Not too much new going on around here. Mommy and daddy have both been sick with sore throats and head colds but thank goodness that A has not got it! *knock on wood*
I am pretty nervous when it comes to getting sick now that he had his last ICU stay on the vent. I pretty much wipe down everything in our house with lysol wipes like three times a day as well as spraying Lysol.
Still having big time issues with the seating clinic and not being to find seating that works for him. It is SOOOO frustrating!!!! We are now trialing our second wheelchair which is called Kid Rock. It is pretty neat as it is the only chair that allows movement. Basically when A arches the chair moves with him up to a maximum of a 35 degree angle. To get out of it he has to use his stomach muscles to bring it back to sitting. Which I might add he can do!
Other than the same old things are good. We carved a pumpkin last night and daddy is looking forward to coming home from work today and getting dressed up with his little man. Those pics will follow!
I should also add that Stacy, a wonderful blogger who gets a lot of traffic on her site from all kinds of people (including doctors!) has posted a quest for help with Ashton and his spells. She was wanting to post it in the past however with my address and phone number it wasn’t really an option. Now that things are different she agreed. I am hoping that someone KNOWS what he is doing. You never know where answers may come from!
Well first I want to start this post off by saying that A has been wonderful since Saturday evening!!!!! He went for a nap on Saturday and when he woke up it was like he was back to himself!!! I didn’t even realize until about 10pm that he was not whining, not crying, not fussing! I can’t really say WHY things happened like this but I am sure not complaining.
I think it may have to do with me lowering his calories and doing the 10-8am feed and slow feeds in the day. He was always on 30cal/oz and I put him up to 37cal/oz when we came home. However I did talk to a few other moms that said their kids took a while to get up that high so I went down to 33cal/oz. The only thing that stinks is that he is on feeds throughout the entire night but I guess we have to do what works for him best!
Since Saturday night he has also not required oxygen at all and sits above 93. Of course he still has his ton of desats but at least he isn’t requiring the oxygen to stay above 90. I can’t explain this either but it is great. I had put him to bed Saturday night with the nasal prongs on, hooked him up to the monitor (no oxygen on yet) and he was at 97. I decided to leave him off the oxygen for a bit and for almost an hour he didn’t drop below 88 so I left him off it. And it has been that way since.
I do think there are going to be times that he requires oxygen but I am just so happy that it isn’t something that he needs every single night.
Physio and OT came on Monday and he did great. I really wasn’t thinking that it would work out anymore because of how he has been but it was nice to see him doing things that I haven’t seen him do in a while. He has been put on the waiting list for the seating clinic so that we can work with them to get him into a wheelchair probably within the next year.
It is so nice to see my little man back to the way I remember him. It has been a while. He isn’t without the gagging, odd vomit or blue spell but he is HAPPY and that is what matters to me the most!!!
Now for some long overdue pics of my little man!!