Our week has been pretty uneventful (which isn't a bad thing in this house). Brady has become pretty mobile, which makes things a little more challenging for me! We've been busy preparing for the boy's birthday party for this weekend, and if we stick to the plan, it should be just fine.
I've been emailing back-and-forth with our GI doctor's nurse. She said that Jaxon's VIP number came back as 38.2. She said the normal range is 20-42. Soooo I assume that means a pancreatic tumor is not a possibility? And I assume we'd be called in if it were, but I will be discussing it further at the next appointment. I had attached the latest clinical study for the Motility specialist to read and requested the next round of tests to be considered. Since the clinic study said that only 100 children a year are diagnosed with this disease (and the mortality rate is strong at 30%) I feel that we should do further testing to see which parts (if there are more) of his GI track are all affected here.
The motility specialist told the nurse he read the report and agrees that it's a very rare disease and we should plan to do 2 more tests in early 2010. One to re-do the one he had to see if things have improved or not, and one that tests the large intestines/colon.
I have an entire list of things to go over with the doctor at our next appt (7/22).
We've received the results for 2 of the 3 labs done for the holistic medical facility. I can't really interpret the results of the stool labs (bacteria etc) but the blood work for food allergies seems pretty good! Looks like he may have some allergies to some fish, but everything else looked good. We have a phone appointment scheduled next week with the holistic food counselor to review the study and hear what she has to say. We're waiting for the urine labs to come back to have the big meeting with the doctor to get their suggestions. So I will keep you all posted!
So far Jaxon is doing well. We have his pump rate up to 36 mls/hr, so he can be off the pump for over 3 hrs at once each day. This will be nice for his therapy and physical development (and to mention his birthday party). We just hope he continues on the path he's been on this past month!
Ahhh yes...Big B at his finest.
The boys were super happy around 6:30am.
This would be my solution to Brady taking off while I'm tending to Jax!