there. 10 days after the accident I was scheduled to leave for a girls trip to Vegas so Kevin's sister came in to help with Cam so I could go and take in a few days of relaxation so I didn't fall completely off the cliff, and I can't thank her enough. It was a much needed break, had a great time with lots of laughs and came home with a severely broken pinky toe courtesy of the lifeguard chair. :( Through all of this Cam has kept going about his daily routine and adjusted well to all of the chaos that has now become our life. We are blessed that he is so compassionate and understanding that he just rolled with punches. Everyday he had to go to before school, which he really dislikes, he went to after school everyday without complaint until I could get there, he played alone and patiently waited for me to get things taken care of before asking me to do anything. I know the days got long for him and some days he felt like a burden, but he always said he understood and was OK. My parents were a great help through all of this, picking Cam up and taking him to dinner, helping with the yard work, helping with laundry and housecleaning, without them we would be lost! We pushed through the broken bones and things were getting somewhat back to what we consider normal by mid May so I was finding my balance and we were pushing up the hill towards the peak just in time for summer.<br />
<br />
Mother's day was fantastic, we had brunch with my family, Cam made me some amazing gifts and Kevin made me dinner. Life does not get much better than that!<br />
<br />
As we approach the end of the school year Cam is really looking forward to the last day of school and very ready for summer break to start. The last day of school arrives and I always volunteer at the end of year picnic (field day) so I can help Cam get around and be involved in all of the activities. Every year we have a great time outside doing games and crafts, inside we dance to the DJ and Cam and I are limbo experts. This year was very different. We started in the assembly and things were great, Matt Wilhelm was doing bike tricks and talking about bullying. then it was time for outdoor play and things began to go downhill. Cam started doing a craft and eventually a few of the girls joined in, meanwhile all of the boys were wrapped up in their game of football and could not be interrupted. Cam had taken his manual chair and couldn't get out on the grass very well so he sat on the sidelines and watched. I stood by him and watched him get quieter and quieter by the minute. I asked him if he wanted to leave or do something and he said he wanted to stay for the DJ. Finally after a very long hour and a half of outdoor play it was time for the DJ!!! Off we went excited and ready to go, until we entered the lunchroom. All of the kids ran around dancing and singing and left Cam in the dust. While I understand it's not their intention, nor do they mean any malice, it still breaks my heart to watch. Cam's eyes began to well up with tears and fought real hard to keep them back, but I knew they were there. I looked at him and he said "we can go Mom, I'm ready." I was speechless, wheeled him out, gathered his stuff and off we went. The car ride home was quiet, but we had a lot to look forward to. I asked him several times if he was OK and he without hesitation responded "Yes Mom!" We were leaving that afternoon for our first camping trip, so I was ready to be home and start packing. I was happy to have the distraction because my heart was breaking for him. I have thought about that moment many times and wondered how many more times will he have to feel that way, even though I'm sure he hasn't given it a second thought.<br />
<br />
In the midst of this we learned that a member of our "fire fighter family" as well as a good friend to Cam, had chosen to take his own life. Try breaking that news to your 10 year old, NOT FUN! On Sunday evening we met with some of our MDA family to pay our respects and say goodbye. Cam was very quiet and kept to himself all day on Sunday, it was very hard to see him clearly affected by the situation, yet refused to admit it was bothering him. I think sometimes his strength and ability to deal with challenges gets the best of him and he refuses to admit when things are too hard. We arrived at the service and were introduced to his mom who had some very kind words for Cam and he began to cry. Finally he is showing the pain and man was it heart wrenching for anyone around to see this sweet little boy cry for his friend and not understand why it happened. It was a quiet car ride home and as we entered the house Kevin picked Cam up, gave him a big hug and Cam began to sob. We talked about things over dinner and spent the rest of the evening having family night watching Cam's favorite movie. All I could think was is the the end of the curve balls? Man I hope so!!!