Day +260

WBC 3.8
Hemoglobins 13.2
Platelets 284
ANC 1900
Retic .93
Weight 29 lbs 5 ozs
Height 33 inches

Sorry for no update last week but my computer crashed and I lost all the data. All is well though. Dani has a slight rash under her neck but we all think it is just heat rash. She did go to clinic today and received IVIG but they ran a blood test to check if she still needed it and she does not ... she is normal in that regard. She is off of steriods and we are going to start weaning her Cyclosporine (sp?) again. She will be completely off of it by October 1st if all goes well.

I am going to try to go back to work full time. We really need to increase income so we are going to try a home daycare situation. Her cousin Kendall (Erin is gonna shoot me because I am pretty sure I spelt her name wrong) will be there and they are only 1 month apart so Dani will get to spend time with other kids. Wish us luck!!!!

Dani is talking more and more everyday. She mimics a lot of words but clearly says Mom, Bye, Hi, Dad, and Einstein (Baby Einstein). She will be having eye surgery August 9th. It is an outpatient procedure and hopefully will help with keeping her glasses on.

Day +246 Good News Bad News

WBC 3.6

Hemoglobin 13.9

Platelets 271

ANC 2304

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.

Day +242

WBC 3.2
Hemoglobins 13.7
Platelets 281
ANC 1472
Retic .8
Weight 29 lbs 4 ozs
Height 33 inches

I wish Dani's WBC count was higher but she has been acting fine. We are slowing weaning off meds. She officially down to two heart meds and we will go on Friday for an Echo to see how her heart is dealing with it. She has learn the fine art of taking her diaper off. So she has mooned us a few times in the morning when we go to get her out of bed. She is doing really well with the sippy cup and regular food.

We went to our local civic center for fireworks on the 4th and Dani did not enjoy them. She did not cry but clamped on to Jason and I and did not want to look at them. You could definitely tell she was scared so Jason walked her home while I stayed with Gabe and some friends of ours. They were really pretty and only about 4 blocks away from the house.

Ethan came back home on Friday and it was a hot weekend. We vegged on Saturday and went to a pool party for my Great Nephew Mason on Sunday. The boys had a blast with swimming and playing games. They are now staying at Grandma's for a couple days.