As usual, a bit behind in the update, but it is here! G’s Zippie has arrived, and this is a pretty good summary of his thoughts about it:
He loves it! It fits him great, gives him so much support he just can’t get in a regular stroller, and is so much higher up, which really let’s him interact so much more. I took him on a walk this evening and can flip the seat so it’s facing me, and it was so great to talk to him and point out what we saw. It’s a bit more clunky than we were hoping for (Daddy P has decided he needs a new car because it won’t fit in his!), but it IS a smooth ride! I even ran for a bit and while he surely weighs the thing down, it was much easier than my actual jogging stroller!
It has been interesting taking him out in social situations too – I have been approached several times by folks asking me about his diagnosis and often relating with their personal story. It also seems people are more accommodating or understanding than with the stroller, I guess because it is more obvious.
In other news, Unique, a support group out of the UK that does alot of work around chromosome abnormalities, asked us to participate in a survey as they are working to develop an information guide to a new syndrome, known as 3q13.31 microdeletion syndrome. If you google it, I found this study, which someone did provide us when G was diagnosed with his disorder. I guess I never realized there was a name to it, and this microdeletion is only a small portion of his missing genes, but very relevant nonetheless. These are exactly the opportunities we are hoping to support through his lifetime to enable research to continue, as well as provide support to others newly diagnosed.
Lastly, G has another sedated procedure at Dell on Friday for yet ANOTHER ABR (which I am mandating as his last, regardless of the result!!), and his second MRI. His first MRI was at 1 day old when they diagnosed his ACC. At the time, his brain was so small and undeveloped they couldn’t really tell us if there was anything else wrong, so this is the follow up to see if his brain is otherwise structured appropriately. Regardless of the outcome, we wouldn’t do anything different, so we chose to wait for him to be a bit older when they can see more. We know he is progressing developmentally and even over the past few weeks, his social skills have vastly improved – looking at folks when they talk to him, recognizing his name, giggling, trying to reach for his toys, getting mad when we take something away…hopefully this will just be another data point and no big news. Prayers welcomed. 🙂
G is doing great! He has been so much fun lately it’s really sidetracking our updates, obviously!
We received his stander a while ago, and he is doing pretty well in it. It takes some serious practice getting him in that thing, and once he is in there, he tends to do this Elvis thing and put all his weight on one hip (which is quite hilarious actually). But, it’s practice and weight on his legs regardless. We aim for him to be in it 2 hours a day and as long as we keep him occupied, he usually isn’t too fussy.
I apparently filmed him sideways in the stander, so I don’t have video to share…we will try to capture him in in one of these days!
His wheelchair should get here in the next week, so we are excited about that. We were at breakfast with friends yesterday and G was super fussy. We were sitting in a booth and grabbed a booster seat so he was able to sit higher and see everyone- what a difference it made! He was so happy to be a part of the conversation (and see out the window!), so I think the wheelchair will be really great at enabling him to socialize when we are out to eat.
We had friends over for dinner this week and they have two adorable sons – and G LOVED hanging out with the big boys! They had him belly laughing and it was so great to see him so engaged.
And lastly, check out this video! G is signing “milk”! I haven’t been able to get him to do it myself, but if this is a sign of him starting to communicate with us, we are thrilled! Hopefully it will get more consistent…he doesn’t make much of any verbal communication, so we are hopeful that if he won’t speak he will be able to sign.
I KNOW we are so behind on posts…while we get our act together, enjoy this video from last week! Little G is enchanted with our dear friend Miss A – while this video captures the smiles, there were 5 full minutes of all out belly laughs before this that we missed! We love seeing G interact with folks!