Weight 25 lbs 3 ozs
Today was a day I will gladly put behind me. I will start from the beginning and include every moment so sorry but it is going to be long.
I was very much hoping that we would have the results back from her enzyme test by today so we did not have to spend 6 1/2 hours at clinic. We got there right at 8:40 am. My niece watched the boys for me before school and they only had a 1/2 day so she stayed for them to walk home ... Thank You Trish!!!!!
When we arrived I knew it was going to be an off day because we did not have our regular nurse Cheryl. We normally get out at 2:00 but we did not end up leaving today until 3:15. The nurse practioner came in and said her enzyme level on her blood test came back as normal level. WONDERFUL NEWS!!!! So I said we did not have to do her enzyme treatment today? She said she still wanted to do it because her urine test has not come back yet. Her level was at 77. To begin with it was 0. But Yvonne could not tell me what normal level was so I called Jason to try to google it. He could not find anything and ended up calling the genectist (sp?). They said they are happy with kids with Hurler's having a level of 17 so for her to be at 77 was awesome.
I was not happy with having to sit there for that amount of time if she had a normal level of Enzymes but I did it anyway.
They also said that her rash could be Graph Vs Host Disease. They volleyed back and forth all day with it could be GVHD or it could be viral. So we still do not know. They went ahead and prescribed steriod cream for her and she already has had one rubbing down with it.
The next hit was her WBC and ANC levels. They were REALLY low. Jason was very concerned about going until Monday without rechecking it so the home nurse is suppose to be coming Friday. All her internal levels for her liver, kidney, and such are fine. They all reassured us this was normal for it to go down this low because of her being weaned off the steriods and with the rash. They also said it might not start going up again for a month because her body will take awhile to fight off whatever she has.
Jason and I just have an uneasy feeling about this whole thing and there was a lot of changed story between Saturday and Wednesday. Please keep good thoughts for Dani and that she is just going over a bump in the road.