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMdUHyXqVm9xCz9Hn82P4OcYynceYzn3cxepk3cBAWiVX5piQYbiyXYAjOillJsunYi5P3ZYgZ-JIa6s6x4Sw4Qx-4g5qMrSBp9dhHnZB_45PaPmJ-GnAVf7sXK9lqOK_jUGWdLqYv6ebJ/s1600/IMG_1032.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMdUHyXqVm9xCz9Hn82P4OcYynceYzn3cxepk3cBAWiVX5piQYbiyXYAjOillJsunYi5P3ZYgZ-JIa6s6x4Sw4Qx-4g5qMrSBp9dhHnZB_45PaPmJ-GnAVf7sXK9lqOK_jUGWdLqYv6ebJ/s320/IMG_1032.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcyf_miH7VUy_EycihjCRcxUfmM7w0G2fDbdjLxhgobyyYO4VORwRxTHzv8UzErZoy-6TOHeMGS-yVj-jagr9mBlrj3uvWCgEHtP1pYqKGMWAkjQXy61SGpj5FQpbNO53ZWGx9QZiEeCZ5/s1600/IMG_1033.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcyf_miH7VUy_EycihjCRcxUfmM7w0G2fDbdjLxhgobyyYO4VORwRxTHzv8UzErZoy-6TOHeMGS-yVj-jagr9mBlrj3uvWCgEHtP1pYqKGMWAkjQXy61SGpj5FQpbNO53ZWGx9QZiEeCZ5/s320/IMG_1033.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBVf7jgKspdhKF6uDP-G-V2kYVk5JkqTffS1TpjYWK9OQdhRPQZOhyN0aPv1iFovVyVALiWXpxNis3ZzAbZWxW9SAsvAMWRVImFFo9UQqVSxMbof_6L2U6rn-V21e37uEGpj0YTEUS0AIH/s1600/IMG_1048.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBVf7jgKspdhKF6uDP-G-V2kYVk5JkqTffS1TpjYWK9OQdhRPQZOhyN0aPv1iFovVyVALiWXpxNis3ZzAbZWxW9SAsvAMWRVImFFo9UQqVSxMbof_6L2U6rn-V21e37uEGpj0YTEUS0AIH/s320/IMG_1048.JPG" width="320" /></a></div>
<br />
<br />
On Tuesday of this last week Cam and I headed downtown for a slough of tests and appointments at the crack of dawn. We arrived at the hospital and got started. They took and X-ray of every bone in Cam's body, kinda cool, then did a dexa scan to measure his bone density, then we headed to the lab where they drew an enormous amount of blood. At 9am we were done and had a break until we had to be back for another appointment at 1pm. Cam and I walked what felt like a billion blocks to a breakfast place that he likes then contemplated what to do for the next 3 hours. He decided he wanted to ride the bus to the zoo, so off we went. We missed the first bus so we waited for the next one and on we went and let me tell you, it was so easy with his wheelchair!! We wandered around the zoo for awhile and headed back. We met with the dietician and Cam had gained almost 3 pounds!!! It was incredible to hear that he weighed in at almost 43 pounds, the most he has ever weighed!!!!!!!! She was very happy with his progress, but wanted us to push harder to get his boost to the 480ml per day goal, right now we were only up to 300ml per day so we have a long ways to go. She was also not very happy that Cam had started skipping breakfast because he is full form his morning boost. Recently Cam has been having problems with his nighttime boost giving him reflux and he has not been able to finish the full 150ml so she offered us a new plan. We would start hooking Cam up to boost at bedtime and he could stay hooked up to the pump all night while he sleeps. he could take the full boost amount over 9 hours and then not have to take it during the day at all. Cam agreed to try it and SUCCESS!!! The first night Cam took all 300ml while he slept, woke up saying he didn't even feel it and was hungry for breakfast. We will slowly start increasing the volume over the next few weeks in hopes to reach our 480ml per day goal.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXHM-fhlfjlTJ1IxmbH5e3Z-J6fr-pH0w5ouDtv0beysNLYeW7fZTwrPmSl_kmpQ4tPgXigPjkoLttoBr-RQ6TnIWSKPQ9LZV2PyEo-MFyTJm1P7lAgSjRIA9kxOOD_k0OHARxkk64M-X6/s1600/IMG_1039.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXHM-fhlfjlTJ1IxmbH5e3Z-J6fr-pH0w5ouDtv0beysNLYeW7fZTwrPmSl_kmpQ4tPgXigPjkoLttoBr-RQ6TnIWSKPQ9LZV2PyEo-MFyTJm1P7lAgSjRIA9kxOOD_k0OHARxkk64M-X6/s320/IMG_1039.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6_GL45NwXE9EITk88k-12i4V-hQkWyXEIXgKs1hxPGLR3WtniKA2jc3rIe6b20MVuq1MPsUaHutt26taBJRB2MaYP7CQmh1wu8VVu1U97QPp5U1PeWrS6C1XJlJ1Y01_fqPEE6o4e9wqC/s1600/IMG_1040.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6_GL45NwXE9EITk88k-12i4V-hQkWyXEIXgKs1hxPGLR3WtniKA2jc3rIe6b20MVuq1MPsUaHutt26taBJRB2MaYP7CQmh1wu8VVu1U97QPp5U1PeWrS6C1XJlJ1Y01_fqPEE6o4e9wqC/s320/IMG_1040.jpg" width="240" /></a></div>
<br />
<br />
Now we are going to kick back, relax and enjoy every moment of summer we can. Cam has a few appointments this summer with some new doctors so we will deal with anything they say as it comes, but for now we are smooth sailing and I will take it while I can get it!!!<br />
<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-57918544681563458322013-03-27T23:01:00.001-05:002013-03-27T23:01:34.855-05:00Finding Balance<div style="text-align: center;">
