Happy Advent! I thought I’d take some time to write a little summary of how John Paul is doing lately, since it’s been a while. Recently, we had a couple of appointments at UVA that went well.
First of all, we had a follow-up with Orthopedics, and the x-ray confirmed that his right leg bone is completely healed. It now looks like a solid bone from hip to ankle, with the floating fibula kind of ending somewhere above where a knee would be. I’m not sure what you would technically call this bone, since it’s both a femur and tibia. My sister Joannie recently dubbed it a femibia, so I think that’s what we’ll call it!
John Paul has completely recovered and adapted to his new leg now. He hops around like nobody’s business and you’d never even know he had had it any other way. He still has the scar, of course, and probably always will.
In other news, probably more of note, we saw a developmental pediatrician recently which gave us some professional confirmation of what we had been suspecting for a while now. He performed a few intelligence tests to see how John Paul’s neurological development is going and assessed his speech.
He held up a paper with about 8-10 pictures on it: a dog, a flag, an apple, a star, etc. John Paul got almost all of them right. After about 8 correct answers, he missed identifying the word “leaf” – and I’m sure it’s because he just doesn’t know what a leaf is yet- So he pointed to a picture of a purse (which he wouldn’t know either – in fact, I think my 5 and 7 year old boys would have trouble identifying a purse). Anyway, the doctor was very pleased with him.
The second test was a puzzle with circle, square, and triangle pieces. He took the pieces out, held the circle up, and asked JP to point to where it should go. JP went one step further and took the piece from the doctor’s hand and placed it right in the circle hole. He also did the same for the square and triangle.
The real kicker was the next test – the doctor took the pieces out, flipped the puzzle around to see if he could put the pieces in in reverse. And John Paul didn’t even skip a beat. This test in particular demonstrated that he can perform tasks appropriate for the brain development of a 30-month old.
It was great news!
The not so good news is that his speech development is nowhere near where it should be. He recommended intensifying speech therapy to 2x/week instead of 1x/month, which is what he had been getting. I had actually already been consulting with his therapist to increase the frequency of her visits anyway, so his assessment confirmed what we had already been suspecting.
He was positive that the speech delay was directly related to the coding episode John Paul had when he was in the hospital for his throat surgery when he was eight months old and the brain injury he suffered. Speech delay is not at all associated with TAR syndrome, and his physical makeup in no way should impact his formation of speech. So whatever it is that is keeping JP from properly forming consonants is neurological.
His PT and speech therapist have suspected this for some time, but have been reluctant to make a positive diagnosis because of his age (up until now he was too little for us to be sure that he understood us) and his personality (he can be a stubborn little bugger and simply not do things we asked him to do because he didn’t want to). Not to mention that my kids have all been kind of late-talkers. Sam didn’t start talking until he was 3 (and now he never shuts up!haha)
But now that the DP has given his opinion, they theorize that JP might have something like Apraxia, which has to do with how the brain works to move the muscles of the mouth to form words. It’s caused by injuries to the brain like the one JP suffered.
The doc and John Paul’s therapists are confident that with intense therapy he will be able to learn how to speak. In fact, now that they can pinpoint the problem and why he has a speech delay, they can treat him more effectively because there are specific strategies you follow to treat this type of disorder.
We will see Dr. Norwood again in the spring so he can see if there is any progress. Needless to say, JP’s ability to speak will be VERY IMPORTANT for him in the future. There is a wealth of adaptive technology that he can use to his advantage – voice-activated gadgets, dictation programs, etc. And his frustration levels will be high enough without having to add to them the frustration of not being able to express himself through speech.
So, if you have a prayer to spare you might offer it up for this intention! John Paul is such a joy, despite all of these obstacles he has had to overcome. He makes up games with the other boys. He loves to watch little shows and thanks to LeapFrog, has started to learn letters of the alphabet. He loves music and often dances and hums along with it. Like a typical 2 year old, he throws a lot of tantrums and has become an incredible picky eater and throws food all over the floor.
But for the most part, he is a happy kid and loves life. And life sure is a happier place with him in it!