It's all Priceless...

Julia feels better! She slept all night and woke up, ate 2 pancakes and was off to celebrate her little sister's birthday. Thank you, God! I really hate when Julia wakes up feeling sick in the middle of the night. It really means she's not feeling well. I was really getting worried. Julia kept up her regular schedule, she went to math camp this week, but she was laying lay at home. My deadline to call the Dr. was this morning because tomorrow all I can get is the service and I hate calling Dr's on Sundays. I also despise taking Julia to a walk- in med center or really anywhere where the doctors don't know her medical history. NF is such a little known medical problem that it's just not worth the stress. Her regular Doctors and NF specialists are the only people I trust with her, it's annoying when other doctors tell you something that's not a fact about NF. It becomes much scarier and then I really get worried. I also tend to drive myself and Anthony crazy- I'll ask him the same question like he's a Dr. and can tell me the answer. A few months ago I told him it would be really helpful if he could go back to medical school! I'm nuts!

It's amazing how much we have to trust Julia's doctors. We are literally trusting them with her life. We have to trust everything they say with a faith that equates to the faith people have in God. If your in this situation you know exactly what I'm talking about. When we had Julia's first MRI due to her continuous headaches we found out that Julia had suspicious areas in her brain stem. We have to trust that these experts know exactly what their doing. We have to have faith in their expertise in their care of our ladybug. Easy to say or write about but very hard to follow on a daily basis. We love Julia's neurologist- he came on The Today Show and gave Julia an award. He's so great because after we leave his office we think of a questions, probably one he answered for us already, and he always calls me right back or e mails me the answer. I prefer to e mail him and then we can re-read his answer over and over. It's difficult to digest all this information. I feel like a person whose faith is shattered. I have faith when I'm in church, which is rare, or in the doctor's office and I walk out and it disappears. I spend days searching, trying to get it back. I read about other people's very strong faith and I pray mine returns. I'm thinking a good first step would be getting myself and the kids back to church. Wish me luck!

In other news this summer my large family is really becoming a meshed 6 pack. That first year after a baby is born is such a magical, crazy, wondrous adventure, one where every person has to find their new spot in the family. My fantastic four are falling into nice little spots! Anthony has been home a lot this summer, I only worked one week of a camp and we've just been enjoying each other. Planning the carnival together has helped that. The kids feel like their helping Julia in the only way they can. A.J. and Julia planned all the games for the carnival. The kids and Anthony built a bunch of them together- wait until you see the potty toss! My very fabulous friends and family have volunteered tons of other things. I am floored everyday by people's generosity. Melik Studios in Florida (thank you Cynthia!) e- mailed me and offered to make all the signs for the carnival, it's been amazing how many people have called or e-mailed me and offered to do things. The teachers in my school who volunteered to run the NYC Marathon, my friends who put together and drop of baskets for me to raffle off, Glen Cove Beer Distributor- he loaded my car full of soda and water for free, just everything from so many people. Thank you doesn't seem like enough, but Thank you! Fundraising is difficult because it's very hard not to take it personally. It is personal- it's our baby girl. It's hard to hear a no and try not to be angry, we're only human and we feel like we are literally racing for research, a race against time. So thank you all very much for not making me have to ask you, thank you for just calling and asking me how you can help there really aren't words enough I can say for what it means to us. I print out the e-mails, the facebook comments and I save a flyer from each thing we do or go to and put them in a box that I'm saving for my ladybug. Someday when she's old enough to understand I will give her her ladybug love box and she will know how many people have been rooting for her. That's priceless.