Friday, September 28, 2012

Clinic update

Two hospitals.  Two big clinic appointments.  Two very long days this week.

We spent most of Monday at Scottish Rite with the rheumatology team and most of yesterday at Children's for Keegan's regular transplant cardiology appointment.  Overall, the consensus is that Keegan is stable and doing alright.  And we will definitely take that and run!

We are still anxiously awaiting the genetic labs (for SCID) and research labs (to identify an inflammatory pathway) being run, but they will likely not be back until after Thanksgiving.  His labs are mostly stable.  Right now, his white count and ANC are in the normal range.  Keegan's are always, always, always low, so "normal" numbers could indicate he is fighting something - either a virus or breaking through the lower steroid dose.  He does have a slightly runny nose.  We're hoping that is the culprit for now.  As long as he continues to stay fever free without other major symptoms, we will continue with the milligram-per-month schedule while we wait on the big lab results.

Audrey, Gray, and I also gave more blood this week to the rheumatology research scientists so they can try to do a complete gene map for Keegan.  They have to compare the samples of our whole family in order to determine what might be unusual about Keegan's code.  This is exciting news, and we are extremely grateful that the head of the research lab was interested in pursuing this for Keegan.  As is usual though, these things take time.  The gene mapping project doesn't really hold a lot of potential for treatment information, but it is interesting to know.

In the meantime, Keegan is still powering through his regular therapy sessions - physical therapy, speech therapy, and ABA therapy for 9 hours per week.  The big news is that next week he will be starting homebound school services through the local school district for another 2 hours per week!  Because he qualifies for pre-K through the school district, he also is able to get that teaching in the home since he can't attend school.  I don't have much more information that that at this point.  I'm still waiting on the teacher to call me and forward the curriculum, but it's exciting stuff!  That's a lot to ask of Keegan - 11+ hours of services per week plus appointments.  Whew!  But I think it will help him exponentially though, and so I hope he will power through.

We are trying to make the most of the coming weeks, enjoying time together while we wait on the "big labs".  Thank you for continuing to keep Keegan and our family in your prayers during this time.

2 comments:

Greg said...

Sounds like great news.

Out of curiosity, what are the genetic tests being run that take 2 months for results?

Greg

Maddie said...

Hi Greg, thanks for asking. The genetics are specifically for SCID, Severe Combined Immunodeficiency ("Bubble Boy Syndrome") and mutations on the TBX1 gene. The rheumatology team is running some research level labs on the inflammatory pathway to see if we can't pinpoint in practice where the defect in Keegan's immune system is, in case the genetics are inconclusive.