First of all, I want to say "thanks" to my readers (all 5 of you) for your concern, thoughts and prayers on behalf of Crew. Who would've known it would be such a rough year yet we are constantly blessed having Crew in our lives.
I'm going to try and address some of the current happenings with Crew.
Powerchair: The powerchair that was donated to us back in December... then totalled by the airline is now being fixed. The airline paid out for damages but we found out our cost to adapt the chair for Crew was going to be $1600.00. This is the cost of a joystick and a seat cushion. The child who had the chair before us didn't use a joystick. He drove it with a headpiece and the seat is too large for Crew. Consequently, we decided it might be in our best interest to purchase the demo chair instead. The demo chair fits Crew perfectly and since that particular chair is being discontinued we could get it for a good price. Now, we are going through the grueling process of getting insurance to purchase the chair.
Preschool: The move to the deaf school has been good for Crew. His sign language has picked up and he is making progress. The hours are long and that has been a legitimate concern. He is gone all day and when he comes home he is exhausted. It's all I can do to keep him happy until bedtime. On the other hand, the school change has been tough because we don't have as much time with him to work on PT.
Mobility: His hamstrings are very very tight and I'm having quite a time finding time to stretch him. We realized the other day that he isn't crawling anymore. He can still do it if you coax him but instead of roaming the house like he use to, he just sits there and cries until you pick him up. I really don't know if his wheelchair injury is keeping him from moving around or if its just the tight hamstrings. At our last botox appt., we had injections in his gastrocs but not his hamstrings. I think that might have been a mistake.
Social: The last few days have been a pick-me-up as I've seen his mood improve immensely. Crew has been so snuggly and showers us with hugs and kisses constantly. I'm so thankful for this! Outside of family, Crew's social life consists of adults... his PT, his teacher, my friends. It pains me knowing the other neighborhood children are participating in playdates and he is obviously excluded. Crew doesn't even respond when they say "hello" so naturally his circle of friends is basically non-existent. The twins (2-years old) are so sweet to him... I just wish we could develop some basic social skills.
Health: We haven't seen any seizures for two weeks now. Crew is rebuilding his strength since his injury and I hope to see more walking in the future. I am diligently trying to get the constipation under control. It's been really bad and we are using Miralax, Ducolax, Senekot, and enema's. I feel so bad. His eating habits are horrible. He lives off of oatmeal, potatoes, yogurt, pancakes, and eggs. He won't drink juice and fruits/veggies are out of the question with the exception of some occasional applesauce. Most of his food aversions have to do with sensory issues. He is so grossed out by the texture of foods. I'm very worried about his eating. It's frustrating and stressful. It takes an enormous amount of time to feed him and cannot be accomplished without games and distractions. Getting his food and meds down him before the bus comes has been quite the task!
Keep us in your prayers. Love you all!
The past month has been crazy around here. The day after Crew's birthday we headed down to Primary's for phenol injections. We've done the botox several times but it just hasn't been making a huge difference so we decided to try phenol. With the phenol you have to be sedated. It was a very minor procedure. They checked us in and we waited in this boring room for about an hour... no magazines, no windows, no toys. I was really feeling sorry for those who have to spend very much time in the hospital.
us home. The nurse got a kick out of Crew's passion for cheetos. He wouldn't take his eyes off the cheetos and the bag was gone within a few minutes. This was great for us because we were discharged quickly.
Little man likes to dress himself;) His shoe fettish usually involves dress shoes and quite often chooses non matching shoes. I got a kick out of the "two left feet" on this particular day. What I will do to keep him happy! *sigh*
