“On the day that you were born the angels got together…”

Good evening everyone! We had a really fun friend-and-family filled weekend. It was Sarai’s friend Alora’s first birthday! We had a ball, and it was great to bring Sarai and show her off while she was on her best behavior. We also headed out to Jersey for dinner with the Losier’s, and Sarai got to spend some time wit her great-grandma. Great friends, great family, great food, great times!

Sarai’s speech therapist has officially confirmed it…. She’s cooing!! I swear, I almost cried! She doesn’t do it often, but she’s definitely there! I’m so excited!

Physical therapy just started last week. She’ll get that once a week from now on. I really like this therapist, as I really like all of them actually. Everyone I know who’s had experience with Early Intervention has sworn what a great program it is. And so far we’ve had a great experience too. After her first meeting with us, the PT said Sarai seems to be in really good shape, good head control, moving around a lot. She gave me a couple strategies for tummy-time and I’ve been doing them. She really only worked with Sarai for a few minutes because she took a lot of time to really get to know her history. Hopefully in the coming weeks we’ll get to know her a lot better.

Sarai had a pneumogram done the other day. They did this once in the hospital ages ago. It’s a test to look closely at her breathing. After the last one, they decided she needed to be on caffeine to help regulate her breathing. This one was to hopefully stop the caffeine she’s on. The test was a serious pain! She was hooked up to a machine and couldn’t move more than 6 ft. away from the machine for 17 hours! But the results were “almost perfect,” and she’s now off the caffeine. Yippee! Plus, we won’t have to see the pulmonologist again, as long as we don’t have any unforeseen problems. Whoo-hoo! One less doctor.

I have to say… when the caffeine was started, we were told that (although caffeine is a stimulant) it wouldn’t make her “wired” like it does to adults, that it would only stimulate the part of her brain responsible for breathing. She used to take her caffeine at 5pm. When she came home from the hospital, and after several sleepless nights, we moved the caffeine (gradually) to mornings, and then we had mostly sleepless days. And that’s ok with me, but I’ve always thought she should sleep more for a newborn. Well, after only a couple days off the caffeine, I notice a HUGE difference in her sleeping patterns. She’s taken huge naps during the past couple days, and has been a LOT less fussy. Now let me tell you about her usual fussiness… my VERY baby-friendly Christin came to visit, and Sarai was her usual self; Christin couldn’t put her down for a second before she was crying like crazy. Even Christin had to say, “This is intense!” I had to say, “This is what my days are like!” But really, the last couple days, she’s been so much less fussy. I mean, it’s too soon to tell, but I see a notable difference since the medication has stopped.

Adam and I were just saying the other day, we’re really noticing some changes in her. She’s holding her head so much better, pushing up on her arms sometimes. She’s putting her hands in her mouth more, and when I put a ring in her hand, she’ll hold on to it for a while. With a TINY bit of help, we’ll guide the ring to her mouth and she’ll hold the ring in her mouth while she chomps away on it. Good exploring!!

Oh, I almost forgot!!! We have our date to go back to Duke! Sarai will get her second, and last, infusion of her cord blood cells on December 15th. She will then see Dr. Escolar at UNC for another MRI on the 17th. I think we’ll also go back to see Dr. Escolar in March for a third and final MRI with them. Dr. Escolar is the doctor who told us that the cysts in Sarai’s brain aren’t on “main pathways,” and that looking in the next months will show how she’s using her brain and will give a better picture of what the future holds. Of course I’m hoping that that MRI’s will show regeneration of the myelin that’s dammaged/missing.

I’m so sorry this is going on and on… but I have to tell you that my darling husband got me a gift certificate for a MASSAGE! I’ve never had one and I just can’t wait!!