This week a friend from our parish who is a master carpenter came and built a ramp in our garage for John Paul’s access. Eventually we will move the washer/dryer out of the mudroom and widen the doorway into the house so he will be able to drive it into the house.
He does very well steering it around outside, and loves the ability to move freely where he wants to go; so much of the time he is still dependent on me or Patrick or someone big enough to carry him (George does pretty well, actually) where he wants to go. But the chair gives him a new freedom. He is still really hesitant to drive it inside (I drove it around the back and into the basement for the winter so he could try it out..and he wouldn’t touch it). I think because it’s unfamiliar territory and he’s afraid to crash it. But he might just need to get used to the idea and grow a little bit.
In order to access the basement and the upstairs in his chair, we will eventually (years down the road) need to install a lift, which will be kind of a huge expense and will probably involve pretty intrusive renovations. But that is down the road. For now, he is still light enough to be carried, and prefers to move around inside the house without using his powerchair. It’s possible that this will always be the case. Perhaps with surgery and therapy, he may even be able to stand on his own someday. But we will try to at least give him the option to use it if he wants to.
Other news on the JP front:
- we met with the school system to qualify him for the special needs preschool program in the fall. It’s hard for me to believe he is old enough to go to school! I really liked the therapists we met with, and I think that school will be very beneficial for him. My dream is that one day he will be able to go to school with his brothers, if our school could ever accommodate his needs and if his speech improved enough that he didn’t need speech therapy. But that’s for some future date and for God to decide! For now it is helpful and a relief to have access to the resources of the public schools.
- He continues to see a speech therapist weekly, and has made huge progress (in lots of little baby steps). He can say “I want ___” if prompted, he uses pictures as prompts to communicate with us. He makes several new consonant sounds, “d” “B” “sh”, etc., mostly babbling and not connected to any particular words. But you can tell he’s experimenting. I would guess, speech-wise, he is doing now what a 12-18month old does. But cognitively, he is right on track with a 3-year old (read: lots of will power and lots of tantrums). As you can imagine that causes a lot of frustrating situations, but the picture prompts and the few words he says certainly help. (He knows a few signs, too. signing “water” is adorable)
- His platelets are so steady, that we only see the hematologist twice a year now! we check them every 3 months. Sometimes he has little bruises show up, but other than that, we hardly even think about it anymore. Much, much different than that first year.
Generally speaking, he’s keeping me busy, but he’s doing really great and we’re enjoying the spring weather and trying to stay out of trouble!