Written Oct 14, 2011
Okay, long time, no update, but I did post more photos.
Onto the wee prince…
I said in a previous post that our house was pretty quiet. I spoke too soon. Maybe Timothy needed to settle in, but the boy has found his lungs. Not like cholic, but the kid obviously has a few things to get off his chest.
Since getting out of the joint, he has met with two pediatricians, two nurses, a special needs doctor, a surgeon, in addition to his three appointments with a special needs teacher and occupational therapist. That’s a lot of appointments, but we’ve learned a lot about him and his stage of development and what we can be doing.
The good news is that those doctor appointments are going very well.
The doctors say that he has good muscle tone. He’s not exactly a bodybuilder, but low muscle tone is an issue for many kids with Downs, and Timothy seems to be on the favorable side of that one. They say that his legs are especially good, which is ironic since they look like chopsticks.
He’s showing a lot of good signs of being alert and curious, like focusing his attention well, and moving his arms and legs a whole lot.
One issue to watch is his left ear canal, which is very narrow. It’ll be important to keep him healthy this winter, since ear infections and fluid build up could affect his hearing and impact speech development.
His colostomy bag is a bit of a drag. We are replacing it daily, but need to find a better solution. We are also praying for his soon to be buddy, Maceo Rebuffoni, who also has Hischsprung’s (the colon issue that resulted in Timo needing a temporary tummy bag). Maceo had the follow up surgery today that Timothy will have in the next few months
I had coffee with Maceo’s dad, Peter, earlier this week, and they’re a neat family. Please keep them in your thoughts.We are meeting with the surgeon tomorrow to discuss when Timo will have that surgery. As unanxious as we are to re-enter the hospital, it’ll be nice when the bag is gonzo.
I am tempted to make drinking jokes about Timothy not being able to ‘hold his formula’, but that’s too easy for an Irish kid. He’s a champion burper, but the lad is still figuring out when he’s had enough, and tends to give back change (ie, he spits up a bunch). He eats well, but is still only occasionally nursing, and we’ll need to decide soon whether the beastfeeding option will be realistic for him.
As for us, we’re doing awesome, and enjoying watching Timothy. Our challenge is the same one for all new parents — navigating the lack of sleep. We joked about it before he was born, but we’d forgotten about life in a slight haze.
But the Catholic Buddha seems to be a good sleeper and we expect that he’ll be on a real sleeping schedule soon enough, and so will we.
I’ll close with one of the more challenging aspects of this pregnancy, which was giving up our dog, Thibault. We loved him dearly, but knew that it would not work to have him at home with a newborn (for one thing, he’s a really bad babysitter). We looked for a home for Thibault for four months, and finally a family from North Branch came forward in July. No doubt it was the right decision to give him up, but we worried about his future after us.
So we were pleased to receive word from the adoptive family last week talking about how well he’s doing, along with photos showing that he’s already been to Duluth more times than us.
Because as much as we’re enjoying welcoming the new T into our home, we were worried about that little dog with the silly French name and we’re happy that he’s making a new home for himself.
We’ll feel even better when little Maceo Rebuffoni returns home without his bag.
At home and grateful,