Saturday, October 31, 2009

“Cause this is thriller! Thriller night!” Oct. 31

I hope you all had a spooky, candy-filled Halloween! In our house, Halloween came and went, and we’d never even know. Up here in our apartment in the woods, we’ve never had a single trick or treater. But I did go to school on Friday to meet my class and hang for a little while at their party. I got to see lots of co-workers, I really miss everyone! It is going to be SO hard to go back to work, but I kind of miss being in that “loop,” you know? My class seems nice. They were so cute in their little costumes. Tuesday is Election Day, and the kids will be off, but the teachers are working. I think I’ll stop by and crash lunch, bring Sarai to meet the Scotchtown crew!

Like I told you in the last post, Sarai seems so much more calm since the caffeine has stopped. Her physical therapist came on Friday, her second time, and she was just shocked at how different Sarai was. She said, over and over, “I’m amazed!” She said Sarai was TOTALLY socially appropriate. She was smiling, cooing, letting Vanessa (the PT) hold her and stretch her, completely different from last week. She was laying on her back and almost rolled over more than once! Vanessa couldn’t believe it! When she left she said, “I feel like I should hug you! This is so great!” Of course this is just one day, and she said she’ll really need to work with her through November before she has a real, clinical opinion about Sarai’s progress, but I’m encouraged! She also said that we should focus on stretching and massaging Sarai’s arms, they’re more tight than her legs. So I’ve been doing little bicep curls, shoulder raises and arm circles while we make donuts. She doesn’t even notice!

Vanessa has worked with several babies who were on caffeine and has seen changes when they were taken off of it, but she said she’s never seen anything so dramatic as this. But she also said, and of course it’s true, drugs have different side effects for everyone, maybe she just didn’t tolerate it very well.

Sarai is still sleeping better, during the day and at night. The past couple nights she’s been in bed around 9 or 9:30, waking up once to eat and going right back to sleep. She really seems to understand, when it’s dark out, it’s bedtime! (Of course as I write this, she starts crying!)

Next week we head to Syracuse for the weekend! Yippee! Friday morning I have my first cord blood presentation. I’m meeting with a few people (small group) from the Maternal-Infant Services Network of Orange, Ulster and Sullivan Counties. I put together a PowerPoint that I think really tells our journey, and gives lots of facts about cord blood banking. Wish me luck!

Sarai has a new cousin, Logan. Congratulations Eric and Tammie! And tomorrow is Katie’s birthday! Happy birthday little sister!! Sarai sends muchos besos!

Sunday, October 25, 2009

“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!!

Thursday, October 15, 2009

“Without a noise, without my pride, I reach out from the inside…”

Posted Oct 15, 2009 8:50pm
So, it’s mid-October… and it’s SNOWING!! I can’t believe it! I’m not ready for this!

Poor Princess Sarai has had a couple rough days with doctor’s appointments. On Tuesday, she had a couple shots. (She’s on a spread out schedule, so she goes each month gets 2 shots at a time, 3 at the MOST.) She had a couple shots last month and didn’t have a hard time, so I didn’t think much of this appointment. When we got into the office, there was a little girl across the hall from us, probably about 2 years old. She was crying, saying over and over, “Mom… mom… mom.” Then the doctor walks into the room and closes the door behind him and the girl starts shouting, “No.. no,… NO! NO! NO!” It was heartbreaking! I don’t know how I’ll handle this when Sarai is talking and can protest like that.

Actually getting the shots wasn’t too bad, but a few hours later she woke up from a nap SCREAMING. She didn’t have a fever or anything, and the injection site wasn’t red or swollen. We tried to make donuts together, no dice. That never happens! But after some Tylenol, she was much better and slept well that night. We’ll know to give the Tylenol before the appointment next month.

THEN, on Wednesday she had an ophthalmology appointment. This appointment was nasty! They stuck this medieval torture device in Sarai’s eye to hold it wide open. Then they have me put her on my lap so I can restrain her arms and body while she kicks and screams. Aye, my heart was aching! They were checking her for retinopathy of prematurity – where the retinal blood vessels are disorganized. In most cases this can fix itself, and in extreme cases can lead to blindness. The doctor said her vessels are all formed and totally fine! We’ll just have to follow up in a year because she’s at risk for nearsightedness. No problem!

Sarai hasn’t been weighed in a few weeks, but I’m sure she’s well over 8 lbs. now. We borrowed a carseat insert from Beth that we’ve been using since she came home from the hospital, it gave her a lot of extra support, and she’s finally outgrown that and now uses the regular insert for newborns. I think she’s more comfortable in her seat.

Last night Sarai only woke up ONCE to eat! We both basically slept from 10-8am! But for some reason, the extra sleep only makes me sleepier today. We had a nice nap this afternoon too. What will I do with all this sleep?!

Adam is home tonight. It’s so nice when he’s here. And he’s SO good! He works all the time, comes home, sleeps for 3, 4 hours at the most, then wakes up to give me a “break”! What a doll he is! I try to get him to sleep more, but he just won’t. He’s bouncing Sarai right now trying to get her to sleep. I’m so lucky to have my little family!