<span style="color: #990000;">As we continue on our journey of life with Cam, we once again discover that finding balance is key. What I don't understand is why doesn't it ever get any easier to find that balance? Why as humans do we find ourselves consumed by our worst traits when times get hard? Why do we feel the need to hit near bottom before we realize the need for help and balance? I guess we call that "human nature", but boy does it make for some bumps in the road!!!!</span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">Every time we have faced a decline in Cam's health or a major change in his medical needs, everything seems to fall out of balance. I tend to deal with these situations by bringing out my controlling side, I have to know everything about everything, I have to make all the appointments, I have to know everything good, bad and ugly about what is happening, I research things to no end, I talk about it to everybody and their brother. Meanwhile, Kevin deals with it in denial until it's right in our face, he internalizes everything and releases some of it in time when he can handle it, he tries to interrupt my control, to no avail, and then lets me go on my manic control spree which ends in all sorts of crazy feelings. Although a lot of those feelings are not justified, they hang in the bounds until we reach the bottom and are strong enough to look inside and decide to make a change. This my friends is exactly the pattern of the last few weeks since we have returned home from the hospital. We came home with new responsibilities, which in turn changes the dynamic of all the relationships in the house. This morning I woke up and decided that today was the day to climb out the hole and get our balance back, take responsibility for my actions and find happiness, so off to yoga I went. I left feeling like a new person, ready to take responsibility for my portion of the unjust feelings as well as talk through the ones I didn't feel responsible for. What I did realize though, for probably the thousandth time in my life, I cannot expect anyone to take care of me better than I take care of myself, and that is where I went wrong. I was expecting people around me to do things that I had never even asked them to do, like they were mind readers, and then allowed myself to be disappointed when they didn't do it!! Seriously! One of the most important things this roller coaster has taught me over the years that I can only be the best mom, wife, boss, and friend if I put myself and my happiness first. I have discovered that while life may give you more than you think you can handle, peoples actions and words can affect you in the moment, and sometimes you feel like everything is against you, only you are in control of the outcomes and your happiness. How you respond to the obstacles, challenges, actions, and words, combined with your ability to talk things out and most importantly the ability to take responsibility for your own actions and feelings is what truly finding balance is all about. </span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">Tonight as I sit on the couch and look over at the two greatest gifts in my life I feel balanced. It feels like a weight has been lifted off my shoulders and am looking to tomorrow, not looking back at yesterday. </span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #990000;">I cannot imagine what this roller coaster ride must feel like for a 10 year old, but it however it feels it doesn't seem to stop Cam from finding his happiness. His birthday party was amazing!!! He had friends and family over, the Game Truck came to the house and everyone had a great time. As the parents came in to drop off and pick up their kids, Kevin and I had an opportunity to speak with some of them and were amazed at the amount of compliments they gave Cam. They all raved about him being the happiest kid in the hallways, always offering a smile and a good morning or good afternoon, telling us how their kids come home talking about how great Cam is.......it truly was a humbling experience. After the kids came in from the truck and had cake they were headed downstairs. I asked Cam if he needed help and he replied "no, I got it Mom" as he slid off his chair and began to butt scooch, I witnessed an act of kindness that could only come from a child. His friend sat down next to him and scooched all the way across the floor and down the stairs with him. I wanted so badly to take a picture to capture the moment, but all I could do was stare in amazement and hold back the tears. Cam is surrounded by a support group larger than I ever imagined and we owe a big "THANK YOU!" to everyone who reads his blog, helps him at school, offers thoughts and prayers, raises children that are so kind, helpful, and warm hearted. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;">This week Cam was asked to be the manager of the boys' volleyball team at his school, and much to my surprise he said YES!! I am so happy that he will be part of a team and that his friends found a way to include him in something that he otherwise would not have had he opportunity to experience.</span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #990000;"> We are blessed to live such a life and feel such love and support!</span></div>
<div style="text-align: center;">
<span style="color: #990000;"> </span></div>
<div style="text-align: center;">
<span style="color: #990000;"><br /></span></div>
