October 25, 2014 by kruckr
Why is it that parents are so adamant about counting months 1-12? I understand some continue to count higher (oh my baby? She’s 19 months, etc.) But you don’t see any parents posting pictures of their baby with a sticker that says “16 months” on it. I’m sharing this only because I now realize how much pressure I felt as a result of these stickers. You will notice on my blog, there is at least one post per month (for months 1-12). But after?
I remember having to choose the right outfit that went along with whatever color the sticker of the month was, finding a new pose each month and trying to get it posted as close to the 1st of the month as possible (Henry was born on the 1st of July). Yes, they were cute and yes it’s fun to see how fast they grow. But it’s all kind of silly isn’t it? Of course, if I had it all to do again of course I would.
Without the sticker pressure, I no longer force myself to pound out a monthly blog post. However, I understand that I should probably post a little more often. So without further ado …
Since Henry has turned one, there are several updates. First, Henry is not rocking a Star Band helmet to fix plagiocephaly (fancy word for flat spot/misshapen skull). There were lots of options for how to decorate the helmet. Many parents pay lots of money to get it painted. This was going to be my first choice, but after reading several parent reviews about having to constantly modge podge to prevent scrapes and scratches, it didn’t seem like a sound assessment. The next option was a vinyl wrap. These seemed really durable and a really great option, but we couldn’t get the guy to call us back so that was also a bust. Finally, there were sticker decals. Really affordable and low-maintenance. So, I went to http://www.blingyourband.com. The coolest decal I found was a replica for the “Iceman” helmet from Top Gun.
The helmet adjustment period was pretty fast. I think he’s still a little more used to it than I am. I miss kissing his head and stroking his hair when I hold him, so I probably give him more helmet breaks than I’m supposed to. For the most part he wears it about 22 hours a day. I give him a break in the morning when he wakes up and he has to take it off for his bath at night and keep it off until after his hair dries. We go in about every two weeks for adjustments and it looks like he’ll be wearing it through the winter.
Aside from the new accessory, there are a few other updates. He still has a seizure or two every 1-2 weeks. This week, he’s had a few more, but he’s getting bigger so we may need an adjustment with his meds. We’ve also added a medicine for hypothyroidism. This is pretty common with 1p36 kids and can add to the lethargy and poor development. He’s been on the medicine for over a month now and we’ve seen some mild to moderate developmental progress. He’ll have more blood work and possible an increase with this med at his 18-month check-up.
Henry will also have some new gear coming his way. Thanks to the JT Townsend Foundation, Henry will be getting a Jenx Bee Chair. This chair was recommended by one of his physical therapists. It has better head support and a harness that will help him sit up. It also comes with a tray that he can use for activities and eating once he develops a little more.
In addition, we’ve ordered a new adaptive stroller called the Zippie Voyager. It’s basically a jogging stroller and supportive seating system all in one. Like the Jenx chair, it has better head support and a better harness system than his current stroller. And finally, we’ve asked another one of the amazing non-profits in Jacksonville for a better conferable car seat. The Radian RXT car seat is the best conferable I’ve seen. It folds up for travel and should support him for many years to come.
These things would not be possible without support from Community Peds Care. I know I’ve sung their praises before, but I am continually amazed and grateful that they exist. I wish every special needs parent could have the kind of support we get from them. Last weekend, we were invited to their annual fundraiser, Halloween Doors and More. It’s basically a haunted house for kids, except replace the word haunted with magical. Various donors and organizations sponsor rooms and decorate them according to a theme. There was a Harry Potter room, a Emerald City face-painting salon, Candyland, Jaxon De’Ville’s playhouse, and of course a Frozen Land. It was awesome and fun … even for adults. Since Henry had to wear his helmet, I planned his Halloween costume around it.