Doc visit

Today went okay. It was a long day (as all doc visits seem to be). We got to the hospital at 9 and went straight to the cardiology department. Alivia had an EKG and Echocardiogram. Figuring out the timing of the morning was the hardest thing. I had to give her the hydroxyurea one hour after she ate, she woke up at 7, it takes about 35 min to get to hershey, we had to apply the numbing cream, which takes one hour to work, she can't eat for 2 hours after the medicine, the numbing cream wears off after 2 or 3 hours. Lots of remembering what comes next and hoping that each appointment went exactly as planned. We checked in and I gave her the hydroxyurea and they paged the Echo-tech. It took a while for him to get there and he had us go to the room. But he wasn't even ready and going to the room just made her freak out. So we walked around in the hall to calm her down. Then he was finally ready. She cried in the beginning then my dad finally got her to laugh and calm down but it took so long that she got freaked out again and started crying towards the end. He "finished" and reviewed his pictures and realized he didn't have one that he needed so we had to do more (even though we had finally gotten Livi calmed by saying we were all done....opps). After one more pic we were done. We took turns walking her around the north lobby since they didn't even page the EKG tech till the first tech was done (makes no sense to me...why not page them both at the same time and have it all set up for when one is done? Oh well) The EKG was much better because A) it was a women and B) she got to stay in her stroller. After all heart related activities we headed to the clinic. She did a great job being weighed, measured, blood pressured (made up a word) and temperatured. By then it was around 11 and she was getting hungry. But they had said that we should have her eat right after the Gleevac and that wasn't going to happen till around 12 cause I had to learn how to prepare it from the pharmasist. So we got her port accessed and blood drawn (it worked the first time...thank God!) then saw our doc. then he and I talked about the meds and the million and one possible side affects. They have to tell you every possibility but its still really really scary to think of her having side affects. then the pharmasist showed up and showed me how to do the medicine. In the mean time Alivia fell asleep. So we had to wake her up to take the meds. It tastes terrible according to everyone. She did great for the first little bit but then got a taste and started to scream. It was terrible. She was chocking and trying not to swallow it but we had to make her do it. I hated doing that to her. And I"m sure I'll hate it tomorrow too. She will have to take it once a day everyday. And it doesn't come in suspension so I have to crush the pills and dissolve them in liquid (only water or apple juice) I might try some other things...like putting it in yogurt or icing. (please no suggestions for what to put it in...believe me we've thought of them all)

We couldnt' all go to lunch cause they wanted to keep a close eye on her and apparently the cafeteria is too far away. So we feed Alivia in the clinic then my dad and I went to lunch and left Alivia with the "singing Grannies". Hear they put on quite a show. Then dad and I got back and relieved the "grannies" so they could go eat. While they were gone, Holly came in and told us we could go home. So we got the port de-accessed and my dad went to get all the prescriptions...but someone had forgotten to call the Gleevac in so my dad stayed while my mom and I took Alivia home. She was asleep before we even left the parking lot. She is such a trooper. Even when we are doing the scary stuff she still tries to be happy. And as long as no one "scary" is around she's happy Livi. I love that girl so much

Thanks to Loretta Bueche for dinner the other night, Ruth Ann Millen for the sweet and encouraging card, Betsy, Greg and Zach Camp for the pig and books, Jill Piper for her generous gift and Beth Young for the toys for the kids.

Also thanks to everyone that has ordered a bracelet. There have been some requests for adult bracelets that say Baby Livi. AT this time we have a ton of the other ones left but if we have to order again I will be sure to have the adult ones say Baby Livi too. Also thanks to everyone that has sent their money already. It would be great if you live far from me and I have to ship to you and there are a few people from your area that have ordered bracelets if you want to all go together and get a padded envelope for me to send the bracelets in. Otherwise, please include a few extra dollars for stamps/envelopes if your bracelets need to be shipped.

Please pray for healing
Pray that we find a way to give Alivia the meds that isn't horrible
pray that she gets some sleep...one of the possible side affects is insomnia which just made me laugh when I saw it.
continue to pray for Ian. Yesterday the doctors were not encouraging about his prognosis..but today they are a bit more guarded. There have been a few signs of some brain activity and so they are saying he took a small step forward. That means he needs even more prayer. Pray for him, his parents, brothers, sister and girlfriend.