We had a play-date with all the Loftus kids this morning! Kate’s got 3 kids under 3, is looking fabulous and doing a wonderful job! She’s like super-mom!

Has anyone else tried to pumpkin latte from Dunkin Donuts? It’s fabulous!

Monday, October 12, 2009

“You my… brown eyed girl! Do you remember when, we used to sing…”

Posted Oct 12, 2009 11:15am
Happy Columbus Day weekend! I don’t know about you, but we had some absolutely perfect fall days down here. Cool, sunny, falling leaves… just beautiful! We took the opportunity to take a couple pictures, I hope you enjoy them! (You might notice I chopped my hair off! I love it!) Sarai is resting right now doing her best Maggie Simpson impersonation (“[suck, suck, suck] pause [suck, suck, suck] pause”), giving me a quick second to update the blog!

We had a pretty easy going week last week, this week will be a little more busy. In addition to our regular early intervention visits from the speech therapist and massage therapist, physical therapy will start and the service coordinator from early intervention is coming by to go over paperwork. Plus we have a doctor’s appointment for shots (OUCH!) and an opthmology appointment. THEN, I’m trying to squeeze in a couple playdates at the end of the week. Whew!

The second appointment with the massage therapist didn’t go too great last week. Sarai has a tough time being in a quiet, alert state on her back long enough to tolerate it longer than a minute. I’ve started to get a little worried about this. I asked the therapist about it, the irritability can be a sign of Cerebral Palsy, and she kind of shrugged and told me I should ask the pediatrician about it. Humph. Sarai isn’t an “easy” baby. So far, she’s not a baby that you can just put down and she’ll be happy. We have to hold her almost constantly, and I’ve said this a million times, but thank GOODNESS for her Moby Wrap! So I’m worried. I sort of look at every little move she makes and think, “Is that normal?! Do other babies do that?! Do other babies look like that?!” It’s kind of driving me crazy. The therapist also said that she sees a lot of GREAT things about Sarai; She holds her head in line with her body, she has good head control, her hands aren’t fisted, she alternates legs when kicking. We decided we’ll skip massage for a week and give her an extra week to grow, and I’m working on massaging her while I’m nursing. That’s going really well. We’ve just got to get her comfortable being on her back!

I’m trying to put a video together of Sarai so you can see her and what she’s up to. I’ll post it on youtube when it’s finished, so stay tuned!

I had such a nice dinner out with friends from work on Friday. Then after dinner, Adam, Sarai and I headed to Brooklyn to spend some time with family. Unfortunately the Yankee’s won their game on Friday, so the Tirado-Yankee-Fans had a ball with that and the Tirado-Mets-Fans just sat with blank stares. But, other than that, it was a nice evening!

Have a wonderful Columbus Day! I hope you’re enjoying a day off!

Sunday, October 4, 2009

“I know you, I walked with you once upon a dream…”

Posted Oct 4, 2009 6:07pm
Hello friends!

I hope you all had a nice weekend! Adam had drills from Thurs-Sunday, but Mom and Katie came down to look at a wedding dress for Katie, so that worked out perfectly. We went to Connecticut to see the dress, so another visit to a new state for Sarai. And, again, she was a perfect traveler!

Sarai had her first visit with the massage therapist last week. What the therapist does is model on a doll, and I actually massage Sarai. However, Sarai has been a little tough the last few days, so we didn’t actually get to do any massage on her. The therapist modeled on a doll, walked me through all the steps, and now I’m practicing until Wednesday when she comes again. Each section of the massage begins with me rubbing my hands together, showing her my palms and asking her permission to massage by saying, “I’m going to massage your legs now, ok?” Geez! How far we’ve gotten from the days of, “You’ll do it because I’m your mother and I told you so!” I’m asking my 3 month old daughter for permission to massage her?! Ok, I’ll roll with it.

I think Sarai is in a growth spurt, this would be the second one since she got home. Basically, she’s been crying like CRAZY when she’s awake, and eating like a monster. (Saturday night she ate for almost 4 hours straight! It was the only thing to get her to stop crying.) Last time this lasted 4 days, and today is the 4th day. She was much better today, and hopefully will be back to her smiley-self tomorrow.

Sarai will be 3 months old in two days! I can’t believe it. Her adjusted age is 1 month. She’s expected to be behaving like a 1 month old, and she’s about there. We do stretches with her 3-5X a day. I’ve noticed she’s a LOT more loose than she used to be, and not just when I’m trying to stretch her. Her arms and legs move easily, both when she’s moving them on her own and when I move her. When I hold her in a standing position, she puts weight on both her legs, and when I move her forward, she takes big steps (stepping reflex). She grasps my hair and sometimes necklaces I wear. When she lays on my chest, she can push herself up with her arms and hold her head for a few seconds. She loves to look around and see what’s going on. She seems to finally have her nights and days straightened out! She still wakes up about every 3 hours to eat, but at night goes right back to sleep. What a relief! We may have heard some “cooing” sounds this weekend, but I’m still holding out for a coo that’s undeniable!

My friend Carmen just had a beautiful baby boy, Gabriel, just over a week ago! Congratulations Carmen! And Kate L just had a beautiful baby girl, Emily, on Friday! Congratulations Kate! Sarai is so lucky to have so many friends!