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. 🙂