We picked up Thomas' DOC band today. He was less than thrilled. As soon as the therapist put it on he looked at us like we were crazy. Within minutes his head was soaked. Man that kid is a head sweater, and this is his worst nightmare. At home we would see the trickles of sweat running down his cheek. He fussed his way through dinner, was inconsolable until we took it off for an official head-check and bath. He was too tired to care when we put it back on and fell asleep during his bottle. I guess that extra 6 oz. will take some getting used to.
I hate to say it, but I hope he adjusts quickly. This kid has been a dream patient through everything (okay, except needles, but do those count? Nobody likes needles.) rarely crying or getting fussy. He had one bad day after heart surgery. One bad day. I think that it what makes it harder for me to see him have a hard time with this. What makes it worse is that we really went through some changes trying to decide whether or not we wanted to even get the thing. His flat spot is not that noticeable, he has gone back to sleeping on a flat surface, maybe it would self correct. It was the stinking insurance company that turned on the final Jeopardy music causing us to make the appointment. They wouldn't pay once he turned a year old. He turns a year old on Saturday. Love you Aetna!
So now we will be doing our best to keep that boy in air conditioning. No parks, no walks, no hot cars. I signed him up for this torture device, the best I can do is make it as comfortable as I can for him.
Really, I know it will be fine, that he will adjust, it was a bad night, whatever. The truth is I think that after this appointment I used all my remaining brain cells. Over the past 8 months I have taken in so much new information about medications, feeding strategies, neurological disorders, muscle tone, Scottish Rite (let me in!), heart defects, more medications, exercises, car seats, cornea myopathy, chromosomal mapping, and more that I fear I have no more brain cells to give. Unfortunately we start a whole new topic with testosterone therapy on Thursday so I better start clearing out space. I mean, what would happen if I was illiterate? Uneducated? Had to work full time outside of the home? What would happen to my son? Maybe he would be just fine, maybe none of this matters and it would all work itself out in the end, or maybe I really am increasing his chances for success, quality of life and access to the world around him. Probably I will never know, but I hope. I mean look at this adorable face, I would do anything for him.
Some pre-helmet cuteness:
Post helmet and just as cute!
4 comments:
He is so cute Molly! Here is my encouragment - it will only last a couple of days! I promise! Okay I can't promise, but you can promise me that same thing next Monday (hopefully):) We're praying for y'all.
C
Thanks for always commenting Carole. At least I know someone reads it!
With the helmet on, he's all "yeah, I'm cute."
It does mean a ton that you are reading and researching and just in general standing as his advocate; not that you could do anything else, of course. Thomas has a great mom and a great dad who are taking such incredible care of him, even when that care involves a little more sweat from him. :-D
Hey - I love you guys so much and burst with joy and pride as I watch you both on this road.....know the Vogels are walking/running/resting with you every step of the way and our love and admiration grows deeper. What you guys are doing are harder than any navel academy! We all LOVE you all SO MUCH!!!
Your sister!
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