Sunday, January 31, 2010

“And since we’ve no place to go… let it snow, let it snow, let it snow!” Jan. 31

Greetings from the south! If you remember, on our last trip to Duke, we left on our one year anniversary. This time we left on my birthday!

We made it to North Carolina safe and sound. I’ve been talking with Cindy for the past couple of days about the storm they were supposed to get down here this weekend, and yesterday after she told me they declared a state of emergency in NC, I ran out and rented an SUV with 4-wheel drive… and thank goodness! I’m pretty sure we’d be somewhere on the side of the road in south Jersey if I hadn’t done that.

Sarai got to meet her new cousin Kingston (1 month old tomorrow!) at Amy and Kevin’s. He’s beautiful! We had a delicious breakfast, and yummy birthday cupcakes, and we’re now in NC. Just had some goulash, some birthday cake (can you believe what great hosts we have?!) and we’re getting settled in.

We have appointments for the next 4 days. Tomorrow is just a check-up, the infusion is on Tuesday. MRI on Wednesday night, then we meet with Dr. Escolar on Thursday. Here goes nothin’!

Monday, January 25, 2010

“Well we’re movin’ on up, to the east side!” Jan. 25, 2010

We’re SO outta there! And getting all settled in to our new place! We had so many people help us out in the past week, it’s amazing. Christin, Beth and our downstairs neighbors all watched Sarai so we could pack. My mom came down for the weekend. Vanessa’s husband came to help with the move, PLUS 3 of Adam’s nephews and two of their friends, AND Sean, a friend of Adam’s from the guard. Whew! We had plenty of hands! Then (Titi) Michy and (Tio) Swel came Sunday so we could clean out the old place for good and get a few more things all taken care of. Thank you so much to all of our wonderful friends and family!

(I’ve had a couple people ask already, and just in case you needed it, our mailing address is the same: PO Box 372)

So everything is settling in nicely. We’ve got to paint Sarai’s room before anything gets set up in there, and that will have to wait until at least after we get back from Duke. (Right now the room is a yellow that offends me.) Anyone with painting advice let me know. I want it to be done right, and I’m a little clueless about painting.

So we leave Saturday for Duke! Stem cells, here we come! (Keep your fingers crossed, say some Hail Mary’s, or whatever you do, because if we have another setback, I won’t be responsible for all the f-bombs dropped in the next blog!) If you live in our area and have a minute to stop by and feed the cats once next week, let me know. We lost our friendly neighbors in the move.

Sarai started blowing bubbles this weekend while my mom was watching her! She’s doing a GREAT job holding her head up when we pull her to sit, and is doing SO much better tracking toys. Still not reaching for them, but she is reaching for our faces, so hopefully toys aren’t far off. Eating from a spoon is going really well too. She is really starting to like being on her back, we play “Where’s the baby?” and she thinks it’s a riot. I cover her with a little blanket she got from her GG, and when I uncover her (or she uncovers herself) she just laughs and coos. We’re finally getting to where she doesn’t have to be held all the time. Finally! I’m kind of glad the doctors at Duke will see her now instead of 6 weeks ago, because she’s really changed so much in the past 6 weeks. I can’t wait to see what they say!

Friday, January 15, 2010

“A poi-son, could develop a bad, BAD, cooooooooooold!” Jan. 15, 2010

Well lovies, I’m happy to say that Sarai is feeling MUCH better and has been cleared for travel. At her last doctor’s appointment, she said she looks wonderful! We’ll be heading out to Duke the first week in February.

Sarai’s been eating some foods and that’s been fun and interesting. So far the only thing she seems really interested in is pears. She practically dives on the spoon for pears, but everything else is difficult. And the other day when I was on the phone with Katie, she laughed for the first time! Full on, belly-giggle-laughed! It was the most adorable thing! And she really is cooing so much now it’s crazy. All she wants to do is gab. Typical girl!

She went to see a neuro ophthalmologist and he didn’t have much to offer. Just what we keep hearing; She’s a preemie, her vision is just immature and will catch up in the next few months to a year. We’re seeing big changes in her lately though. She’s been much more calm, seems to enjoy being on the floor more… she just seems a little more independent. Her physical therapist, Vanessa, said, “She is getting much more mature!” Sarai is usually a total stinker for Vanessa, but was wonderful last week! Let’s hope she keeps up the good work.

So, since we don’t have enough on our plate, I figured… now’s a good time to move, right??!! So, we’re moving. (The tree falling on our house really did me in.) We found an adorable, downstairs of a house, right down the street. We’ll have a washer and dryer!! And a basement! And two bathrooms!! (Plus, they probably don’t have squirrels running around in the ceiling, and that’s always a bonus.) So, we’re outta here… and next weekend! So, if you’ve got nothing else to do and would like to carry a box or two… or a refrigerator (yeah, that’s going to be ugly)… give us a call!

