April 11, 2012
This week has been a trying week… our 13 hour plane ride
back to San Diego, Mondays DOC band fitting, getting documents, inspections and
various paperwork together for our home loan- I haven’t had one second to
myself. And Dani hasn’t had a lot of time to adjust to everything changing
around her. It is so fortunate she is as easygoing as she is, because I know I
could have it a lot worse. As of right now, she is sleeping for the first time
ever in her band. I put her down at 8, she woke up just after 9, and is asleep
again for now. I have a sinking feeling we are in for a long night. I don’t
blame her. The band sucks.
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| The before shot. I think this really shows the flatness we're dealing with. |
To back up a bit, last Monday was really hard. We didn’t get
in the night before until almost 1 am Dani didn’t sleep at all that night, and
we had her fitting at 10 am. When we pulled up to the medical office, I had to
sit for a moment and cry. Cry for my daughter who had no idea the hell I was
about to put her through. Cry for me because I was embarking on 8-12 weeks of
deliberately putting my baby through hell. Cry for the fact that it was only
Monday and I was already tired, worn out and beaten down from the previous day.
I cried, I prayed, and then I got it together. I put my game face on and told
myself under no circumstances was Dani going to see me upset about any of this.
I was going to act as normal as possible.
Dani was a champ. All throughout the appointment, she was
happy and seemingly oblivious to the band. I nursed her to make sure I could do
it with the thing on her (spoiler alert: it’s awkward and hard) and the OT (a
new one this time- Mary) had us remove the band to check for red spots. The red
spots were supposed to fade in 30-45 minutes. When we initially took the band
off, the indents and red marks just broke my heart. This plastic contraption
was indenting my daughters beautiful skin! Mary was great. She taught me how to
do everything. She did everything from putting on and taking off the band,
adjusting it, taught me about cleaning it, prepared me for the stinkiness that
was inevitable… then Mary had me practice everything in front of her to make
sure I was doing it all correctly. Since the band is so dang expensive, I was
treating it like it was made of live ammunition. Mary put me at ease by taking
the band and handling it a bit more roughly to get me comfortable with the idea
of this stupid thing. She
explained to me that the band was going to hold pressure on the sides of her
head where her head has been growing so far, and that will take the growth out
the back, which is where it has needed to go all this time. So far her head has been top heavy, so the shape of the band has been custom made for the shape we are aiming for. As soon as the head can essentially fit the mold, we are done. Sounds simple, right? Right??
The first few days were challenging. Truth be told, it is
all very difficult. To see my little girl wrapped in this god awful piece of
plastic is killing me. She paws at it sometimes, not really understanding why
it seems to be there. I’m sure the pressure of the band is also making her
uncomfortable. Dani is doing the best she can. Thankfully, she is a happy baby with
her Daddy’s disposition, and not her mommy's. The tough part is nighttime. She sleeps in 1 hour to 2
hour chunks. Because of this, I am a walking zombie. Our schedule since moving
back to California has been hectic and crazy (and that is a massive understatement) so
everyday there is hardly time for a nap, let alone the 2 that she actually
needs. I try not to drink caffeine due to the fact I am still nursing her, but desperate times, man. Desperate times. Without coffee, without Starbucks, I think I would have killed us both in the car already. Then the band would have been for nothing.
The first time we went out in public, I got a lot of stares. A LOT of them. We were at Michaels to buy decorations and a little girl tugged at her mom asking "Mommy, what happened to that baby?" I was crushed. I understand since it's not something you see everyday. Her mom explained it was because of Dani's development in her brain. I quickly jumped in to educate both of them that this was not a brain thing. It is a shape thing. I am now starting it all out as a joke; "Well, I am too short to be pregnant!" But my bottom line is my daughter is NOT disabled. So don't treat her that way. Oh yeah, that has happened too.
April 16, 2012
I invite anyone to ask me about what is happening with Dani. Please ask me. Don't stare at me in pity, don't make assumptions, just ask! That's why I love kids. I just saw some friends over the weekend and one of them, Braedyn, straight up asked what was up with her helmet. I told him, he got it, case closed. It was great!
After a week of this, we have been twice to Cranial Technologies to get the band adjusted. It kept sitting over her eye, and smashing the other. Today at our weekly adjustment, Margie shaved off a good bit of the front, and now it fits really well. I'm hoping this will do the trick and Dani will even start sleeping better. She is napping right now as a matter of fact... I'm hoping I have time to do everything that needs to get done in the meantime. Did I also mention we are buying a house right now, and there's a ton of stuff to do??? I fall into bed every night exhausted, only to wake up every 1-2 hours for the duration. I can't wait until Dave gets to California. It'll be "his turn" for a month. Because that's how long I hope to be asleep.
