Day 32

It is 11:00PM and Lydia is playing in her exersaucer.  I am trying to get her good and tired before she falls asleep tonight.  She doesn’t look like she will be falling asleep any time soon, but it is worth a shot.  I am just glad she is feeling well enough to play.

Over the weekend she took her bottle very well, but yesterday (Monday) she stopped.  Because she stopped taking her bottle, Dr. Burrows had a feeding tube placed to test whether her tummy could handle feeding.  So far so good.  If her tummy reacts poorly then she will have a stomach biopsy to look for Graft Verses Host Disease (GVHD).  Today she started to take her bottle again.  Praise God!   

Yesterday was kind of a hard day for her.  She felt pretty puny.  She received a blood transfusion which perked her up a bit.  It turned out that on Monday Lydia may have been having a reaction to one of her meds.  Her Tacrolimus level was much too high in her blood stream.  It has been corrected and now she feels better.  She is getting rashes again.  I always worry that it is from GVHD, but there are possible other sources.   

The bone marrow aspiration is tentively scheduled for Thursday.  She will most likely have a skin biopsy at the same time to test for GVHD of the skin.

Lydia still has the Rhino Virus.  It makes breathing uncomfortable for her at times, but she doesn’t need any extra oxygen.

Lydia is really doing well.  All of the little set backs are just that – little.  Our God is so big.  I get frustrated at a lot of the details, but the big picture is beautiful.

Thanks again for your continuous prayers for my baby girl.  God listens and loves.

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