<div style="text-align: center;">
<br /></div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-19598263486433789302013-03-12T21:22:00.001-05:002013-03-12T21:43:26.852-05:00Pulmonologist........check!<br />
<div class="separator" style="clear: both; text-align: center;">
<br /><object width="320" height="266" class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="http://i.ytimg.com/vi/YVi0WtfRA_M/0.jpg"><param name="movie" value="http://www.youtube.com/v/YVi0WtfRA_M?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" /><param name="bgcolor" value="#FFFFFF" /><param name="allowFullScreen" value="true" /><embed width="320" height="266" src="http://www.youtube.com/v/YVi0WtfRA_M?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" type="application/x-shockwave-flash" allowfullscreen="true"></embed></object></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #cc0000;">Well after another loooonnngg day at Lurie Childrens we have another clean bill of health. Cam and I spent the majority of our day downtown doing a pulmonary function test and meeting his new doctor. Along the way we found ways to entertain ourselves with the nose plugs they use :) The test was long, but painless and the doctor was incredibly nice and informative. Cameron's test results showed some very strong numbers as far as lung capacity and ability to pull air in. He is able to use 87% of his lung capacity and breath in at 88% which is great! The only number that was low was his ability to push the air back out, which came in at 47%. She said this is completely normal in MD patients around his age because that uses the smaller voluntary muscles which are usually some of the first affected by the disease. She has a very proactive approach, which I loved, and suggested that sometime before next winter we come in and learn how to use a cough assist device (http://www.healthcare.philips.com/main/homehealth/respiratory_care/coughassist/default.wpd) and get one for the house. She said she could set us up with one now, but it was not urgent as we are coming out of cold and flu season. They recommend for us to have one on hand as Cam gets older because as the disease attacks his muscles, coughing will get more difficult and a basic cold could very easily take a turn for the worse if he cannot produce a productive cough. I appreciated her proactive look at things and as soon as we are fully adjusted to the tube we will be adding one of these devices to our current collection of medical supplies. She talked of a lot of things that could potentially become issues in the future, but once again cannot give us any firm prognosis as Cam still does not have an exact diagnosis. She spoke very highly of the new neurologist and clinic that we will be attending in the coming months, which was reassuring. Changing doctors and clinics is always scary and filled with challenges so it is always nice to hear positive things before you go. She told me that the neurologist was at the forefront of genetic testing and had many connections in the MD world, which is exactly what we are looking for. Genetic testing has come so far since we last tried to find a diagnosis that we are hopeful we can find the answers we are looking for!</span></div>
<br />
<span style="color: #cc0000;">For now we are breathing another sigh of relief and looking forward to Cam's birthday and summer being right around the corner............</span><br />
<br />
<div style="text-align: center;">
<span style="color: #cc0000;">Which brings me to tell you about a conversation I had with him the other night, while doing Legos, that weighs heavy on my heart. Last summer we invested in a dune buggy, an ATV and a trailer so we could go off-roading as a family. Cam loves being outside and riding the four wheeler, but cannot ride as a passenger at many of the off road parks so we bought a 2 seat dune buggy!! Even though it seemed to break down every time we took it out, Cam loved it. We would come back after a run full of mud laughing so hard we couldn't talk. Kevin and I got to talking about plans for this summer and started thinking about how Cam's body has changed and started to question whether or not his body could take to rough ride anymore, or if he would even want to go anymore. Ever since he his g-tube placement his mindset of what he can and cannot do anymore has changed drastically. He no longer wants to be in band, which he was so good at, because it's too hard to breath with that much force now. He will no longer pull himself up into chairs or out of chairs in fear of hurting his button . While I understand why he is afraid and no longer wants to do these things it breaks my heart to see. I casually brought up the dune buggy conversation while we were working ever so diligently on his lego project and at first he said he was looking forward to it. So I said great and we continued on. A few short minutes later, after I watched his wheels turning ferociously, he looked up and