This has been such an eventful week I couldn't let another moment pass without posting. I have to first update you about my li'l man, Aiden. He is now 2 years 4 months old. I never thought he'd make it past the first month of life, much less to be a thriving and happy two year-old. He has a few developmental problems that have gotten more pronounced over the last few weeks. There is a right food "drag" going on with li'l man. Last night, I got an email from his OT with Project Tyke. Here is what she said.
"Got to see Mr. Cutie this afternoon and boy, was he "on"! He performed all my motor skill challenges which emphasized him manipulating lids in twisting, pulling, pushing and visually/bilaterally problem solving the containers. (I had just begun saving containers from the kitchen and he really liked finding the hidden toys within.) Worked super hard and just kept trying....Continue to tuck things into pockets and wallets, and have him help to remove them...
I also challenged him to maintain good balance when reaching for items positioned above his head, right and left sides, just a bit out of reach. He became a little annoyed by this but mixed up with running and "stop/go" games, he just pushed through it.... He requires work in maintaining his stance, while engaged in language or learning or using his hands. It's harder for him to sustain so activities such as yoga, karate I suspect would be harder than activities like soccer or baseball, physically I mean.
He worried me a little bit too. He was demonstrating a big toe drag on right foot. I'll watch this closely and after talking with one of our physical therapists today, he may end up requiring an orthotic. Notice at home if occurs at certain periods of day (on weekend). This toe drag may just be some weakness coming through, and so have him play games like toes up and lead into doorways, stairs with right foot to see if we can strengthen. Pretend to make circles/letters with foot ABC's.....Sometimes kids will temporarily look weak "distally" when they are in a growth spurt period.
Anyways, keep up the great work at home and he seems so very happy at his school. He names his friends, is talkative and interactive, such a big boy!!
Any luck locating information about service dogs? D."
So, I responded with…
"I noticed the right toe drag, too, but I thought it was just the CP? I'm not opposed to the orthotic just know that whatever needs to be done, we will heed your recommendations."
And, this morning early, she sent me…
"yes of course, with Cerebral Palsy there are the tone abnormalities but not always evident what is tone or weakness....certainly not pulling into position of toe pointing (hypertoncity) but kind of falling in to so the question is low tone (hypo) or weakness. So best practice with this would be to see if can influence his function by strengthening prior to accommodating it with orthosis. He could also benefit from some kinesotaping for support so that he doesn't appear clumsy if toe dragging persists. So, I'm "on it" and I'll watch very closely and keep you informed."
And I just said, "Thank you SO much"
Here I am thinking it's all related to his CP, but it's a real abnormality nonetheless and needs to be monitored. So… here we go again. Pushing ahead with the little guy, though I think he is making progress every day. I don't need him to be some sort of tri-athlete or anything; I just want him to have every possible advantage. And in his case early intervention is key.
So now here is the update on Sophie. She has officially lost five pounds. No small feat when you're growing up as well as trying NOT to grow out. Sophie is eating right and exercising and I am so proud of her. Attending a diet/nutrition program at her age isn't what I wanted for her, but it is helping, so I'm all for it.
As for the other exciting thing going on in our house, we have a houseguest from another country this week. We have opened our home to a patient who is battling RDD (A version of the Histiocytosis Sophie has). They were desperate to come see Dr. M to get help and to possibly receive a treatment plan because no one in their country would or could help them. Unfortunately, contrary to what a lot of people believe, there is a huge problem with socialized medicine. You have to wait for 6-8 weeks to get an MRI or CT and Dr. M was able to schedule her test immediately. The patient will have a thorough treatment plan soon and I am so blessed that they were able to come here to get the help they need from Dr. M. They also said that in their country if you have a blood disorder you can't EVER be on the transplant list. Can you imagine needing a liver for your dying child and not be able to get one for them??
I just hope the best for this patient and all patients coping with Histiocytosis. Actually we are going to go to Galveston soon to assist with a fund raising effort that will directly affect the cancer center where Sophie goes for her treatment. I hope we can raise some money to assist with the research efforts for Dr. M and his team. Every dollar raised goes directly to research so I'm so pleased that we might be able to help, even if it's just small potatoes. Every little bit counts.
I am also blessed that my fiance is supportive in this effort. I am so honored that I get to be with a man who is not only willing to help others right along side of me, but doesn't stand on a soap box, pretending that he is all holier than thou. He just acts... simply. He doesn't put the kind and generous things he does all over the internet and make a big announcement about all the nice things he does. He just does them. That to me, is the personification of Christ in the world. That is why I love this man so much! He is humbly serving others and he doesn't even really realize he's doing it because it's just a sincere act. Just who he is. That is why I call him The Awesome Mr. P!
Well have a great day friends!
J
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