Friday, February 26, 2010

“There’s no business like SNOWbusiness!” Feb. 26, 2010

I’m only updating today because Sabrina told my mom she’s in dyer need of an update. So, Sabrina, this one’s going out to you! Muuuuuah!

I got a report from Dr. Escolar earlier this week. No real surprises there. It says that Sarai is very behind in her visual development/maturation, and we should start patching her right eye to strengthen her left. She will be evaluated by a vision therapist soon for early intervention and I guess that’s when we’ll learn more about how this patch business is going to go. We were supposed to have a meeting with the whole early intervention team, but it was cancelled because of “bad weather” (it was raining when they cancelled). When the meeting is rescheduled we’ll have the info from the vision person. So that’ll be good.

On the brighter side of the report, it says that Sarai’s expressive language is right on for her corrected age, and that her motor skills aren’t too far behind. Dr. Escolar would like us to go back in 3 months, but if we don’t have any major concerns, we’ll just wait for August when we see everyone again for a yearly check-up. So we’ll see.

We just got more snow than I’ve seen in years! 30+ inches I believe. The snow was so thick and heavy, the guy who comes to plow couldn’t get the plow up the driveway. So it took Adam, our landlord, and two other guys 4 HOURS to dig us out! And now poor, tired Adam is taking care of Sarai so I can sit and update the blog… the things we do for Sabrina. : )

As you can see, Sarai built her first snowman today! Too bad we couldn’t get a big smile on her, but she is NOT a fan of that snowsuit!

Stay warm, lovies!

Wednesday, February 10, 2010

“Seeing is believing, and in my arms I see her…” Feb. 10

Got an email from Dr. K today… her hearing and vision tests are NORMAL! Yippee!! Dr. Escolar is at a conference for the week, but also sent me an e-mail today and said that she’ll call next week. I’m hoping she can offer some advice on what we can be doing to help develop her hearing and vision more. Everyday I’m playing with her with toys, lights, musical things, trying to get her to look, watch, listen. Maybe she’s got some tricks I don’t know about yet.

But I’m totally excited about this great news!!

I don’t know if I told you guys this, but I’m making my own baby food. Thanks to a book Coleen suggested, it’s been easy and kind of fun. After introducing Sarai to lots of things, I started mixing foods together and she seems to really like it. Today was broccoli and sweet potato. She’s doing great with solids… as evidenced by the scale!

Big storm here today! Sarai and I won’t be going out for a couple days.

Love to you all, thanks for all the prayers… again! Miracles are happening!

Tuesday, February 9, 2010

“What a long, strange trip it’s been…” Feb. 9, 2010

We had a crazy weekend for sure. We brought Sarai back to Duke on Friday for the hearing and vision tests. I thought that morning was going to be just awful since she couldn’t eat after 6:30am, but she was actually wonderful! She had to be sedated for both tests, but the medication was oral, she sucked it right down and fell quickly asleep. They were able to do both tests without a problem, and I’m still waiting (on pins and needles) for the results. I could have sworn I saw the tech wince at the screen, but I can’t be sure… what does that mean?? Adam thinks she must have seen that Sarai is an off-the-charts-genius and couldn’t believe her eyes. So, yeah, it’s probably that.

We headed out for home right after the test and got stuck in that huge snowstorm. North Carolina was fine, and we decided to take 81 to avoid DC and the coast in general. That didn’t make us immune though! Once we hit Virginia, we could hardly go more than 20 miles an hour. After about 8 hours driving, we decided to stay over in a no-tell-motel for the night. In the morning we went out for a quick breakfast. I had an interesting conversation with the waitress…

Me: How are the roads today?
Waitress: They were fine when I came eeeen. They’re doin’ a great job takin’ care of the roads. See we have a republican governor now, so things are gettin’a lot better.

Well thank goodness! ; ) We decided to give it another shot and see how things went. Again, we couldn’t go more than 20 miles an hour, but as soon as we hit Pennsylvania, it was smooth sailing! (And I might add that Pennsylvania’s governor is a democrat… I’m just saying.)

All in all, we were driving for 17 hours, what a trip!

We had just enough time to put chili in the crock pot before Katie and Steve were here to watch the Superbowl. We had tons of food and had a great time visiting. They even helped paint Sarai’s room, which is all done now and pretty much ready to go. We’re still settling in, but the new place is looking great and feeling a lot like home!

Just waiting on a phone call. Hopefully I’ll hear something soon.

Thursday, February 4, 2010

"She's got a light around her, and everywhere she goes, a million dreams of love surround her, everywhere."

