clinic

Today was SMA clinic day.  It seems to creep up on me and I don't realize that it's been 6 months and he needs to have a checkup.  It was kind of a whirlwind of information and my mind was scattered and so I didn't pay much attention to the emg testing that Riley was getting but his readings are again stable which is of course excellent news.  Dr. Swoboda came down to chat with me about some decisions we are facing with Riley.  It was nice to sit and talk with her because we don't see her in clinic any more.  She has such a love and passion for these kids and basks in their success no matter how tiny it may be.  Riley truly is in a class of his own.  Yes, he's considered a type 1 but he also fits some of the categories of type 2.  His emg readings are what they see in type 2 kids at his same age and they have consistently remained stable for quite some time.  Another area he excels at is being able to sit for long periods of time (supported of course). Because sits up a lot he's now facing effects of scoliosis.  If the scoliosis gets bad enough it can hinder lung function and also cause problems with over all mobility.  They are wanting him to have surgery to place expanding rods in his back to help prevent the side effects of the scoliosis.  This really is a big surgery and it's not just a one time deal every six months they go in and expand the rods.  As I was talking with Dr. Swoboda I expressed to her my concerns about his recovery and his ability to bounce back after such a huge procedure.  She was very understanding and gave some profound insight.  She said that in the long run it will be very beneficial for him.  It's hard to decided these things for him and hope that they are the best decisions and what they would want for themselves.  Now when he's 15 he may feel differently...my exact words where uhh 15? Honestly? You really think that he's going to be 15? She was so matter of fact and said Yes, I don't have any reason to doubt that he will live into adulthood.  He's very stable and clinically presents like a type 2 and those kids live well into adulthood.  I can't seem to wrap my head around this.  His whole life I feel like we are counting down days until he was 1, then 2 then 3 now 5 wondering how long his body can endure. Now to hear the word 'adulthood' is just so beyond my mind to comprehend.  This is the reason they are pushing for the spinal intervention to give him the best chance of reaching that age with the least amount of complications along the way.  I hate having to make these kind of decisions.  I envy those of you who's big decision of the day was what to pack your kid for lunch. I'm not sure I'm ready for this.