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Wish Upon a Star(band)

Well, it has been exactly one week since we took possession of Will's new "hat" aka his Starband helmet.


Last Tuesday we went in to the office to have Will's fitting done. His helmet was ordered using the scans they took at the prior appointment but the helmet needed to be fitted once it was received to make sure it is a perfect fit and ready to start rounding out his little head. As it turns out, Will must have experienced a growth spurt over the prior two weeks because his head was larger than when it was initially measured... significantly larger, actually. It wasn't a huge deal though, and the helmet was able to be cut and shaved down as necessary. I was shown how to put it on and take it off then given a chance to practice before we left. I was also given all the instructions on cleaning and how he should wear it. Then... we were on our own.


For the first day he was supposed to wear it for 1 hour on, 1 hour off until about 1pm then we switched to 2 hours on, 1 hour off for the remainder of the day until bedtime. That night was his last night sleeping without his helmet on. He did pretty well with the helmet whenever it was on. He was so sweaty though! I was warned about that, but my goodness! I had no idea.



On Wednesday he was supposed to wear the helmet for 4 hours on, 1 hour off in the morning and 8 hours on, 1 hour off in the evening. He was also supposed to wear it for naps and bed. I quickly learned that he did not like for the helmet to be removed or put on, but once it was on (or off), he was generally okay. Actually, whenever I would remove it, he would feel his head like he was confused about where his new hat went.


Thursday was his first full day wearing the helmet. I was initially quite worried about him, but he handled it like a champ. He doesn't seem to mind it. I think it bothers me way more than it does him. 23 hours a day is a lot. I'm actually fairly used to seeing his little head covered by his helmet at this point. I forget what his head looks like, it seems, until we remove it for his one hour per day.


Today we had Will's first helmet check. He did great! He doesn't even mind the helmet going on or coming off anymore and he takes it all in stride. As it turns out, his head has grown 6mm in the last week. That is apparently on the high end which could work in our favor as his head may reshape itself quicker than initially anticipated. We take it all with a grain of salt though because it may not speed up the process. Measurements aren't the most accurate way to tell if Will's head is rounding out because of the type of flatness he has. It is important to take them though so that we can make sure that his head is growing at an appropriate rate. The helmet needed a few adjustments due to his head growth as well as his hair. His hair makes the helmet slide more so he required some additional padding in the back to try to combat that. The sides needed to be shaved down to accommodate those chubby cherub cheeks of his. He was having some red irritation when we removed the helmet each day so we wanted to try to stop that from occurring. He has another appointment in 2 weeks to do the same thing and then 3 weeks after that we will have another appointment during which a new scan will be run. That will be the point during which we will be able to see the changes in his head shape. I am super excited about that one... though I'm sure he won't be when he learns he has to lay in that box again. He did so well at that appointment and even gave Ms. Jackie (his orthotist... I think that is what she calls herself...) a bunch of snuggles before we left. He definitely likes her and that makes this whole process so much easier on us. 

So, after 1 week here are 10 things I learned:

1. There are two kinds of rubbing isopropyl alcohol... 70% and 91%. I had to go out and buy 91% that first day because it is what they recommend to use when cleaning the helmet. Does it really matter? I have no idea... but just in case...

2. Putting a helmet on and taking it off has a definite learning curve.

3. My kid can SWEAT! We knew he ran hot to begin with, but this was crazy. We have been spending a lot of time indoors over the last week as he adjusts to wearing the helmet. Florida summers aren't necessarily conducive to cranial helmet wear.

4. Steven and I can be obsessive about many things, but this 23 hour a day recommendation takes it to a whole new level. I know not everyone must be this strict with only removing the helmet for 1 hour a day, but we want it to work (hopefully) and we would like that to happen as quickly as possible so if following the directions so specifically achieves that, we are willing to do it.

5. The helmet bothers me more than Will. I miss his little head. I relish in our helmet free hour each day.

6. It doesn't matter how hard you scrub... the helmet will stink to a point. It is what it is.

7. One day I am going to miss the helmet when I need to worry again about him hitting his head if he falls over while sitting or something. We have used the phrase, "At least he has his helmet on." more than a few times over the last week.

8. I have never been so concerned about a baby's eyebrows before. You should be able to see them when his helmet is on but Will's are so blonde, they are hard to actually find. I spend half my day looking for blonde eyebrows it seems.

9. A helmeted baby that sleeps on their tummy (seriously... he started this the day before he got the helmet) can appear to be sleeping face down and unable to breathe. Don't worry. His head is probably turned but because of the helmet, you can always tell that. He actually sleeps on his side 90% of the time now but when he is on his tummy I spend a lot of time looking to see if he is face down. Funny. I worried all the time about Kenzie being on her belly but never really worried about Will (second kids thing) until this helmet.

10. People can be ridiculous. Number one question I get... "What's wrong with him?" Um... nothing. Thanks for asking. Jeez, people! I have no problem with people asking about his helmet and I am more than willing to educate anyone who is interested, but asking any parent what is wrong with their child is wrong. Nothing is "wrong" with any child. Seriously. Get it together, people. I have learned though that I feel better (after telling them absolutely nothing is "wrong") telling people what the helmet is for. Not because I want to reward their rude behavior, but because I hope that educating others will keep them from asking another parent a similar question one day.

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