We recently received our gait trainer for little G that we had ordered about a month ago. The gait trainer allows G to progress towards walking while giving him the support he needs to be upright. We haven’t been able to use it much at home but sent it to school so his PT could work with him.
The following video was sent by his PT, Stephanie, and is a short excerpt from his sojourns throughout his school as he cruises for ladies. Check out the sweet “Lookin’ at you Jill!” and “Nice dress Anne, it’s totally your color!” sign language he gives the ladies as they walk by. Little stud.
Many of you helped us purchase an Upsee for G for his birthday back in August. When we got it, we agree to work with his old physical therapist at the University of St. Augustine as part of a study to see how it effects kids with low muscle tone like G. The Upsee product is so new that there is very little research available that shows that it actually helps kids. One of his doctors actually called it a “fad product” since it’s gotten so much attention since it’s release. We actually heard about it on Reddit.
The goal of the study is to get G in the Upsee daily for at least 15-30 minutes and see how that improves his general mobility and muscle tone. The team had G do a few physical things before we started using the Upsee and will have him do those things after the study to see how he’s improved. The hope is that if we can start providing evidence of how this helps kids, we might see insurances more likely to pay for the product for other families.
We’re about four weeks in right now and so far I’d say that the difference is quite noticeable. When we first got G into the Upsee, he’d just hang there and not do a whole lot. Every now and then, he’s lock his legs for a few seconds in an effort to push himself up, but that was about it.
As the days have gone by, I can feel him be much more active in the harness. Being that the poor guy is attached to me through the whole time, I can feel him as he activates his legs and core. We started off putting him in there and letting him watch TV. As time has gone by, I’ve noticed that he’s much more interested in being active…he wants to move and look at things and he’s vocalized that.
In fact, as we move, I can feel him use his arms and core much more actively. He wants to grab things off of the table. He wants to watch the washing machine run, he just wants to experience everything now that he’s finally off of his belly.
So I’d say so far that the Upsee has really made a difference for him. It’s helping him get stronger and giving him a chance to see things from a standing perspective that he hasn’t gotten in his stander. The other night, the two of us were kicking a ball back and forth with Mama C and he had a great time. What a cool blessing to kick a ball with my little boy for the first time! So for us it’s been a real blessing.
The study hasn’t concluded yet and there is word that we might extend it since he’s doing well. Once we get some more results, we’ll try to post what we can here.
We have had a dead battery in our Roomba for the last few months and haven’t been able to use it. We’ve had it for a few years and the kids always tollerated it but never really showed an interest in it other than complaining that it was too loud pilules de viagra. Recently, I got a new battery for it because I just stinkin’ love the thing and put it back to work.
It turns out, G is borderline obsessed with it. This is great as it’s like instant therapy. The little guy works so hard on his army crawling to get to it. While he does get upset when it rolls away (see the video below), it is pushing him to work hard. It’s funny, you get all these toys and things to try to motivate kids, and it turns out that what motivates them the most is a silly little robot vacuum.
G’s figured out recently that he loves being on his belly. It’s been a real riot for us to see him figure this out and show how much he loves it. You can see a video of it below.
This is a big step for him in terms of getting ready to crawl. When he’s on his belly, he’s still moving around primarily by rolling, but you can see him pulling his legs in like he’s about to crawl. And he loves this new trick he’s figured out that it makes it impossible to feed him when he’s not in his chair. This weekend, while we were camping, we had the hardest time getting him to stay up in a sitting position while feeding him. He’d grab some food and down he’d go. We’re thrilled, obviously, to see his progress.
The next step is getting back into a sitting position which we’ve only seen him do twice. But from there it’s on to crawling and then walking!
And here’s another video of him we took recently. He had a lot to say on easter to all of his fans.
Little G picked up his sweet new ‘SMOs’ today from Hanger Orthotics here in Austin. You can read more about what these things do here (http://www.surestep.net/smo.php). But the basic idea is that he has a tendency to be really pigeon toe’d due to his hypotonia. They lock his foot into an alignment that helps him get into the right stance for walking and standing. He will have these things for about the next nine months. They are really light weight and are meant to be worn whenever he is standing or doing his therapy.
In case you can’t tell. dad got him dressed today as was responsible for his hair. My goal was to get it as tall as possible and I think I accomplished that goal. Sorry little buddy, I know you are going to see this picture in a few years and hate it, but that’s what dads do!
Today, Mama C, and I had an unfortunate experience regarding strangers and G that I wanted to share. We were having lunch as a family with our friend Cherisse and a few other friends for her birthday. In the beginning of the meal, I put G in his high chair and started feeding him some baby food and let him gnaw on a piece of pineapple to help him work with his textures. At some point during my time feeding him, our friend Kelly who was facing me says to me “I’m sorry, but the people behind you are laughing at G and taking pictures and it’s really making me angry”. There were three younger adults at the table behind us who, unbeknownst to me, were having some laughs at G’s expense.
