I took the lil man to see the opthamologist again today, and I must say, I was quite encouraged. For one, she explained that any kid who has a vision issue, and no issues with the structure of the eye, are always classified as “CVI” (Coronary Vision Impairment) (see prior post). This explains why there is such a wide range of outcomes for CVI kids, because they in actuality have a range of unexplained issues. Also, if you have CVI, you are automatically designated as legally blind, they go hand in hand. So, I was glad to know it wasn’t a separate issue to be concerned about. The doctor noted G was doing much better than last time – she said he was tracking better and his pupils were functioning better – all good news that his CVI is improving. We will go back in 6 months and see how things have progressed. She noted he is near sighted in one eye and far sighted in the other, and for now, they balance each other out so she doesn’t want to give him glasses quite yet.
The vision therapist came yesterday also and said he was doing really great. She gave us some great ideas to help him focus on certain objects. She noted again that he is doing a really great job.
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.
Lil G had an evaluation today for vision therapy. As usual, they came supplied with yet another diagnosis for G we hadn’t heard yet – legally blind. Hmmm, well…as I was complaining about his ophthalmologist and the varying information everyone she communicates with anyone she talks to, the vision therapist (VT) actually noted she thinks the doctor is doing G a favor. By indicating CVI, and that he is legally blind, he can qualify for therapy. He is right on the cusp of qualifying so she thinks the doc is trying to push him over the edge so he can every opportunity possible for assistance. I can support that. 🙂
G performed much better than the VT was expecting – while he didn’t connect with her (and 2 other folks with her), she saw him connect with me and the banana I was eating (of course, that little piggy!), indicating his brain connected me with good things to come. Whereas with strangers, his brain wouldn’t connect them to anything and therefore he doesn’t really care to notice them.
He was very interested in a bright orange fuzzy ball and she was impressed the way he tracked it and followed it around. We have a similar toy that is much smaller which he was interested in, but not nearly as much, indicating the size makes a difference – the bigger it is, the more likely he can process what he is seeing.
We talked about his love for light, and how he will focus on things when the blinds are open now – when he was a baby, he would do NOTHING but look at the window. She noted this indicates progress with his CVI and his brain learning to filter things out and focus. It requires more work for him to filter out the “clutter” in his vision field and really see what we want him to.
She is encouraged with his ability to use both sides of his body (many ACC kids have difficulty), and that he doesn’t seem to have issues with his peripheral vision. She noted the way we usually sit against the couch (solid without a pattern) which is against a cream wall – not much to clutter his vision and we are helping him learn what to focus on . Lastly we talked about books and focusing on those that aren’t too busy with solid colors and with 3D affects.
Having said all that, we decided to proceed with VT – they will come 2x a month for a few months, and then probably go down to once a month. We want to set him up for the best outcomes, and this will help give us ideas of how to help him process what he sees, without being overwhelmed.
I wish I had a picture to post. He is so smiley these days, its adorable. I will get one soon! Monday he will have physical therapy, speech therapy, and vision therapy, and an ophthalmologist appt on Tuesday. Busy boy!
We met with Lil G’s Physical therapist and a medical device company today to talk about standers. Why, you might ask? Well, this little picture talks about the proven medical benefits of getting the little guy off the floor acheter de la viagra.
For G specifically, there is a bit of a concern that without putting weight on his hips, he could experience difficulty later because those joints and muscles haven’t been used. The plan is for him to be in the stander for about an hour a day. We chose the EasyStand Bantam which has the flexibility of sitting, so he will have a variety of new viewpoints.
It will be several months before it gets here, but we are excited to have the process underway. Next will be ordering him Supra-malleolar Orthosis (SMOs) – they will be used when he is in the stander to give him stability. The hope is that they will be sufficient without having to move to Ankle Foot Orthotics (AFOs) – they come up higher on his leg, which means they do more of the work than his leg muscles. The more we can make the little guy work, the better!
Oh, and finally, we have an evaluation scheduled with a vision therapist next Friday! We are anxious to see what she has to say, and will be a great segue for another opthamologist appointment the following Monday.
This was a fun video we got today of Lil G and his new “musical instruments”. Someone commented to me recently about his “inchstones” as opposed to “milestones”, and this is one of them. His OT has been working for months on his next goal to bang two toys together. While he is only really moving one arm, he is really engaged and concentrating on the task and making noise which is tremendous progress!
Just in the past week, his sitting has improved greatly as well! He has more muscle control these days so he looks less floppy and can keep his head up for a little while to check things out. Still a long way to go, but we will take every inch we can!