Hard Hat

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!

Doggie Vac

Before we had kids, I remember Mike and I wondering could we ever love our own child as much as our dog? There was no way that he or she would be cuter than Dexter. Not to mention his loyalty, his companionship, his charm. We were in doggie la-la-land, and he had it good. Treats, long walks, tummy rubs, sleeping in our bed. It was doggy utopia.

Then Olivia came. Dexter who? Treat money was spent on diapers. Long walks were now with a stroller not a leash. Tummy rubs? I had to hold the baby. And the few precious hours of sleep I got were not going to be spent with a smelly dog, for we no longer had time or money to groom him as often ourselves or professionally. He knew his position in the food chain had changed (there was rarely food in the bowl), and thankfully never took it out on her, instead he started running away.

It was fun, driving the streets of our neighborhood in my pajamas, on four hours of sleep, hanging a squeaky toy out the window and yelling with my newborn in the back seat. Good times.

Well, thankfully life has improved greatly for Dexter over the past three years. Olivia learned to throw a ball. She started walking and later holding the leash herself. She loved to be outside and even moved to a big bed where there was plenty of room for Dexter.

But best of all was when she started eating. Food fell from the sky in what must have seemed like a dogs version of those raining Skittles commercials. A regular smorgasbord for Dexter, and I was never going to complain for I never had to sweep.

Then came Thomas and it is was like Dexter knew there was a light at the end of the tunnel. He loved on Thomas from the beginning, licking his toes and head, laying next to him on the floor, letting Thomas pull his hair. Never once has he run away, even when the dog bowl was empty. And now it is time for the pay off. Cheerios, black beans, crackers, veggie puffs, cheese, banana bread. Dexter is in dog heaven. And I am glad, for he deserves it. He's a good dog.

Helmet Head

We are going to get Thomas' Doc Band helmet on Tuesday. The casting was a couple of weeks ago and I think it is a positive sign for how he will handle the actual helmet that it went great. He hardly whimpered.



For some reason, I could not stop giggling when he had the cast on. I mean how cute are those puffy cheeks and only the pacifier sticking out from the mesh?




I am amazed how much stronger he is since his surgery. He is holding that heavy cast up while sitting practically on his own. What a stud!