My dad instinct kicked in and I immediately turned around and asked them if they’d been taking pictures of G. One of the girls at the table started mumbling something and I asked for clarification. Eventually, after a few more things I couldn’t understand, she said that G was getting the pineapple in his eye and they were “concerned”. I had been keeping a pretty good eye on G and had never seen this happen, so I didn’t know what to say. I asked about whether they had been taking pictures of him, and they denied it again and told me: “You seem really self-absorbed, so you should probably get back to your conversation at the table.” I’m not a tough, nor cool guy, so I didn’t know what to say so I simply said “OK” and turned around. Several friends at the table confirmed that they had seen the people at the table snickering and taking pictures of G with their phone.
It absolutely broke me and mama C’s heart. There are so many reasons that we were upset. First, it’s so hurtful to think that someone would look at our little man and think that something he was doing was funny enough to want to share and laugh with their own friends about in a private manner. Second, it was a present reminder of what our kids will go through as they age…people will laugh at G, make fun of G. And he’s already got so many challenges to overcome. Third, it’s a lot of work to take G to a restaurant…he’s not easy to situate in a chair and he doesn’t love sitting on his own, so we usually end up holding him. Naturally, we love holding him, but now on top of that effort, we have to realize that some people will possibly disparage or laugh at him. Really?
The main thing that was hard to swallow was that these were people were obviously old enough to know better. They must have been in their 20s to 30s. Old enough to know better. I would expect to deal with this type of thing from 5-10 year olds…but hipsters in their 20s? Why is a little boy who has trouble holding his head up funny? Why is there a reason to take a picture of him? So he can’t look us in the eyes? Why is that funny? Why is that worth a picture?
Tough. Tough. Tough to deal with as a parent and a believer in Jesus. Tough to think of what G and his sister will deal with as they grow. How do I balance being a loving, protective father of my sweet little boy with being someone who does not retaliate?
“When they hurled their insults at him, he did not retaliate; when he suffered, he made no threats. Instead, he entrusted himself to him who judges justly.” – 1 Peter 2:23.
In happier news….here’s our little rock-star today partying in his “My Little Seat” chair. We know many of the grandparents love videos, so we try to keep you entertained.
Today was G’s 8 month vision exam with our Pediatric Optometrist. If you remember in our last visit, G was diagnosed with Delayed Vision Maturation which just means that he was delayed in his vision development but would eventually have normal vision. At the time, the Optometrist told us that she did not think that G had Cortical Vision Impairment (CVI) which is more serious and has to do with how the brain processes the images that G sees.
Well, today we got the diagnosis that he probably has CVI. I was pretty disappointed about it and Mamma C was pretty down as well. CVI means that G will have a variety of outcomes for his vision, but he will most likely never have completely “normal” vision. It also means that he will have many challenges when it comes to reading, dealing with crowds, etc…
Obviously, it wasn’t the best news, but it’s not the end of the world either. We have been encouraged to see G make progress in tracking objects and focusing on us more recently and that doesn’t seem to be plateauing or slowing down. He’s still just as smiley as ever. We’re just a bit concerned as to how he’ll be impacted by his vision impairment going forward.
The next steps for him involve getting him hooked up with vision therapy through Early Childhood Intervention (ECI).
We had our 6th Month check up with our Neurologist at Dell Children’s this morning. Overall, it was a pretty uneventful appointment. There is little new information about our guy that we could discuss with Dr. Kane. It was fairly apparent pretty quickly that we really needed to have a recent MRI done before being able to discuss anything in detail with him. A few things that came up in the meeting and were answers to questions that we had:
G’s global development delay is not a result of his Agenesis of the Corpus Callosum. I had read online that most ACC kids grow up very much similarly to typical kids their age and only begin to show symptoms of the condition once they mature. So the fact that G is at the level of a 3 month-old right now is more related to his chromosomal abnormality than his ACC. Doctor Kane told us that often ACC is a symptom of the fact that something isn’t right with the development of the child in the womb and that seems to be the case with G. His ACC is a result most likely of his chromosome abnormality.
What the neuros are watching for and wanting to see on the MRI is whether there are gray matter cells in the white matter. I have a hard time explaining what this is, but the general idea is that the brain should continue to mature as G ages up to 2 years old. And if there is evidence of gray matter in his white matter, that means that his brain is maturing poorly.
We’re not in a huge hurry to do the MRI soon and there is no medical necessity for it. There’s really no treatment for his condition…no cure, so there is no hurry to “figure it out” so we can treat it. The main thing that the neuros are watching for are seizures.
Overall, the plan is to continue with the physical and occupational therapies as we are now and continue to pray that he keeps developing and improving. He gets more smiley and rolly (if that is a word) each day, and we love it.