Noah got RSV and pneumonia in January and I was hoping that by now he would be back to baseline but unfortunately he's not. SMA tends to progress a little more than normal during periods of illness. Most of the time he bounces back to where he was before he got sick but his hospitalization took a lot from him. I have kept hoping and praying his strength would come back but even his PT and OT noticed that he is weaker and has not regained what he had. He is still able to sit unsupported but very short periods of time. He falls over more often and he is not able to get himself back to a sitting position and is not able to hold his head up as well as he could before. I try to be strong but sometimes I just can't. The last few months have been pretty hard watching the progression and being totally helpless. It hurts, and cuts me down to the core....
In March, Noah finally got his very own power wheelchair. He loves it and I am so proud of him. He does amazing in it and I love that he has his independence.
The second week of June we drove to California for the annual Families of SMA conference at Disneyland. We left Wednesday night and got to Disneyland at 3am. It was rough on Noah. We were going to stop halfway and stay the night but the thought of unpacking all of his things...bipap, pulse ox, feeding pump, cough assist, just to pack them up in a few hours did not sound like fun, so we decided to just keep going. The first day consisted of sleep and registering for the conference. Noah's allergies had been giving him problems for the past few weeks and by the 2nd day of our trip we found out it wasn't just allergies. He began to run a fever and had junky lungs. I attended some of the workshops alone while Lane stayed in the room with the boys so that we didn't expose other kids to Noah's germs. He was sick basically the whole trip.
We went to Disneyland on Sunday and Monday and tried our best to enjoy it. The first day was hard because we didn't understand exactly the ropes of the wheelchair access stuff, but once we figured it out it was better. It was better, other than the fact that people are ignorant. Noah did great in his wheelchair for it being so very crowded and instead of people moving for him they stared at him. Some people laughed and said they wished their kids "had a cool cart" like his. Others asked if it was remote controlled and then we got the "what's wrong with him" remarks, To which I always reply...Nothing is WRONG with him..... Ignorance is bliss......truly. Instead of thinking we were a family on vacation just like everyone else, we were a spectacle. I even had a few people ask if they could take pictures because they had never seen anything like that before......ummm NO!
Last night I was sitting holding Noah in the playroom and Eli was pushing his walk behind walker all over the place..Noah was watching him, giggling and all the sudden he looked up at me and said "momma, I walkie on toes like Eli." I was completely heartbroken. I held it together, I stood up...wrapped my arm under his arms and around his chests and placed my other arm under his but and proceeded to help him walk. I moved his legs for him in a walking motion and he laughed and said "momma, I walkie". While I kept my composure while I was helping him, after I put him in bed I fell apart. It's so difficult. I believe harder on me than him. I just need to remember to show him and praise him on what he can do...I never want to be one to point out to him what he cannot do...I will always try to focus on what he can do...or figure out an alternative way to do things.....In my eyes he can do ANYTHING!!
