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What what? Mama C updating the blog the same day as a doctor’s appointment?! What is this world coming to?!?!

Today G saw yet another ophthalmologist, making this #4, and our very last shot in Austin. Thankfully, I would say it was a success, and finally a doctor I felt listened and provided thoughtful input. To put this away forever and ever, Cortical Vision Impairment (CVI), which I cried for months about, is totally off the table! We have felt this was possibly a misdiagnosis from the beginning, but even more so as time has gone by. Dr. B confirmed he didn’t see this at all, so we are done discussing it.

G does have an eye that continues to cross, and he noticed that his right eye is significantly stronger than the left, so we will be patching his right eye for one hour every day.  He hated it when I did it, but I conveniently ensured he would be distracted by Elmo, so he got over it pretty quick. (excuse the half naked kid, he had made a big mess of his shirt, but I promise he is usually clothed)

2015-05-04 16.43.02We will go back in 3 months and see if the patching helps strengthen the left eye.  Dr. B also confirmed G is far sighted, which is odd since we were previously told he was near sighted. Apparently if docs do the exam before the eyes are fully dilated, you get near sighted, even though that isn’t accurate. As Dr B said, one step at a time, so we will stick with the pirate look, and move on to four eyes at a later time!

And for your viewing pleasure, G crawling a few days ago (he has gotten even better since this!) – you can see Daddy P invested in serious crawling gear and G getting up on all fours is very exciting for us!

ps we are aware you can’t see videos when this post goes out in email. Click on the actual post to see it online and the video is embedded there.

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Catching up!

So far behind I know!

Since we last posted, G had a power chair for about 3 weeks. I wouldn’t say it was a huge success, but it was worth a try 🙂 Here is a video from his first time in it…I wouldn’t say things changed much during the trial. Often he would accidentally hit the controller, and couldn’t decide whether to cry and be scared, or to laugh and think it was hilarious. There were two times that he actually “drove” for about 15 seconds, and in doing so maneuvered a turn in a sidewalk, and even went off roading in the yard and thought that was hilarious (as did the rest of us!)

Based on all of his therapies and stander that we incorporate throughout the day, we have decided to hold off on the power chair for a little while. It’s just one more thing to find time for….I had pretty frank conversations with his physical therapists about the need for it, commenting how awesome he is doing with walking in his gait trainer. They were honest back that yes, G will walk (yay!), but he won’t walk far (boo!). It will take so much for him to walk, we don’t want him to tire himself out and not have any energy left for learning in school. Daddy P and I are adjusting to this reality and that yes, we will need a wheelchair for the long haul. Daddy P is pretty excited about the minivan though, he’s been wanting one for years now! We will wait until January of next year though so we can use up our benefits quickly, and probably leave it at school so they can work with him in it there.

It has become very apparent G understands so much of what we say. He communicates back in grunts, of which we know exactly what he is trying to say – he has one sound that sounds like an “urgent giggle” (meaning “yes!”) and the other sound is a bit of a typical whine/whimper (“NO!”). He has been vocalizing more with different sounds. When he says “more” (with his hands), he vocalizes “mmmm”. The best has been when I give him something he asked for and I say “what do you say G?” and he responds directly with “uh uh.” Okay, okay, that makes no sense in type, however the intonation is very much a “thank you.” We will need to get it on video.

Physically, he has been pulling up to all fours sporadically, which is huge progress! We are super excited! He doesn’t usually get his head up, but it is apparent his core is getting stronger. He is moving his knees is a more “typical” crawl also – His one legged army crawl is still the fastest way to get around, so when he is in a hurry, that’s his preferred transportation! He is still walking up a storm in his gait trainer; we have tried a walker (which is similar but less support), but he is not nearly as interested.

Cognitively, I have noticed him playing more appropriately with blocks, balls, books, and cars – all things they look for in his development reviews. While he doesn’t play with peers directly, he is more interested in playing near friends at school, which is great.

And more than anything, G has the best smiles EVER! Here is a picture of him and his Nana during Spring Break! He is one happy dude!
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