Infusion #8 9-2-11

Infusion day #8. We got up at our usual time 6am and woke Avery up at 6:30a.  I sat her down at the kitchen table for breakfast and she pointed at her arm and said "ouchie." Wade and I just looked at each other......she knew...she knew it was infusion day. It completely broke our hearts.  She finally understands what is coming, what the day will bring, and how it will feel. I would do ANYTHING to take that feeling away from her. It makes me sick to my stomach. What can you do? There is no choice here.  We must do these infusions to save her life.
The day continued on like normal. An hour drive that usually Avery and Mommy sleep.  This time we didn't. It was a quiet ride. At one moment I looked back at Avery and she was looking at her left leg.....trying to pick hair from her leg. She realized she had leg hair for the first time...and I watched every second of it. It was really neat. Sounds silly I know.  But I loved it!
We got to the hospital at the normal time and upstairs to the infusion room. We always have to wait, wait, and wait for the drug. Ugh..gets annoying..but out of our control. I was so dreading Avery having to get her IV in. But when we walked in our favorite RN was there, Karen. WHAT A RELIEF! She always gets her IV on the first try.....no different this time, she got it on the first try! You think we would all be happy, not exactly right. Since Miss Avery now knows what is coming she immediately started to scream when Karen sat down to do the IV. Wade was holding her which I prefer. For some reason it is easier for me to watch and not have to hold her down. She now has to be held by a couple people...her legs and arms and the shoulder that is getting the IV. All this while she is crying and screaming.  It is a nightmare. I feel like I hold my breath the whole time....along with an extremely sick feeling. So the IV is in and we are still waiting for the meds from the pharmacy. It wasn't until 10ish that we got started. The actual infusion went great and really quick! We were out of there by 2ish and home by 3! Nice. 8 down and the rest of her life to go :(
Enough with the "negative"  ....Avery is doing amazing. She is moving everywhere. She stands so much...mostly holding onto furniture. She is hitting the terrible 2's, and fast! She screams when she doesn't get her way, says "no" constantly and throws her food and plates all the time.  I think it is great!.....when I'm not pulling my hair out. :) How lucky are we to have this little girl who is surviving this and is leading a somewhat normal life. Not one day goes by that I do not thank my lucky stars for her life. I try to live everyday..day by day and enjoy every single second.  That is why the leg hair was so neat to me. She is getting stronger by the day and so is the whole Meyer/Nagelkirk family. Mya continues to cheer Avery on and will be the first to say "Mommy we are so proud of her..aren't we Mommy." Mya says that everyday at least once. We have noticed Mya acting out a little more that normal...especially since Avery started using her walker more. We are trying to deal with it..but it is really hard and frustrating.  We want to make sure she knows how important she is in Avery and our lives. We refuse to give up, settle for anything but OUR best, and hope more than ever there will be a miracle drug that would help Avery even more. My family comes first and  I refuse to let ANYTHING get in the way!  I've said it before...We will not give up! Especially Miss Avery Kay!