We originally wanted to wait until their first birthday for haircuts, but as you can see in the pic below, John-Raven's hair was already creeping out over the top of his helmet, and this pic was taken a month and a half ago.
 |
"I can brush them myself, Mom." Crazy post-bath hair. So by this weekend, their hair was starting to take on a life of its own, and the recent warmer weather was making them sweat a lot under their helmets. So we decided it was time for a trim. |
Thankfully, the boys didn't seem to mind.
Sure, our Converse are 27 sizes too large. But we'll grown into them.
 |
He ain't heavy. He's my brudder.
A Note on the DOC Band (a.k.a. "Helmets")
I mentioned something about "helmets" in this post and realized that I've never really provided much information on what that's about. First off, they aren't true helmets. Helmets suggest something designed for protection, and that's not what these do. They're actually cranial orthotic bands intended to correct the boys' plagiocephaly, which is simply a flattening of part of their heads. Between hydrocephalus, torticollis, and the low muscle tone that has kept them from being mobile yet, they have spent too much time in the same positions, causing their heads to be a bit misshapen. It isn't noticeable in most pictures, but it's definitely there. So, we went to Cranial Technologies to get DOC Bands for the boys to mold their heads into a more symmetrical shape. I'll explain more about the process and our decision to go with Cranial another time -- mostly because we know there are other parents out there looking for information, and we found it extremely helpful to hear about other families' experiences. I will say, in a nutshell, that the process is working and we highly recommend the DOC Band and Cranial Technologies.
Health Update: Inpatient Feeding Program
Starting tomorrow (if all goes as planned), we will be entering the inpatient feeding program at Our Children's House of Baylor in Dallas. The purpose of the program is to help the boys with their feeding skills (oral motor and swallowing). The boys have always been fairly passive about their eating, and for that reason, it's always taken a long time for them to take a bottle. When it was only a few ounces, it wasn't too bad. But now, at 6-8 ounces, it takes an hour or more per bottle per kid. Not only is that longer than they should spend feeding (at a certain point, they start to burn more calories than they're taking in), but it's hard to get them the nutrition they need. It also means less time for other much-needed physical therapies and makes for a long day for everyone involved.
This has been going on for a while. Back in February, we decided to have a swallow study done on the boys, and the results indicated that neither is actively sucking/swallowing as he should be, and both are, at times, aspirating some of what's going down their throats. The implications of this can be serious -- lack of nutrition or dehydration from not taking in enough calories and fluids, of course, but if they aspirate enough, they can get pneumonia. Some of the specialists have already stated they're surprised neither of the boys have had a serious case of pneumonia yet.
Long story short, we've been accepted into a program that will provide the boys with intensive feeding therapy to help them develop the skills they need to safely and effectively take their bottles and other baby foods. Because it's inpatient, the boys will be living there for the duration of the program. The program could last a couple of weeks, or as many as four. (Not sure if it could take longer.) Although it won't be an easy few weeks, we're excited that we've been able to get the boys into this program and hope it helps the boys get where they need to be. Please keep them in your thoughts, and I'll try to update the blog as we make progress.
No comments:
Post a Comment