Happy Holidays!

This update is so overdue...I am so sorry. Im not even sure if my blog gets checked anymore since I have fallen so far behind ;(
Life at home is non stop. Im not sure if anyone is aware but I have a super bionic baby that requires no sleep...did you know that?  Night time is horrendous, and nap time is non existent. Ava will not nap, and will also not sleep through the night. I will say that I know she can because we have had 2 glorious nights since we have been home where she has slept through. But, other than those 2, we are up constantly through the night. We have decided to start the Ferber method but have a hard time starting, neither of us want to deal with the crying all night.  After a restless night, I spend my day trying to get her to nap. Sometimes hours will go by and Im still in her room rocking her, it is the absolute worst. On top of it, I now have Audrey home on break. The best is when Im in Ava's room trying to lower her into the crib, trying not to breathe, and Audrey is screaming "Mom! Why are you taking so long? Mom!! Im hungry! Are you almost done?!" Ava's eyes open, she starts to cry (and so do I), and then we're back to square 1. I don't know how Ava can sleep 6 hours a night, then take no nap all day?? Seriously, there is nothing more frustrating then her fighting sleep. So, my blog doesn't get updated because I rarely have 10 minutes to sit and concentrate. Sorry.
I will say that Ava's disposition is amazing! Thank goodness, because I would lose my mind if she cried all day. I have never known a baby that is so friendly and easy going, she never complains and is a total love. If it weren't for her sweetness, I would give her away to a different home. But under all her sweetness she has a wild side, and lives up to her name "rugrat".  Drew and I watch her in disbelief at the things she gets in to, her curiosity knows no bounds.  She is destructive, funny, silly, and a definite daredevil...all which makes her even cuter.

On a medical note, she is doing great!  Her clinic appointments are dwindling to once a week now and they have decided to run her T-cell engraftment test once every 2 weeks instead of weekly.  As Ava's lymphocytes are coming in, they are showing more and more of Audrey and less of her own. The past 5 weeks of results showed a move in the right direction. After the DLI was done 7 or so weeks ago, the test result showed 90% of Ava's own lymphocytes were making up her T-cells, this of course is not what we wanted. We were told that it was too soon after the DLI to tell and we would wait and re do the test each week. As the weeks went on, the percent dropped from 90% to 84% to 74% to 55% and the last one was 51%!! So, Audrey and Ava's lymphocytes are coexisting at the moment but are not bothering the blood as a whole, and Ava's own lymphocytes are going down each week (which means more of Audrey is being made). I am eager to see what the results will be after waiting 2 weeks, if they will continue to go down or if they slow down and level out...either way, Dr. Chen has said that this is wonderful and it is exactly what we had hoped for! The most amazing thing is her platelets have been over 300,000 for over a month now and reached 400,000 last week! It was her lack of platelets that started this mess and now she has more than me (I had my blood work done and my platelets were only 320,000)!!  All other blood test results are where they should be at this point in the game... white cells, red cells, ANC, liver function, kidney function, all look great. We are so thankful.

Ava still doesn't leave the house, and is not around lots of people (except for clinic visits). Last week was rough, Audrey got sick and was home from school with a fever for 5 days! I was freaking out! The first 2 days I tried my best to separate them, had them on different levels of the house, air purifiers running, disinfecting everything Audrey touched...I was running around like crazy. That obviously didn't last long. Anyone with a 1 yr old and 5 yr old knows you can't leave either one alone for long. They both needed me and I learned that it is physically and mentally impossible to separate. Day 3, 4 and 5 were a little different, both girls shared toys, ate in the kitchen together, watched tv, and breathed the same air...I didn't care. I washed hands constantly and hoped for the best. Audrey is all better and Ava never got it. Now, either I did a phenomenal job of keeping everyone germ free, or it wasn't contagious in the first place...who knows.
We made it through the holidays this year. The kids got so much stuff! Christmas and 8 nights of Hanukkah are enough already! We of course did Hanukkah with the kids (tonight was the last night, and thank goodness because I ran out of presents) and then did X-mas with my mom and Mike. It was nice visiting, eating, and watching the kids open gifts. We had a tree this year (our 1st one ever) thanks to my girlfriends who snuck in and put one up for me to get me in the holiday spirit. It was so beautiful and made my living room perfect. The kids loved it and even Drew admitted he liked it...the grinch he is. I don't know if we will ever have one again, but it was perfect for this year.

never too old for footie jammies!!

 

 Ava's cell phone

Im trying to think of everything, but I know Im forgetting to mention stuff. Basically I just wanted to check in, give an update, and wish everyone a happy holiday! My New Years resolution is to get Ava on a sleep schedule, to keep my blog going (even though I have nothing interesting to write about), and to start reading again!  I need some "me" time at the end of the day!  I think I will talk to Ava about that tomorrow.