Isaiah and I survived our first Mommy-and-son trip to DuPont. We had a quick appointment with his ENT...Isaiah had some blood come out of his ear after water therapy on Friday.
All is good. He has a cut inside of his ear that's healing...a few more days of drops, avoiding getting it wet this week, and he's good to go.
After seeing the ENT, it was time to get Isaiah's helmet. Isaiah is getting a helmet to reshape his head. The back of his head is flat from his being on his back thanks to the c-pap tube for his first 7 months of his life. He has a bulge on the right side of his head, likely enlarged due to his brain having to go somewhere! Also, it's common for severe OIers to have a triangular shaped head. We're trying to give Isaiah the chance to have a round-shaped head and this is how to do it.
Here we are after the helmet was first put on.
We were hiding in the bathroom. You see, after the fitting, we were recommended to go for a ten minute walk around the hospital...well as soon as we walked out of Lawalls Orthodics and directly into the massive (and busy) waiting area for Day Med, Radiology, and the Cast Room, I felt all eyes come our way. I heard a child coming out of the cast room yell "WHY DOES THAT TINY BABY HAVE A HELMET, MOM???" (Thank you, mom, for coming up with an answer for your child instead of telling him not to look at us.) I saw those pity-filled smiles. I felt uncomfortable. I wasn't ready for that.
So I did what any reasonable person would do.
I brought Isaiah into the bathroom and hid there.
I know this is an attention grabber...I know Isaiah is an attention grabber (I mean, helloooo, he's adorable.), but I just wan't ready for that in DuPont. DuPont is my safe place. There are so many kids that come from all over just for the doctors at DuPont, and so many of those kids are unique, although they don't have OI, they are just like Isaiah. I feel like Isaiah fits in.
I just wasn't ready for those stares yet. So we took selfies like kids in a high school bathroom mirror.
Once I was done hiding, we went back in to Lawalls.
I was given directions on how to work Isaiah up to wearing the helmet. We're to start out with it on an hour, off an hour for one day (while keeping it off for naps and nighttime), then 2 hours on, one hour off for a few days (again not wearing it during sleep), then 4 hours on, one hour off, including naps, then 8 hours on, one hour off, then 23 hours a day.
At first Isaiah wasn't too sure about this helmet thing...
but he quickly learned he could go about his business with it on him.
The process of getting it on and off while just the two of us has been extremely challenging. I need at least 1 more arm. Isaiah doesn't have enough strength/control to sit up on his own so I have to balance him between my legs and try to get it on him without hurting him....it's not an easy task. Honestly, I'm not sure if I am going to follow the guidelines to get us started or just go gung ho (except for sleep) since that's the hardest part for us.
I have to watch for the pressure points on his cheeks, if redness develops and doesn't go away within 20 min on its own, I need to bring him in to get it adjusted.
Speaking of getting it adjusted, we have to go back weekly for that at first, then biweekly, then monthly. They'll make adjustments, shave down areas, add padding in areas, etc...
But so far, so good...I think! I'm not sure how long Isaiah will need to wear his helmet, but we expect it will be a while. Each individual's path with a helmet is different.
I'm devising a plan to spice up the helmet. Because if we're going to grab attention, I at least want it to be fun...
As always, we'll keep you updated on the progress. :)