Sooooooooooooo, we met with Dr. Escolar today, for an almost 6 hour appointment. After an extensive evaluation of Sarai with her team, and then reviewing the MRI images and report (she sees the MRI after the exam so she's not "tainted" by the MRI results)she told us some great news. The MRI report shows, and I quote, "The previously noted preiventricular cysts have resolved." What?!?! Huh?!?! Are you serious?!?! No one ever even said that was possible!!!! Ding, dong the cysts are gone!! I was in such a stupor, I didn't ask if she thinks it's because of the cord blood. She did say that in mild cases, this can happen. Her previous MRI and head ultrasound both stated that her PVL was extensive, but Dr. Escolar wasn't as sure it was as severe as they first doctors said. Whatever the case, she said this is great news!

We got a lot of information today, I'll try to remember it all. Dr. Escolar said that she's not very concerned with Sarai's muscle tone or her social development. She is a little behind, and we knew that. Her adjusted age is 5 months, but she's neurologically and physically more like a 4 month old, not too bad.

Not that we're totally out of the woods. Her MRI still isn't totally normal, but it is improved. The area around her ventricles is still developing, and she has less myelin than would be expected for her age(which is why she seems more like a 4 month old), but she is myelinating. Her main concern for now is her vision and hearing. She said that it was VERY important to test her as soon as possible to see if the concerns with vision and hearing are maturity related, or an actual result of what's going on in her brain. If it's brain damage causing difficulties, we've got to teach her to compensate as soon as possible. If it's maturity or strength related, we've got to stimulate her as much as possible to get her caught up. So, she got us appointments at Duke for tomorrow to get these tests taken care of. She's going to have to be sedated, which is something we were really trying to avoid, but they're important tests, so I'm giving in.

Needless to say, after waking up at 4:30am, packing up the car, getting all ready to go... we're back at Cindy and Justin's for another night! We'll head out tomorrow after the appointment, but we're going to have to take it easy. My cousin, Amy, is reporting that they're going to get a TON of snow in the DC area. Man! Can I get a travel break?!

Wish us luck tomorrow! Thank you for all your prayers! Great work team!!

Tuesday, February 2, 2010

“Singin': "Don't worry 'bout a thing, 'Cause every little thing is gonna be all right." Feb. 2

Infusion #2: Complete!

We made our way to the hospital early this morning. The nurse we had yesterday burst into the room where Sarai was having her blood pressure taken and said, “I was trying to get her again today but SHE [points to today’s nurse] stole her from me!” Sorry sister, finder keepers. Then they chatted about how adorable Sarai is… I just never get sick of hearing that.

Colleen, a nurse practitioner, asked several questions about Sarai and her development. She was impressed with how well she’s doing. When Dr. K came in for the infusion, she was also really happy with her progress.

Dr. K had a little bit of a harder time getting a vein today. She found one on the second try, and things went smoothly from there. Today they had the music therapist come in with them. He played his guitar and sang through the whole procedure. He even got me in on a chorus of Twinkle, Twinkle! He sang mostly classic lullabies, but also did a little Beatles.

Sarai is suddenly famous for the onesies that Mim makes her. Yesterday, after everyone saw the, “Stem cells… may I have a second helping please?” shirt, people were just stopping us in the hall asking, “What’s her shirt say today??” Her shirt today said, “When I grow up I want to be just like Dr. K!” One nurse replied, “That’s some big shoes to fill!” and Dr. K said, “I guess I’ll have to be on my best behavior!” She really is an inspiring woman.

We’ve taped bits and pieces of our trip, so in a few days hopefully we’ll post it on youtube. We even taped the infusion, but I don’t think they want the procedure posted up on the internet. But if you happen to come over for a visit, we can share at home!

Tomorrow night is the MRI, at 8:15pm. So I’ll probably not post anything until Thursday or Friday. Thank you all for checking in! You’re the best!

Monday, February 1, 2010

"On the wings of love, only the two of us together flying high..." Feb. 1

Why that title? Because we're sitting here watching the bachelor. Ugh, this guys makes me nuts (and not in a good way).

But you're probably not reading this to find out about my personal feelings toward to bachelor, are you? We had one appointment today, they just did a weight check and drew blood... about 5 vials of it! It was over pretty quickly, and Sarai was calmed down just a minute after it was over.

Tomorrow we head in to the hospital pretty early, registration is at 10.

They weighed Sarai today and in the past 6 weeks, she's gained 2 lbs! She's just over 13 lbs. I can't believe it!

The back roads are getting better around here, but schools are still closed tomorrow. We made it to a mall today before our apointment and tried some 5 Guys Burgers! I thought they were pretty good, Adam was NOT impressed.

Infusion tomorrow!