said "actually I don't think I can do it anymore". I inquired as to why the change of heart and he briefly explained that where the seat belts are they will hurt his button and he just doesn't think he can handle it. At that very moment my heart broke once again, I wanted to crawl under the table and cry like a baby. But I didn't.........I gathered my thoughts and tried to continue the conversation, which became a one way conversation very quickly! I could see the hurt in his eyes every time I looked at him and he immediately shut down. This is pretty typical when we talk about things of this magnitude. He told me he didn't want to talk about it anymore, but would not tell me why. I knew why, I just wanted him to open up and let it out but I guess he is not ready. I am hoping one day he will talk with us, or someone else, about his feelings and dealing with his body changing but until then, all we can do is offer our love and support and let him know we are here when he's ready. Later that night he told me that he liked our idea of selling the dune buggy and getting a little travel trailer to go camping :) so if you are looking for us this summer, we will be camping!</span></div>
<br />
<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com1tag:blogger.com,1999:blog-8984823624431420398.post-5708386086447554912013-03-03T20:47:00.000-06:002013-03-03T20:47:32.630-06:00FriendshipSo what is the true meaning of "friendship"? <br />
<br />
Cam can tell you................<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJKOSKKt-iEXkawrWKmasTznj8r82Bw4e03_hxJ2hawhlg560uKzk18n2C5nq2ACN4rgTWER96oh2srSR-ZwsR7RDdwxMHvWQPjZdPP5naFS9yvdIs9qQ5ZMmNWE_LEl1r4LBDV7qSTqOY/s1600/IMG_0764.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJKOSKKt-iEXkawrWKmasTznj8r82Bw4e03_hxJ2hawhlg560uKzk18n2C5nq2ACN4rgTWER96oh2srSR-ZwsR7RDdwxMHvWQPjZdPP5naFS9yvdIs9qQ5ZMmNWE_LEl1r4LBDV7qSTqOY/s320/IMG_0764.JPG" width="320" /></a></div>
It's the one person who wants to be like you because it makes you feel good! Even if it means doing something you don't do everyday.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbuB2P5vQaGWClpEpF2ah3ew_br5WHcYMU1m5z0bp7ftg8xdgUXF_m4hunBnrmL4H8JSbNgoEsikVMxbH6IXBRrlXI6Lz4TlfOiKTYOAo7xziBg4x4OSBrEAvy_-rZ3Lhw6uNUkj1ADx-K/s1600/IMG_0080.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbuB2P5vQaGWClpEpF2ah3ew_br5WHcYMU1m5z0bp7ftg8xdgUXF_m4hunBnrmL4H8JSbNgoEsikVMxbH6IXBRrlXI6Lz4TlfOiKTYOAo7xziBg4x4OSBrEAvy_-rZ3Lhw6uNUkj1ADx-K/s320/IMG_0080.JPG" width="320" /></a></div>
It is someone who does arts and crafts instead of the swing set because you can do it together!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEith5Mb00A04V__iKMcAXSzXRR6lR59POMdsqOY3hF0Iv4ibBIhlSBbv2q8o_sbXN6SphRIS4dToUjkwd7P52Hg36TGLslbJfXu8PAsvzwklE33bRoQTzVuSrgWo1IprAD6r1YYupvdkh_G/s1600/IMG_0187.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEith5Mb00A04V__iKMcAXSzXRR6lR59POMdsqOY3hF0Iv4ibBIhlSBbv2q8o_sbXN6SphRIS4dToUjkwd7P52Hg36TGLslbJfXu8PAsvzwklE33bRoQTzVuSrgWo1IprAD6r1YYupvdkh_G/s320/IMG_0187.JPG" width="320" /></a></div>
It's someone who shares their birthday party with you because you are only a week apart!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn9Wj9agsnLNDXxMQNIppr-5atVyanvtm-CHBFuYj0SfnPw8o3X-5_aYUNDdx2lT5qDk4W1u8QTwynZxlTY3ukUVDZvE0Ktx12O2L7Zfj84JF2Sj71V-4l_pd0kFg75upA2KLGs0HPBN1c/s1600/IMG_0974.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn9Wj9agsnLNDXxMQNIppr-5atVyanvtm-CHBFuYj0SfnPw8o3X-5_aYUNDdx2lT5qDk4W1u8QTwynZxlTY3ukUVDZvE0Ktx12O2L7Zfj84JF2Sj71V-4l_pd0kFg75upA2KLGs0HPBN1c/s320/IMG_0974.jpg" width="240" /></a></div>
<br />
It's someone who goes to the beach and builds sandcastles and holds you up because it's hard to stand in the sand!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvLVybNGPoayAbAGhGqkfgIDVwKCHoT_xWDwoj7fg6c446w8YS0zb2bfAFH0VupQyEiHhw066FsqF4ZHCXmX5GiuhE89xGqaQxTtEjv_022okfoAMsAwgE9WMC-Yu31A4tdblJ8SNXd9fv/s1600/IMG_0009.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvLVybNGPoayAbAGhGqkfgIDVwKCHoT_xWDwoj7fg6c446w8YS0zb2bfAFH0VupQyEiHhw066FsqF4ZHCXmX5GiuhE89xGqaQxTtEjv_022okfoAMsAwgE9WMC-Yu31A4tdblJ8SNXd9fv/s320/IMG_0009.JPG" width="320" /></a></div>
It's someone who lets your cousin hang with you and be silly, even if she's a girl!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoxkXqo9K4fb1HOvAkcu6eQUeDsO4cxj7otBjzen5CoYVAII1E1_ZfgVzmW7Bfn-HHJCzgbP9pps8VfwgKXOf1UVTUxFweqblfFsIu-cKMM6t94eVT-IRGJa_QKXuh2YTPSu_egl_nNgr0/s1600/IMG_0757.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoxkXqo9K4fb1HOvAkcu6eQUeDsO4cxj7otBjzen5CoYVAII1E1_ZfgVzmW7Bfn-HHJCzgbP9pps8VfwgKXOf1UVTUxFweqblfFsIu-cKMM6t94eVT-IRGJa_QKXuh2YTPSu_egl_nNgr0/s320/IMG_0757.jpg" width="240" /></a></div>
It's someone who helps you up when you are down!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3Hq_t2S-WE4S0l77sHPs56eRerRphXT33PNL_Csq_gL4kfbS2RNB1BWt1j_ClENDhrIdaKJYbIO61g_0ro7mAmrK2txYC2jGnomqqOaI06I3B0U4IfF5huj6oAI3XQ4LRaItaVO_BQ59i/s1600/IMG_0780.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3Hq_t2S-WE4S0l77sHPs56eRerRphXT33PNL_Csq_gL4kfbS2RNB1BWt1j_ClENDhrIdaKJYbIO61g_0ro7mAmrK2txYC2jGnomqqOaI06I3B0U4IfF5huj6oAI3XQ4LRaItaVO_BQ59i/s320/IMG_0780.jpg" width="240" /></a></div>
