"She looks good"

To truly understand our day we have to go back in time to last night...where it all began. Alivia went to bed at her normal time and slept till midnight. (I didn't go to bed till midnight cause we were up chatting on the phone) Oh good I thought...just like the night before where she ended up sleeping 8 hours after her midnight bottle. No such luck. She woke up at 2:40 and was up for the rest of the night...minus some cat naps while being held. She would fall asleep but the second her bed was close by she was awake and crying. So you pick her back up and she would fall instantly asleep again. I walked her from 2:40 till 3:40 sleep for an hour while Mom walked her. Took her back at 3:40, changed a diaper and walked her till 5:20. At 5:20 my arms we dead and I was so tired I was getting silly. My dad walked her around downstairs in her umbrella stroller till 6:30 then my mom took over till 8. So no one got any sleep last night. We were all tired and just a little over sensitive. Except, of course, the queen who was amazingly happy. All those cat naps added up to a good night sleep for her..Go figure

"She looks good" was one of the lines the doctor said more than once. Her levels all remained constant (the white cells dropped about 9 thousand but he said they were amazingly stable). He talked to at least 2 specialists..Although he said he talked to 3 he didn't discuss the 3rd one. One was the JMML specialist from Alabama who said that people don't have that many eosinaphils with JMML. There is still one test outstanding but they are pretty sure its not JMML. The one JMML expert said that he knew what she had and mentioned a parasite (from either a cat or a dog) that he had seen in 2 children that made their eosinaphils really high. Unfortunately our Dr. Had already checked for that parasite and it came back negative. He did say that he was going to make sure that both the cat and dog version of the test was run on her blood. So there is still an outside chance that they only ran one version. That is what everyone is hoping that it comes back as this parasite. He said we are getting closer and closer to it being hyper eosinaphiliac (spelling??) syndrome which is a disease they usually see in adults over 30. All of the experts that he talked to said they wouldn't be treating her yet either since they aren't sure what they are dealing with and their have been no side affects yet. They all said they would continue to try to figure out exactly what it is. Once you start treating it changes the way the blood and marrow appear and it would be impossible to diagnose afterwards. So everything stays the same for now. We continue to go along like we have and pray for no negative side affects.

One of our other big discussions was about a second opinion. He said he would welcome one and might actually recommend one in another few weeks. He told us of some people he would recommend. We also talked about a doctor at Children's Hospital of Pittsburgh who recently treated one of my dad's friends kids (15 yr old boy with a lot of similarities to Alivia's blood work) and our Dr. had heard of the doctor (said that he was Nationally known) at Children's and said maybe we could get our second opinion from him if we wanted. So now we have to consider where we will go. We have about a month to decide and our doctor will make all the arrangements for us including sending all the info they already have on her. She is going to have another bone marrow biopsy and a lymph node biopsy anyway so maybe we will be getting it done in Pittsburgh (the Allen half of the family just got really excited that they might not be that far away for a little bit). We haven't decided but it would be nice to be in a hospital that is still near a lot of friends and family (since I grew up an hour from Pittsburgh)

So it was a long, long, nap-free day. She finally fell asleep on the way home but not for very long. While we were at the doctors we figured out one of the possible reasons she didn't sleep well...she has the beginnings of an ear infection. (getting anti-biotic tonight)

Pray requests...better sleep tonight (lack of sleep makes us all a little crazy) , ear infection to heal quickly, WBC's to continue to drop (if they continue to drop 9 thousand each week that would be amazing), and for the parasite test to come back positive. That would be the best diagnosis!

thanks for today....
Great salad and cutey card from Tina, Dwayne and Owen Lapp
Cards from Jerry and Peggy McGarvy, Bill and Anita Kennelly (and thoughtful gift), Frank and Carol Frederick, Nikki Lilly, Matt and Erica Aikens, Jill Piper, 2 cards for Alivia's nurses (thanks Marmie and Briana!!) Keep those coming. And sweet cards and a fun baby activity book from Eric, Stephanie, Mary, PJ and Sarah White (James' cousins....or second-cousins..) Also a letter from Jim and Jean McClements.

I am collecting nurse thank you cards and will give them next Thursday..so you have a week. I would rather this next week if you are planning on sending a card make it to the nurses and not us for a week. That would be so great. I want to shower them with affection since they were so amazing! Thanks everyone.