Does it ever get better...

I laugh at the title of this entry because if I don't laugh,  I'll cry......

The last three weeks have been nothing but pure hell......for reasons I am not going to discuss on here other than life.....life is brutal....and then here comes SMA to top it off..... Add cruel and brutal and that equals my life. I have always had these thoughts that life can only get better because I have had so much bad and so much hurt (Although I know it could still be so much worse). But instead I get more trials and hurt. Sometimes I feel like God is playing a mean joke....Although I know there is a reason, I just don't understand it. I am past my breaking point....and I keep spiraling faster than ever into the darkness. Alone, helpless, and feeling hopeless.

So back to the real reason for this blog...Noah.

March has been sort of a rough month. Thankfully we are blessed and have not had any sickness, but he has definitely been fighting something off. We have had more than a handful of nights within the last two weeks of him throwing up, needing his g-tube vented, or several hours of constant desats while he is sleeping. It has been one month since we got his bi-pap and we are still fighting to get him to sleep with it on. He seems to really enjoy it until we make him lay in his bed alone. Last night I sat on his bedroom floor and cried as he cried with it on for about 5 minutes. All to take it off of him.....I am at a loss....but we will keep on trying because that's all we can do. The desats have been my biggest concern because he is dropping to the low 80's. Which all points to him needing to be on bi-pap.

Thursday, he had an appointment at Shriner's with an orthopedic. Just a baseline evaluation because we know at some point he will develop scoliosis. But like everything with SMA it's just a matter of when. Inevitable and all we can do is watch and wait. It's quite cruel when you really think about it. Seeing your child's body basically deteriorate right before your eyes. Nothing you can do but continue treatments, go to doctors appointments, wonder how much time you will get with them and watch them get weaker. A lot of  times when we are out and he is in his wheelchair people comment on what strong arms he will will have. What breaks me every time is know he will get weaker and will lose the ability to use a manual wheelchair. What's even worse is when those around you don't take it seriously. So, back to the appointment they looked at his entire body and also did baseline hip/spine xrays, altogether it was a two hour visit. 

Friday, Lane took him and had new AFO's made. We have noticed that the are starting to get tight around his calves and leaving impressions. Since we are in our 90 days period of getting his first set, then he gets a new set at no charge. Woohoo.....

Thursday we are taking him to get his RGO....they will do a test fit and hopefully it will fit well and we will get to bring it home for him.....

That's all the updates for now. Will update when we have more news.........