It's someone who will sit next to you when that's the only thing you feel like doing.<br /><br />
<br />
Cam is so lucky to have a friend that has been there through everything and no matter what, still stands by his side. They have a special bond that I hope everyone has the opportunity to experience in their life. <br />
<br />
Cam had a great appointment this week with the cardiologist. We were there for what seemed like forever, they did an EKG, an echocardiogram and then the Dr. came in. She said Cam's heart was in great shape, was the right size and she didn't need to see us for 2 years!!!! The best appointment we've had for a long time. We are hoping the rest of our appointments continue to go this good so we can continue enjoying the peak of life :)<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-17665470274559515702013-02-24T14:06:00.000-06:002013-02-24T14:09:46.466-06:00Cam shows MD who's boss!<div style="text-align: center;">
<span style="color: #cc0000;">After a challenging start trying to get back to school and work</span><span style="color: #cc0000;"><span style="color: #cc0000;">, and a short night on sleep,</span> Thursday morning came around rather quickly . Cam did his boost then got ready to head to school to give it another shot. Kevin took him in and off to the bathroom they went. The plan was to have the school nurse go in and help him until he regained the strength to do it alone, but Cam, once again, showed his strength and determination and said he didn't need any help. Cam pulled his chair in the way that his Dad had practiced with him and up and over to the toilet he went and back to his chair! Cam went to school both Wednesday and Thursday full days and did everything on his own. I can't put into words the feeling I had when I walked in Wednesday afternoon to see him smiling after a full day of school and telling me he did it on his own. I think we all slept a little better that night :)</span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #cc0000;">The weeks ahead bring appointments with the cardiologist, pulmonologist, follow up with the surgeon and a new MDA clinic at Lurie Childrens where we will see a neurologist, orthopedic and slew of therapists. We will keep you updated with how they go, for now we hope and pray that they are just routine visits. Most of the doctors are new to us as we change his medical care over to the team at the new hospital. The appointments will be long and grueling, telling the story of Cam's medical history for the last 9 years over and over again, but it is worth the agonizing to have Cam under the care of some of the best doctors in the world! We are hoping with a new team in place we can push forward with some further genetic testing to come closer an exact diagnosis in order to aid in Cameron's treatment. With all of the advances that go on in the medical field on a daily basis we feel as though we owe it to Cam to provide him with the best medical care we can find. </span></div>
<div style="text-align: center;">
<span style="color: #cc0000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #cc0000;">I feel as though we have hiked our way out of another valley, cleared the treeline and are climbing for the next peak, Cameron's 10th birthday!!! I can't believe almost 10 years have gone by, seems like just yesterday I was watching him take his first steps. I know we have a long, bumpy road ahead of us with many obstacles, but in this moment I find peace that we made it through. We will enjoy the peace and serenity while it lasts and know that on the other side of every valley is this moment where we can all smile, take a deep breath and make every moment of our lives count. </span></div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinM9VltGcsZzQVYJB1StKHoVoID_E5i8Pn4eABHYvW2rcf8WD9HcPvAng6P-Zyg9z6t6QyNiObV5clGX07e5Uzb0mvBtZHMGERRCosU5Unoj_Af4R5fwBUTKytLNvGbB_pV8dn3HBcBiWt/s1600/18f93071-c242-46f4-adb6-4a6524edadb2wallpaper.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinM9VltGcsZzQVYJB1StKHoVoID_E5i8Pn4eABHYvW2rcf8WD9HcPvAng6P-Zyg9z6t6QyNiObV5clGX07e5Uzb0mvBtZHMGERRCosU5Unoj_Af4R5fwBUTKytLNvGbB_pV8dn3HBcBiWt/s400/18f93071-c242-46f4-adb6-4a6524edadb2wallpaper.jpg" width="400" /></a></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-54669476041575992662013-02-19T21:35:00.002-06:002013-02-19T21:35:51.986-06:00Back to reality<div class="separator" style="clear: both; text-align: center;">
<span style="color: #cc0000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHI-CttNPcBWMnWUVs2Ub5RfNXShI1yIaNOJMSGRdMN4y4PnwBKBXYNs7qPFSVrBj6oaQac6n145FK6BEyoTe4UBzB032zcUGuCsK6smqrCJ-3anpl5Os5DHvye6DQ8ptu1VRUWTNdclmL/s1600/IMG_0775.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHI-CttNPcBWMnWUVs2Ub5RfNXShI1yIaNOJMSGRdMN4y4PnwBKBXYNs7qPFSVrBj6oaQac6n145FK6BEyoTe4UBzB032zcUGuCsK6smqrCJ-3anpl5Os5DHvye6DQ8ptu1VRUWTNdclmL/s320/IMG_0775.jpg" width="240" /></a></span></div>
