Written Sep 30, 2011
The overall picture is that Timothy is doing very well. He’s healthy, he’s eating, he’s alert and curious, and he’s sleeping for a few hours at a time. These are all good things. His biggest challenge lies with trying to get him to breastfeed, which has been frustrating, but Laura is not giving up.
Also, the colostomy bag is a challenge. We’re lucky to be getting help on the ostomy from our guardian angel, Pat Keegan, but we’re struggling to find the right solution there that stays on and doesn’t irritate T’s skin. Not fun. It’s pretty stark when his bag is off to see what looks like two red cherry lifesavers (his holes, or ‘ostomies’) just above his belly button. If nothing else, this kid will have some great war scars to show his buddies.
He’s also not gaining weight fast enough. Though I’m a bit jealous that the other Lee male is being encouraged to come back for seconds, we need to bulk him up so that he can have the second surgery on his colon soon. That will be where they reattach the colon and he should resume his normal digestive tract, and then ding dong, the bag is gone. To get that surgery out of the way, Timothy needs to put some weight on those popsicle stick legs of his.
This week our work begins with the school district reps, where they’ll do some assessments of Timothy, and some initial occupational therapy. They’ll be teaching us exercises that we can do with him to strengthen certain muscles. That’s the beginning of really starting to face Down syndrome. Because up until now it’s just been about having a newborn. And that will continue. But we know that there are some developmental challenges he faces, so let’s identify those risks and figure how to get him on track.
In my sleep deprived fog, I forget how easy it is to get overconfident at night — that once baby boy has fallen adorably asleep in your arms in the rocker, you con yourself into thinking that you’re almost in bed yourself. But not so fast, because the baby owns the night. It’s like‘Dancing with the Stars’ meets ‘Survivor’, as you match wits with your newborn and try to calmly put him down and then try to quietly escape from the newest member of your family. And if he stirs, you’re back in the rocker for another attempt.
One of our overall challenges is to remember that we’re a family of 5, not 1, or even of 3. Timothy may be the performer on the main stage right now, but we need to keep both of our daughters firmly in mind, and continue our regularly scheduled teen parenting. Good to remember as the Homecoming dance approaches.
I will say that having a newborn has been very tiring, really disruptive, and attention stealing. But I forgot how incredible it all is. To see him wake up. To hear him hiccup and burp and giggle at 5 in the morning. Just to watch him. Because I am a self professed ‘not a baby person’, but that totally melts away with your own kid. And this kid’s special.
P.S. I have had people ask if I am going to continue to write about Timothy. I’ve decided to set up a new blog in the next week or two to continue this off Caring Bridge. Will keep people posted.