Thursday, November 9, 2017

Maci Turns 6 in 10 Days!

I have always said, no news is good news, so I know I do not update often.  I never want to be one of those Mom's who update on a regular basis without sharing something of value nor be one to create something more or to be dramatic over something minor.  Maci has remained a "healthy" and happy little girl.
She will be SIX YEARS OLD in ten days.   

Maci had her check up with her kidney doc at LeBonheur on Tuesdy.  I go ther lab results back yesterday afternoon.  We have to increase the amount of Vitamin D supplement as well as give it to her daily vs three days a week.
Her kidney labs are also increasing which is not good.  They were up from our last visit and even more so from the visit before.  Her doc said that if they continue to rise, our first action will be to increase the amount of water that she gets daily.  Simple enough, however the thought of her numbers increasing makes me feel very uneasy.  I have grown VERY spoiled to her being off  of dialysis.  Life is SO much easier......not just for me but for Maci too.  I am trying not to allow worse case scenerios take up space in my head.

We have our visit to Biringham in a month.  Rick (Maci's Dad) is going to be going through the procss of being tested to be a living kidney donor.  He was a previous match for Maci but due to her previous transplant she has created antibodies making a match very difficult and her Dad is no longer a match.  Should all of the testing go well, he will be part of the kidney exchange program with UAB.  Although he is not a match for Maci, he could be a match for someone else and someone tested for that person who wasn't a match could be a match for Maci.  Rick will only donate in the case that there is a match for Maci and we can "exchange" living donors.  Should you be interested in reading more, visit

Her doctors at UAB/Children's of AL have also discussed with us in June, desensitization, a process of attempting to remove or lower Maci's antibodies through IVIG therapy.  They recently sent over the information to LeBonheur but I asked her doctor to hold off on moving forward until we speak to the docs in AL next month, especially since Rick is going to be tested for participation in the exchange program.  The unknown makes me nervous.

If you could just say a prayer for Moo and that we patiently let the chips fall where they may. 
Wishing you all a very hapy holiday!
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