<div style="text-align: center;">
<span style="color: #cc0000;">Every day I wake up and look at this face, a face of bravery, happiness, determination, intelligence, creativity and love. Most days I look up to him and wonder how he does it. How does he wake up smiling everyday knowing the challenges he will face? How does he wake up everyday determined to prove people wrong? How does he wake up everyday ready to work 10 times harder than the rest of us to do everyday things? How does he come up with the most creative ways to make things that are difficult for him easier? How is he so BRAVE? </span></div>
<div style="text-align: center;">
<span style="color: #cc0000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #cc0000;">This morning I woke up extra early so I could hook Cam up to boost before school. I carry him to our bed, hook him up and he promptly falls back to sleep. I continue getting ready all the while worrying about how the day will go. I pack our lunches, make coffee and go back up to disconnect him and get dressed for school. He comes downstairs with a smile on his face ready for his first day back. I am smiling too, but totally freaking out inside! I say goodbye and begin my commute to work. The plan is for Kev to go in and make sure he can use the restroom, which is the most challenging part of his day because he has to transfer from his chair all by himself. As I drive I am trying to talk myself down from the cliff and just keep reminding myself how excited Cam was to be going back to school and that is a blessing. At 8:58 I get the call.............things did not go as planned. Immediately my heart hurts for Cam, he must be so upset. My mind is racing! What do we do now????? What if he can't ever do it again? How will we make this work? Will he have to change schools? How will he handle this? Then I get it together, I pull up this picture on my phone and think of all the things I listed in the beginning of this post. Knowing that Cam will push through with all of our support and love I sucked it up, went to work and got caught up. Meanwhile Kev and Cam headed home and began to relax themselves. They started working on some ideas for making transitioning easier and came up with a great way to make things work. We've practiced a few times tonight and Cam is ready to go back tomorrow and try again and I have no doubt that he will do it!</span></div>
<div style="text-align: center;">
<span style="color: #cc0000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #cc0000;">I spend a lot of time in the car on my commute to and from Indiana for work and use this time to gather my thoughts, cope with situations and reflect on the days past and put my energies in the days to come. I have learned so much from Cam in the last 9, almost 10, years that I cannot begin to put it all in here, or into words for that matter. I hope for those of you who don't have the pleasure of knowing Cam as well as others that I can continue to share pieces of him so you too can get to know his strength and use it to push yourself through anything you encounter. He has faced more challenges in 9 years than most people do in a lifetime, yet he still wakes up with a smile on his face ready for whatever the day brings! </span></div>
<div style="text-align: center;">
<span style="color: #cc0000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #cc0000;">Smile :) </span></div>
<div style="text-align: center;">
<b><span style="color: #cc0000;"><br /></span></b></div>
<div style="text-align: center;">
<b><span style="color: #cc0000;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">Challenges
often make us realize that we have more courage than we think and that one person
CAN make a difference in the world ... even if it's the world of one other person.<br />
<span style="font-size: x-small;"><i>—</i> <i>Chelle Thompson, Editor of Inspiration Line</i></span></span></span></b></div>
<div style="text-align: center;">
<span style="color: #cc0000;"><br /></span></div>
Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0tag:blogger.com,1999:blog-8984823624431420398.post-46503966162684080822013-02-18T10:50:00.000-06:002013-02-18T10:50:10.837-06:001 week post-op<div style="text-align: center;">
<span style="color: #cc0000;">So here we are, 1 week post-op already!!! I can't believe that a week has gone by and Cam is headed back to school tomorrow and I am headed back to work. All in all things have gone pretty easy since we came home, aside from the occasional moment when I want to throw that feeding pump across the room :) Cam has been feeling better and better everyday and is working hard on stretching and moving around in hopes to be back to normal sooner than later. His body is tolerating the feeds and he seems to be eating pretty good too. We have a lot of homework to catch up on and lots of thank you notes to write today before things swing into full gear tomorrow. </span></div>
