Something to CeLEbrAtE!!!

So much to celebrate over this last weekend. To start it out Faye had a wonderful birthday! The wh*le day was wonderful, Faye was spoiled and LOVED every minute of it!
She even woke up that morning with a little more normal eyes!The one really swelled up eye went down a bit, while the other eye swelled up a little more. But still she was not bothered by her eyes, and she was not about to let them get her down on her special day. The first thing she said to me when she woke up was "oh mom, we need to tell dad to bring a measuring tape, because I need to see how big 4 is"Nick, Mitchell, Nixon and Grandma were going to head up later in the afternoon.....Mitchell told Nick "let me see another picture of Fayes eyes, so I don't act surprised or freak out when I really see her".For her birthday we had an extra lot of dressing up to do! And of course we had to make our way out into the hall, to let everyone know we had a birthday girl on our hands! Showing me she is unhooked. The nurses and doctors were nice enough to let her break away from her IV cart to party for a bit! It's probably the best present she got!When we asked Faye what kind of cake she wanted she told us she wanted one with Sleeping Beauty on it. Nick and I had decided that if she was going to spend her birthday in the hospital we would get her a cake from this little cake shop by our home.The week we were home Nick and I snuck away, left the kids with Grandma and picked out the cake. We then also paid for it. When Nick went to pick it up they said they needed to refund us our money, and that someone had gone in, paid for the cake and wanted to remain anonymous....Nick and I couldn't believe it, we hadn't even really told anyone that we were getting her a cake from there.....such a wonderful surprise! Thank You whoever you are!The night before Fayes birthday I was decorating her room after she had gone to sleep.She woke up while I was standing on a chair trying to hang things from the ceiling.And for her birthday she wanted to feed Nixon a bottle! You can see that she didn't last very long...she was already getting tired of holding the bottle!Faye also LOVED the birthday video, she has watched it many times, and every part she says is her favorite! A visit from Some of the Purple Team (they are the team we see every morning and they give us updates and check on Faye) we only think it is fitting that we get to be part of the purple team! The one on the right is Fayes primary oncologist Dr.Margolin...she is fantastic!Checking to see how big 4 is!39 1/2 Inches if you were wondering!After all the partying was done, and we could celebrate the puffy eyes going down, we were also excited to celebrate that the itching has gone down considerably also....because I don't know how much of this her back could have taken!I was telling Nick I have come full circle. When I was pregnant with Faye I was so ridiculously itchy. I would scratch so much my stomach started to bleed a little, and I was always making Nick scratch my back. Well now I could feel for Nick and Faye! Nick because he would scratch my back for hours....and Faye because there are just places you can't scratch yourself, and starting to bleed! It's all no fun. We sure are glad that is over!

Aunt Katie flew in yesterday, she is spending the week with the boys. We made her wear a mask because she had just gotten off the plane, and who knows what she was carrying with her! You can never be too careful. It's about time Nurse Katie met Aunt Katie!Nurse Katie was excited to meet Aunt Katie, she thanked her, because of Aunt Katie, Nurse Katie was the first one to break through Fayes shell!For all those who worked on, attended and supported the fundraiser on Sat, Thank You, we heard nothing but great things about it, and are truly grateful for all that you did! A simple Thank You just does not seem to do justice for the gratefulness and love we have felt! From the few photos and video we have seen from it, it looks like it was a party, wish we could have attended!

What questions should newborn screening long-term ... [Genet Med. 2011] - PubMed result