9-30-11/experimental meds

Good afternoon.
I'm so thankful for all the encouraging responses we got from the update and pics i sent of Ayla dancing! She is really having fun with it and loves it very much. She had dance again last night and was all smiles.
This update i'm going to try and keep brief. We have had a busy day.
Ayla had her first treatment of the experiemental medication today. We arrived at the hospital and 8am this morning and didn't leave until 2. The medication itself only ran for 2 hours but they had a lot of trouble getting an IV in...once again. That was the worst part of the day. They ended up having to put it in one wrist and then board it and tape it so she had no use of that hand, which was frustrating when she was trying to play and distract herself. But it is what it is...
They gave her some benadryl before the med to prevent any allergic reaction and it made her tired and irritable while we were there. But for the most part it was okay.
They have been doing some social emotional work with her at school with a social worker so she can process how she feels about the new meds and i think she's handling it better emotionally than i thought she would. We will keep praying...God will help her...and us. The child life people at the hospital are amazing also. Lots of new toys and things to distract her. They also had a therapy dog come in, which Ezra really liked. Ayla was so tired at that point she couldn't really enjoy it.
We were also very blessed by my mother in laws' bible study group. One of the women in her group has cancer and during one of her treatment she was thinking about Ayla and suggested that they all get little toys and things for Ayla to do while she has hers. So Ayla spent much of the morning distracted by playing with new toys, coloring with new markers, and making crafts in her room. This was such a great thing...when my mother in law told me about it, i got a little teary. For a woman to be thinking of our little girl in the midsty of her own trials...THANK YOU:) God is good.
All in all the treatment went well. The nurses and staff were all great. We are very thankful for the many blessings that today provided, along with a hope for healing for our girl.
That said, i have a secret to share with you.
Last year a friend of ours that has a chronically ill child suggested a wish from Make a Wish for Ayla. For this the parents have to "okay" it and then the medical staff decide whether or not she qualifies for a wish. I sat with the paper work in my bible from last summer (the summer of breaks) until after Christmas...and finally i decided to send it in.
In March we found out that she got a wish. It was kind of bitter sweet. It was almost admitting that she was ever 'THAT' sick...but such a huge blessing.
So tomorrow, we are going on our make a wish trip to Give Kids the World in Disney World. Everything is all taken care of for us and all we have to do is relax and enjoy...I DON'T EVEN HAVE TO COOK THE WHOLE TIME WE WE ARE THERE!!!
Part of the reason we haven't said anything was b/c we are keeping it all a secret from the kids. They have no idea that at 8:30am tomorrow a limo is going to pick us up, take us to the airport and where we are going. Ryan and i keep finding out little bits and pieces about the trip and are getting more excited too. Like the limo taking us to and from the airport!! We only foudn that out a few weeks ago.
We feel truley blessed and overwhelmed...by all the things God has put in our path to give us rest sometimes.
Anyways, that's my quick update...i will let you know how the trip goes!
We love you all and value all your thoughts and prayers very deeply...

Lacy

PS, on a side note. Ryan is really struggling with work. If you think of him...please say a prayer. Thank you again...