Work-Up Week Day 5

Max fans,

Today was another busy day. We started out with a disappointing trip
to the eye Dr. We knew Max was slightly far-sighted, but the Dr. was
surprised how much. She said his eyes are still growing and he's able
to adjust for most problems so she does not want to give him glasses
at this point. She also noticed that his right eye drifts a bit. He
also has corneal clouding which most Hurler kids do. This should
improve after transplant. The most troubling finding, however, was
signs of retinal degeneration. His blood vessels in his retina are
smaller than normal. While the progression of this is very slow, the
ultimate outcome is loss of vision. The first to go is night vision
so we are to look for signs of that. When I asked her if we could
expect it to happen in the teen years she said maybe even later than
that. She couldn't tell us for certain because not many Hurler kids
have lived past their teens. Talk about depressing! We are to see
Dr. Summers again in 3 months.

We then met with Dr. Milla, the pulminologist, who thankfully reported
that Max's wheezing is getting better on the new meds. He cleared him
for anesthesia on Tuesday. However, Max woke up with a runny nose
today! He must have caught a cold somewhere, despite our manic
efforts at germ control. If he doesn't get better by Tuesday we are
worried that the anesthesiologist won't let him go under for his
procedures.

We then met with Dr. Grewal, Max's transplant Dr, who told us what we
already knew - the week did not go as smoothly as hoped, but it wasn't
as bad as Mike and I thought. He is concerned that Max's head size
grew as much as it did since we were out here in June. It is very
important that they be able to do the MRI on Tuesday to determine if
he needs a shunt. Dr. Grewal also said that they haven't had a case
as complicated as Max in a while.

We then went to see the cardiologist. Max has a mitral valve
regurgitation, a common problem in Hurler kids. His is mild, thank
goodness, and she does not need to see him again for 1 year, provided
there are no heart related complications during transplant.

Max had to get MORE blood work today and we also dropped off a
urine test we had to collect ourselves. Mike was a little lab
technician last night, with 3 pieces of urine soaked paper drying on
saran wrap!

We have the weekend off from Drs appointments and we might be moving
to a bigger room on Monday. Here's to hoping Max gets better, no one
else catches the cold, and he can be tested on Tuesday.

Also, if you have time please send a nice message to Bella, who got
her new cells yesterday (Friday).
(http://www.caringbridge.org/ia/isabella/index.htm)

-Margaret