Countdown T-20
This time last year, we were still waiting for word from the hospital when the donor would be available. Those days, and the whole year, crawled on second by agonizing second. This year, the seconds are also creeping along, but only because March 15th cannot come soon enough.
From now until March 15th, I have asked several of the doctors and nurses who took care of her since she was diagnosed to not only write a comment, but to actually contribute to the blog. I hope you will stay tuned for that… favorite nurse is up first.
There are new photos of Haley in the photo gallery, plus snapshots during the time she was in the hospital, our stay in New York with Lori and family, and a few extras. So take a look! more are on the way.
Haley woke up with the same rash on her face that I saw last Fourth of July, the rash that started all of her skin problems. Luckily, it’s nothing to be gravely concerned about, as long as one of her three medicated creams do the trick. She hates having cream put on, even if you do it the most gentle, loving way. Which is why i always whisper, “I know, I know, it’s ok” as I’m doing it (seems to calm her down, or at least distract her). But today for some reason I must not have been saying anything, because the next thing I know, Haley’s saying to me, “I know, I know, i’ts OK.”
For those who have never met her (and even those who have, but haven’t in a while), from the moment she wakes up to the moment she goes to sleep, Haley is the giggliest, wiggliest, happiest (read: easiest) kid in the world. Except when she gets her lotion on, and when she has to eat. I’ve tried every trick in the book. It’s hard to fight the effects of the Tacrolimus, which leave her wholly nauseous and probably with little appetite since it’s supposed to make your food taste metallic or something unpleasant like that. She’ll fight tooth and nail when you try to feed her. Though, once you get the first spoon in, as long as it’s soup with some rice or beans in it, she’ll eat more. The goal of course is to keep her weight high enough so they don’t put in a GI tube. Our nutritionist appointment isn’t until March 20th. So until then, we’re trying every possible food we can. If anyone has had experience with similar issues, particularly with food aversions by way of Tacrolimus, please leave a comment!
Dear Haley,
— she says this is cooler than a grin)
We haven’t seen you in a while — we miss you!! We are so excited to hear that things are going well and also that you are talking!! We can’t wait to talk with you. We will stay tuned to find out how things are going.
We love you!
Norm, Lindsay and Tamar
(Tamar sends a
February 25th, 2008 | #
Haley,
So glad you are back and getting stronger and stronger! What a difference a year makes! Can’t wait for more news little girl, I have been thinking about you!
Seema
February 25th, 2008 | #
Dear Haley & family,
I was just thinking yesterday that March is coming and what an important month it will be for you. I’ve missed the regular updates, and am so glad to back in the Giggle! I am so looking forward to March happiness, and March saneness, and March healthiness. You’ve had enough March madness. All of us love all of you,
Matthew, Leon & Jen
February 25th, 2008 | #
Haley,
So happy to hear of all your progress. You are tough like your mommy and I cant wait to watch you grow up and accomplish eveything that your heart desires.
David Price
February 25th, 2008 | #
Hurray! News from Haley and her Amazing Mommy! Keep us posted. We really do need to have a party some day soon. When your mom and dad say it’s okay. I would love to meet and greet the other wonderful people on this blog. Hi, gang! I’ve missed ya!
Greetings from Charlotte, NC Cristina
February 25th, 2008 | #
Hi Haley and Co,
We are so happy that you’re doing well and are counting down with you! Can’t wait to see you at one of Uncle Pretty and Ami’s games very soon. I might even remember to bring a dress of mine for Anna to dress up in so she has a good time too!
Lots of love,
Mimi and Ami
February 26th, 2008 | #
From
to 
! I can’t believe the countdown in here, way to go Haley baby! Has it been nearly a year since I’ve last seen you? AWESOME!!!
February 26th, 2008 | #
Wow! The year mark – bet it’s a little crazy reliving this time … but I’m so glad to hear things are generally better. We can’t wait to see Haley out and about more and play with you guys! XO The Fishers
February 26th, 2008 | #
Dearest Haley and your terrific Mommy, Daddy and sister Anna,
We are so happy that it is almost a year and B”H are doing so well.
We will be in Israel (right near The Hyman’s) and will continue to pray every day that you will finally be able to enjoy a wonderful life only filled with normal kid stuff to worry about.
We’ll be checking the blog all the time to keep up with the news.
Love to everyone,
Sheila & Sherman:lol:
February 28th, 2008 | #