Tuesday, March 12, 2013


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!

For now we are breathing another sigh of relief and looking forward to Cam's birthday and summer being right around the corner............

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!

1 comment:

  1. I found your blog from my brother John's "Make a Muscle" Fundraising post. Thank you for sharing your journey with Cam, I have read every post. Cameron is amazingly brave and is blessed to have such an amazing Mom & Dad! You're all in my prayers, and I'll be watching for new posts! God bless!
    - Janet Barker-Evans