We move next weekend, then head to Duke the weekend after. Aye yay yay. Never a dull moment!

Saturday, January 9, 2010

“She don’t do nothin’ but kiss n’hug me, my babe…” Jan. 8

Nothing really new to report, but I posted a new video of Sarai on youtube. So if you’ve got about 4 minutes and want to check her out, go to…

(Why can't I figure out how to get the video's embedded here??)
Love to you all, have a nice weekend!

Thursday, January 7, 2010

“A spoon full of sugar helps the medicine go down, in the most delightful way!” Jan. 7, 2010

G’day, or should I say, G-d’evening! I wanted to let you all know that Sarai is doing much better. We’re giving her breathing treatments every 4 hours, and her coughing has gotten much better. She went to the doctor yesterday and hadn’t lost any weight since Saturday, which is amazing because it’s been really hard to get her to eat. Usually she’ll take breastmilk, formula, prune juice… you name it! But lately all she’ll do is nurse, and will only take an ounce or two at a time (4 ounces is what she usually takes). Tonight though she did actually drink 4 oz of formula, so now I really feel like she’s on the mend!

Because she hasn’t been eating as much, she hasn’t been going to the bathroom regularly. She’s only gone #2 once in the past week, and let me tell you, it was like a regulation hockey puck! Seriously, I’m sending it down to the NY Rangers and they’re going to use it in the next match.

You may have noticed in pictures, or if you’ve seen her lately, that beautiful black full head of hair is finally thinning out and turning a much lighter brown. I’d call her hairstyle a backwards mullet…. Business out back, party up front!

She has an appointment with the neuro-ophthalmologist and a hearing screaning next week, not sure if she’ll be able to make those appointments or if we’ll have to cancel. Her next appointment with the pediatrician is on Monday, so I imagine she’ll tell me if we can go to those appointments, and maybe give an idea of when we can reschedule our trip to Duke. I’m hoping for the end of the month or the first week in February.

Saturday, January 2, 2010

I give up, there are NO lyrics to describe this situation!!

So, some of you are probably thinking we’re packing up the car and getting ready for our trip south… but… you’re not going to believe this…. we had to cancel our trip to Duke again. : (

Sarai had a cough a couple of weeks ago, I took her to the doctor and he said, “Cough? Runny nose? No big deal!” So I didn’t think much of it when she got another little cough and runny nose, except it didn’t get better so quickly. We brought her to the doctor last Monday and we were waved off again, just a little cough, clear ears and lungs, no big deal. Then Wednesday and Thursday, Sarai was having a terrible time eating and I knew we were in trouble. I brought her to the same doctor Friday that we saw Monday. The doctor decided to do a test for RSV. RSV is a very common respiratory virus that almost all kids get, but it’s very dangerous for babies with compromised respiratory systems and for preemies especially. We’ve been warned about it since she was in the NICU. Actually, they offer a vaccination for it for babies that qualify, and Sarai has been vaccinated. So the doctor, thinking there’s NO WAY she could have RSV because of the vaccination, checked her anyway, and sure enough, it’s RSV. She said in all her years practicing, she’s never seen a kid get RSV that was vaccinated.

The doctor was in a small panic. She said we had a 50/50 shot of going back to the hospital and said to watch her “extremely” closely because “this can turn bad very quickly.” I stayed up with her most of the night last night, basically trying to feed her constantly. She lost half a pound in the past couple days, but over night didn’t lose anything, so she’s holding her own. The doctor thinks that the vaccine is protecting her, that she’d be a lot more sick if she hadn’t gotten it. She also said that this could last a month. We’re giving her breathing treatments and smothering her with kisses. She is so uncomfortable and her cough just tears at your heart. But, being the tough little peanut she is, she’ll come through!

I thought our luck would be changing for the new year!? What the…. ??

If you didn’t hear about this on facebook, I’d also like to share that a tree fell on our house last Tuesday. Can you believe it?? Seriously? Seriously. It sounded like an earthquake. No one was hurt, and the damage was fixed by the evening. But, come on!! We rent thank goodness, so there’s the bright side.

With the streak of luck I’m having, I’m afraid I’m going to start losing friends. I’m going to be sitting at a bar with my girls and a safe will drop out of the sky and land on someone!

In happier news, my cousin Amy and her husband Kevin had a beautiful baby boy, Kingston, on New Year’s Day!! Congratulations guys! As soon as the universe stops conspiring against us, we hope we’ll get to meet him on our way to Duke! ; )

Keep your fingers crossed for Sarai. She’s got a rough few weeks ahead of her.

Happy New Year lovies!