Dani's numbers are a bit improved and we will take it. We went to the cardiologist today to check how her heart was doing after weaning off two of her four meds.
The good news is her heart is functioning normally. Her Ejection Fraction was 60. 55 is the low end of normal and it was 47 in June. When she was a newbie it was 36. Her shortening fraction was 32 . Less then 25 is very bad. When she was a newbie it was 18 and the last visit it was 28 (in June).
The bad news is her heart valves are thickening and leaking. This will be a wait and see scenario and right not he is not overly concerned about it. I will be doing research from post transplant Hurler kids and see if I can find anything. Jason and I thought as did Dani's cardiologist that we would not have this issue post transplant. Maybe it was missed because it was so slight and her heart was so small when she was born but we do not know.
The pics our in our backyard with the kids enjoying the pool. We have had it for a few months but I just got up the energy to blow it up. Hehehe. All of the kids had a blast. Dad was a bit of a worrywart about Dani being in it by herself with the brothers so I unfortunately had to get in too. We had fun.