<div style="text-align: center;">
<span style="color: #cc0000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #cc0000;">School days will be interesting as Cam's feeds (we call them boosts) of 120ml take about an hour to complete right now. We are hoping to build up speed as we go, but for now that is as fast as his little body can handle without refluxing. This means waking up extra early every morning so he can get an hour boost in as well as eat breakfast before school. We tried to do one constant boost last night of 240ml in 1.5 hours because he did not eat much lunch or dinner but at 220ml he was refluxing. </span></div>
<div style="text-align: center;">
<span style="color: #cc0000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #cc0000;">The site of his tube seems to be healing nicely and he doesn't have much pain when we manipulate it to clean it or hook it up. Carrying him is still a bit interesting as it pulls on the site if we pick him up by the underarms like we normally do so we have to carry him in a laying position. With his long legs we often run into doors and walls and get a good laugh out of it!!</span></div>
<div style="text-align: center;">
<span style="color: #cc0000;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="color: #cc0000;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimOYgOazwM2dCZnLGyyyI6S7UX9gWnco92R-7F1Q9_UYGpEhlSaCeKUhNG3BG7hbKfhLMiAnwHfaDrhGuRFZ3_TX0Tp3LOdVH0u24bf2L_zIHn32TeyizgXOySA9GYcKLr8Xj92E-m8iot/s1600/IMG_0773.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimOYgOazwM2dCZnLGyyyI6S7UX9gWnco92R-7F1Q9_UYGpEhlSaCeKUhNG3BG7hbKfhLMiAnwHfaDrhGuRFZ3_TX0Tp3LOdVH0u24bf2L_zIHn32TeyizgXOySA9GYcKLr8Xj92E-m8iot/s320/IMG_0773.jpg" width="240" /></a></span></div>
<div style="text-align: center;">
<span style="color: #cc0000;">Today Cam is diligently working on his homework to try and get caught up after missing 8 days of school. Afterwards we might go try and find some fun and get him out of the house a bit.......maybe a little Dave and Busters in our future :)</span></div>
<br />
<div style="text-align: center;">
<span style="color: #cc0000;">Love, </span></div>
<div style="text-align: center;">
<span style="color: #cc0000;">The Schwartzbergs</span></div>
<br />Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com3tag:blogger.com,1999:blog-8984823624431420398.post-57449060081979719092013-02-14T10:47:00.002-06:002013-02-14T10:47:22.381-06:00Feels good to be home!<div style="text-align: center;">
<span style="color: #cc0000;">It feels so good to be home and get a good nights sleep!!!</span></div>
<div style="text-align: center;">
<span style="color: #cc0000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #cc0000;">We were discharged yesterday afternoon about 3pm and headed home. On our way out a volunteer from the family life center told us to stop by the Valentine's Party downstairs before we left because they had really great gifts for the kids. We ventured down to the 12th floor family life center at Lurie Childrens Hospital and met some amazing people from an organization called Holiday Heroes. (http://www.holidayheroesfoundation.org/) They gave Cam a box of valentines, a valentines card and a Best Buy gift card!!! It was a great going home gift. </span></div>
<div style="text-align: center;">
<span style="color: #cc0000;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #cc0000;">We made it home and got settled in and Cam was feeling good. His pain is under control and his appetite is increasing. His best friend came over and played Xbox with him for a couple hours, which is the best kind of therapy for Cam! Today we are going to start trying to get him moving around a bit again and work on some stretches so his muscles don't atrophy too much. He has lost quite a bit of strength over the last few months so we are hoping with proper nutrition and some therapy we can get some of it back. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #cc0000;">This morning he woke up after a great nights sleep and had a little breakfast and now we are getting ready to do our morning supplement. Kev and I are learning as we go, but are doing pretty good with all of the new equipment we came home with! I am very thankful for the internet to answer my questions as they come up :) Today Cam will be home taking it easy and is hoping his best friend will be over again to play video games and take his mind off things. I will be out shopping for a cabinet to house all of the supplies that Walgreens seems to keep delivering EVERYDAY!</span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: #cc0000;">Lot of love,</span></div>
<div style="text-align: center;">
<span style="color: #cc0000;">Kev, Elisha and Cam </span></div>
<br />
<br />Anonymoushttp://www.blogger.com/profile/17346808223588036940noreply@blogger.com0