Sunday, May 24, 2009

We’re Home

March 31, 2009 to May 20, 2009 121

It feels so good to be home, I missed our three other kiddos so much and was so glad to see them!  I also missed sleeping in my own bed, but even more I missed having Lucy sleep in her own crib!  Our drive back was relatively easy as Lucy slept off and on for most of the fifteen hours.  As for Drew and I, it was nice to have the uninterrupted time  in the car to talk about the events of the past week.  We left Atlanta Friday morning after cleaning up our room at RMDH and packing up our car.  We were not sure if we were going to be able to leave on Friday because when we woke at around 6:45am Lucy still had dry diaper.   She was going on over twenty-four hours with no urine output!   Drew and I were preparing to take her to the hospital when she FINALLY had a soaking wet diaper!  We were very relieved to change this diaper, but are now very concerned with why this happened.  I mentioned before in a previous post that we have noticed on occasion that Lucy can get bloated and puffy and have very little urine output, but this usually goes away in about the same amount of time that it happens.   Obviously, we will be following up on this issue.

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As for her biopsy incision, it’s amazing how quickly kids bounce back, she is feeling so much better.  We only gave her pain medication for about a day (It’s working at its best in the picture above).  She is now allowed to get it wet, which is a good thing since the weather here is hot and the kids have been playing in the hose outside.  In a week or so we can remove the bandage and see how it’s healing.  She has a small bruise around the site of her lumbar puncture, but it does not seem to hurt her.  She is happy to be home, happy to be surrounded by her brother and sisters.

Our experience in Atlanta was more than we thought it would be.  Dr. Shoffner was able to give us some answers to many of the symptoms that Lucy experiences.  He does believe that Lucy has a metabolic disease, specifically he feels that many of Lucy’s issues are related to autonomic nervous system dysfunction.  I can say with confidence that when we left our appointment with Dr S.  we knew we had made the right decision to have her muscle biopsy done in Atlanta.  The facilities at Scottish Rite Children’s Hospital exceeded our expectations in every way.   Lucy was well taken care of by the team of doctors and nurses there.  Can I just say that southern hospitality is truly alive and well!

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