A date with reality

William and I spent today at UNC. A few weeks ago, I realized that we had an appointment with Will's cerebral palsy clinic and his nephrologist on the same day. So when we determined that Will needed a new set of ankle braces (DAFOs), I scheduled it for the same day as the other two appointments.

Maybe that was a mistake.

Will decided not to sleep more than 2 hours at a time last night! Anticipation? No, that was me. He got himself so worked up at one point that he actually vomited, which you know for us could potentially mean a shunt malfunction! Argh! So I kept a vigilant watch on my little son for about an hour and a half afterwards, while he slept peacefully. At least I had Otis' snores to help keep me awake. Around 4am, I gave up and started Will's day. Thankfully he never got sick again and was fine all day today.

We took Will's Kid Kart with us to UNC today, so he could sit up and look around as we walked. It was a blustery day (not just by NC standards either!) and he really seems to enjoy the breeze in his face. I bundled him up tight and off we went.

Our first appointment was with the physical therapist who fits the DAFOs. This isn't a painful process, but one that Will definitely doesn't enjoy because they wrap his feet in cast material and hold them how they want them. This is a very different position from how Will wants them. Will tends to "pronate" his feet, which means that he pushes them out and down when he's excited or stressed or just trying to move in general. The DAFOs hold his feet is a more neutral position, which prohibits him from pronating. Will fought very hard during this time, and in the end, they had to cast his right foot twice. Sigh. Late for our second appointment.

Our second appointment of the day was with Will's nephrologist. We had to walk from the main UNC hospital to the ambulatory care center for the appointment, and because we were running late, I practically jogged us over there. Its been a long time since I have jogged... grin.

Will has had moderately high blood pressure since about 2 months of age. They think that his brain bleed damaged the part of his brain that regulates blood pressure. His dosage of medicine hasn't changed since he weighed 5 lbs (which we were happy about) because it meant that he might out-grow the medicine. But over the past couple of appointments, his BP has been stepping higher and higher, and today his dosage was increased.

While we were at the nephrologist, they put a urine collection bag on Will because he isn't quite old enough to pee in a cup yet. When we got in the exam room, Will was so excited to be out of the Kid Kart and lying on the paper-covered table that he started wiggling all over the place (see photos). He also loosened that collection bag to the point that when I sat him up on my lap later, he peed all over my leg. We had a good laugh together while I aired out our clothes.

The nephrologist was concerned, also, that Will's testicles appear to be undescended. So we're going to the urologist in the next couple of weeks to get an ultrasound and see what is going on. Hopefully it will be nothing requiring surgery! We've really had enough surgery for a while. Additionally, Will will be having a renal ultrasound and echo-cardiogram before his next nephrology appointment, to make sure that his high blood pressure isn't having any negative effects on his kidneys or heart. Can we be done now?

Our next appointment was with the cerebral palsy clinic. We love the doctor - he always wants to make sure that Nate and I are going on dates. Cute. But the first thing that we realize when we get there is that Will hasn't gained any weight since the last time we saw him 6 months ago. He's gotten very long but stayed right around 20 lbs. So because it has been this long, he tells me that Will is officially "failing to thrive" and it is something to be concerned about. It sure does sound bad.

So in order to avoid them giving Will a surgical feeding tube (a gastric tube), we really have to work on getting more calories into Will every day. In addition to what we've been doing with the feeding therapist, we're going to be seeing a nutritionist and also starting Will on Pediasure instead of formula for his nutritional needs. Hopefully insurance will cover the stuff, because it costs like $2 a bottle and he goes through about 90 bottles in a month's time!! But that is a fight for another day.

Other than the failure to thrive, we had a great appointment with the CP clinic. They're happy that Will's head and neck control are increasing and that he's being so active and attentive.

Thankfully after the CP appointment, we were done for the day. We got home and played with Luke and Oma and Daddy, and listened to two messages on the answering machine, both to schedule some of the other "-ologist" appointments that we learned we needed today. Deep breath.

On a funny note, we've been fighting Will to drink his Enfamil formula each day for a couple of months now. I picked up some Pediasure this evening (when I was getting my prescription for my antibiotic for my scratched cornea...) and we mixed it half and half with Will's last two feeds tonight...

He housed both bottles in record time!