Luke recently turned 3 years old, and I thought a birthday would be a good time for an update.
He has seen the GI Doc for his one month follow up visit, and he's gained some weight, so that's great news. We're really happy to avoid the feeding tube.
We had his IEP meeting, but they changed what they were offering at his Transition Meeting in March (a place in the mod/severe SN preschool class) to something totally different (inclusion in a typical classroom at a Head Start), so we're going to have to have another IEP meeting.
His visit with the PM&R folks, resulted in not only referrals for ophthalmology and the neuromuscular doc at Shriners, but also additional referrals for speech, OT and PT, so if we're unable to get the school district to provide any of those, we have the option of taking Luke up to Sacramento for services.
This is Luke's "Zone" so to speak. The baby gym behind him, the beads on the left, and the activity table on the right make up his favorite toys.
The beads belong to Early Intervention, so those will be going after his "graduation ceremony" next month. He likes the noise they make when he swings them back and forth. He will scoot on his back to get closer to this toy.
If we remove 2 of the table legs, he can play with this while seated on the floor. The buttons make music, which he likes. Notice that he still touches things with the back of his hand. The baby gym, I bought because he likes music, but the piano part has broken already. :/ Still, he like batting toys hanging from the arch.
This is a new addition. It's funny, Hannah getting a wheelchair didn't bother me a bit. I saw it as a helpful tool for all day outings or after surgery. The delivery of Luke's wheelchair, however, really bugged me, and I'm not sure why.
His PT refers to it as a Travel Chair. He doesn't use it in the house, I just put him in it for a picture. It's equipped to be anchored to the school bus so he can ride to & from school in it. This sucker is heavy. I can barely get it in and out of my van.
Coming up next, Luke goes in to see the dentist for his regular check up. Luke grinds his teeth horribly, which we've asked about, but there's nothing that can be done at this point. At least they're only baby teeth? He also has a very strange double tooth that seemed a little loose to me recently, so I think we're going to attempt to get an x-ray to see if it has typical roots or not. I'm wondering if he'll need to have it pulled to avoid him choking on it.
The next big, photo worthy event for Luke is his "graduation" from Early Intervention, not that he's mastered any of the goals they had for him, just that he's aged out. I feel pretty much the same way Mr Incredible does about these things, but we'll be having 3 of his 4 therapists here for the occasion.
Assuming we get things straightened out with the school district, Luke will be starting school next month. I picked up a couple new things for him while I was uniform shopping for Samuel and Brianna. I've also started sewing his winter pants really early this year.
His appointment at Shriners with the neuromuscular doctor is set for September. I suppose I should be glad it's only a 2 month wait. When we adopted Hannah, they booked her first appointment several months out. Her surgery, too, although they had a cancellation and got us in a couple months early.
So that's all the latest with Luke!
I notice that he's not crying in these pictures. Is he crying less now?
ReplyDeleteAs long as he's recently fed, he's most happy in his "zone." I took over a dozen of him in the wheelchair. If you look closely, he still has tear tracks in the one I shared, but at least he's not banging his head or hitting himself in the face.
DeleteWhats your secret? How do you keep going? I don't know how you do it!!! I could never handle what you do, I would have given up by now.
ReplyDeleteI just do the next thing. I can't really just... stop, you know?
DeleteYou don't stop, which is what amazes me! I would be on the ground, waving a white flag! I just can't imagine how hard it is for you, but best wishes for your family!
DeleteHe looks like he is *almost* smiling in the first picture. He looks so grown up- it must be hard seeing his physical appearance and developmental age getting further and further apart.
ReplyDeleteThat is a challenge. We tried a new church recently, and he was fussing in my arms afterwards, and someone asked how old he was. I said, "Three," and they said, "Oh, he wants to get down and run around." It was all I could do to not say, "If I put him down, he'll fall over." I would LOVE to have him *run around* but that's not why he's fussing.
DeleteHappy Birthday to your sweet little man!!
ReplyDeleteMy son is a teeth grinder annnnnd he has a super tooth!! The dentist said we couldn't really do anything about his grinding, and since these are baby teeth it shouldn't be a big deal. He has kind of grown into his (double) super tooth, we haven't had any issues with it at all, he's six now.
All the best!
XOXO
http://www.mrsaokaworkinprogress.com
Interesting! Funny all the little quirks that people have. :)
DeleteAlways interested in updates on Luke. - Does anyone have a theory on why he touches things with the back of his hands? My Lu does that, too.
ReplyDeleteI have the vague impression that somebody referred to it as an autism thing, but I'm not sure who. Sorry to not be more helpful!
DeleteAre you anymore closer to a diagnoses? Is Autism ruled out?
ReplyDeleteWell, we know a lot of things that it's NOT, if that helps any. He is autistic, but it's believed at this point that the autistic behaviors are linked to a genetic syndrome. We're trying to pin down which one to get an idea of his prognosis. If it's what UCSF genetics dept has suggested, he'll need total care his entire life.
DeleteI am so praying for your family. To have to do total care forever seems daunting! Any possibility of adopting him out if it becomes too much or is your plan to keep him no matter what? I can't imagine what his severe special needs are doing to your family! Yes, you adopted, but with so many other kids, how much of " you" the other kids will miss seems really sad. I know in your circumstances I just couldn't do it and while that sounds selfish, and heartless, I just would worry to much about how it would affect the majority. It is just such a spot to be in, each way ridden with struggles. Keeping him means likely a lifetime of struggle, Not means feeling the loss of tye son you truly wanted. Such a sad situation. I sure pray for a happy outcome, as if anyone deserves it, you do.
DeleteThank you. I know prayer is the only thing keeping this boat afloat some days.
DeleteHi, I just found your blog, and wanted say that I've always known that teeth grinding was a sign of parasites in the body. Just my two bits. Maybe you could get some black walnut extract to help with that. If you ask at a health food store, they are very knowledgeable, and can give you the right product to use:)
ReplyDeleteI might have some of that, thanks! I'll check and see. Bruxism is also related to the genetic syndrome the specialist at UCSF suspects, so it may not be something we can fix.
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