Wednesday, April 28, 2010

“Cause she knew what she was doin’ when she told me to walk this way!”

We talked the talk and walked the walk! And with your help, we raised (new total just in today!)…. $1010!! Great job team! You guys are the best! It rained and was miserable, but my friend Lindi (another NICU mom) met me with her daughter Kadynce and we all walked together. Thank goodness mom was visiting, so she got to stay home and warm and get some special Mim-and-Sarai snuggles. Ain’t that the life!

Sarai started the Sabril over the weekend (that’s the new drug that can cause vision damage). Since starting it, I don’t think she’s had a single spasm (and she was probably having up to 20 a day just before that). I joined a group on facebook for parents with kids who had infantile spasms and found a few families who said Sabril was a miracle drug for their children and that today they’re doing really well. So that’s encouraging!

We’re still not seeing much improvement with Sarai’s vision, try as we might. But she is exploring with her hands like crazy! She has these little koosh-type balls that she just can’t get enough of. And her Baby Einstein piano? The kid thinks she’s freakin’ Mozart these days! Prop her up in front of it and she’s entertained for ½ and hour! Next thing you know she’s going to want piano lessons. Ugh. : )

Sarai had an evaluation for occupational therapy this week and of course she qualifies. I’m not sure what they’ll recommend yet, but it will probably bring her early intervention services up to 8/week. Yikes. It was good to see her doing some cool stuff with the evaluator; bringing her hands together, holding toys with both hands, reaching for her flashlight, stuff I see her do all the time but it’s been so gradual, it was nice to have someone new say, “OH! Look at her go! She’s doing great!” Moments of greatness Vanessa says. That’s what she was having!

Thursday, April 22, 2010

“There is beauty in the world, so much beauty in the world!”

Thank you to everyone who’s donated to the March for Babies walk! Sounds like the link I posted didn’t work too great, so IF you’re still interested, you might want to try this one…

My friend Lindi (a NICU mom/friend of mine) and I both signed up under the Tough Little Peanut team, and we’ve far surpassed our goal! Truthfully, we owe Sarai’s life to research that the March of Dimes supports, this is such a worthy cause. I even attended a “Sweatin’ to Broadway” night at the gym that was a fundraiser for the walk. Thanks for fun and a good workout Stephanie! I’m really enjoying being involved.

We had the appointment with the optometrist yesterday and that was… um…. disappointing. He said, “Well, Sarai is still really young. Let’s give her another 3-4 months and maybe we’ll know a lot more about her vision then.” Really? Really??!! I’ve been told to wait 3-4 months since the day she came home from the hospital! If I’ve learned anything through all of this, it’s that doctors are no where near as good as the ones on Grey’s Anatomy. The ones on Grey’s don’t stop until they know what’s wrong and know how to treat it. They never, ever, say, “Let’s wait a couple episodes and see how you do.” There is an answer at the end of every hour. Somebody call McDreamy for me, we need him.

It seems that lowering the ACTH has brought the spasms back. We saw Dr. James today (who has been wonderful) and he wants to start Sarai on Sabril, one of the only other drugs used to treat infantile spasms. It is known to be pretty effective and with a lot less side effects, HOWEVER, 1 in 3 people/children have permanent retinal damage. They can have blurry vision or tunnel vision. He feels that her vision is already compromised, and letting the spasms continue would just be, well, bad. I actually know two moms whose kids are on Sabril and both tell me that their children were 100x happier and saw very quick results. So I’m sticking with that, praying that we’ll be the 2 out of 3 without the vision loss.

Kelle Hampton, my new hero, wrote a blog about devoting her day to being in “Italy” with her girls (if you read the Welcome to Holland poem, you know what I mean). So I’ve been trying to just have fun, dance and sing with Sarai. I gave her her first pedicure the other day; bright pink with white polka dots! I laugh every time I see her little piggies! We’ve had a whirlwind of therapies and doctors appointments this week, but we’ve spent some good times in Italy.

Sunday, April 18, 2010

March for Babies

Hello lovies.

Adam and I decided we really need to get out there and do the March for Babies this year. It's a good cause that, of course, hits close to home. If you can and would like to sponsor us, we'd really appreciate it! The march is only a week away on Apri 24th! A link to our team page is here.

If for nothing else, go to it to see the silly cartoon!

Ah ba-de, ba-de, ba-de, ba-de, that's all folks!

Saturday, April 17, 2010

“Said woman take it slow, it’ll work itself out fine. All we need is just a little patience.”

Hi guys! Did you end up reading any of Kelle Hampton’s blog? I’m totally addicted to it. I am just amazed by the way she can put her feelings into words, and I share so many of them. I’m not so good about sharing all of what I’m feeling through this blog, I’m not comfortable being so… naked. Anyway, I’ve been enjoying that lately.

If you haven’t heard already, we spent the past couple days back in good ol’ Westchester Children’s Hospital. We had a check up with Dr. James on Thursday and he noticed that Sarai was breathing very rapidly (though not labored) and had high blood pressure. He thought we should head over to the hospital and make sure her heart wasn’t being affected by the ACTH (a common side effect of steroids). She had an EKG and another echocardiogram. The echocardiogram showed a TINY bit of thickening in the heart walls (totally reversible after the ACTH is stopped), but it’s not enough to be concerned with. She had a 24 hour EEG that still shows improvement over the last one, but she is still having some spasms. Dr. James said, “It’s a little like finding a needle in a haystack,” meaning, she’s not having many.

So we’ve started weaning her off the ACTH, a little scary because it’s really helping her. We’ll lower it again next week. They also started her on another round of antibiotics because she’s got this pesky white count that just won’t come down and they’re not totally sure why.

Dr. James told us that the ACTH would probably make Sarai put on some weight, but this is ridiculous! She’s starting to look like a juiced-up Jason Giambi! (Although I’m sure the grand jury will be more understanding in Sarai’s case.) I think she’s put on 4-5 lbs. As Billy Fuccillo would say, “She’s huuuuuuuuuuuuuuuuuuuuuuuuuuuu-gh!”

Tuesday, April 13, 2010

“In my life, I love you more!”

Hi everyone. Are you getting a big dose of spring like we are?! I’m loving it. It puts a little pep in my step. I even got out tonight for a yoga class. But enough about me….

Sarai is doing much better. She seems to be over the pneumonia, and is now on a higher level of topamax. She’s having no side effects, and Adam and I both think it’s pretty much stopped any of the leftover spasms. We go see Dr. James on Thursday, we’ll see what he says. I feel so much pressure to have to identify any spasm/seizure activity that she has, and I don’t really know what I’m looking for. I know what they look like, but sometimes it’s nothing. How do I know what is what? It’s scary.

Sarai was evaluated by the vision therapist, and she will soon begin vision therapy 2x/week. The therapist, Joanne, said that right now, her vision seems pretty poor. She said to be careful to not move her too quickly, don’t let people pick her up fast, ease her into everything, because we don’t know what she can see and what she can’t; it can be frightening for her. Another therapist was telling me that her grandson had a vision delay when he was an infant. He visited an ophthalmologist (like we did) who said his eye was fine (like we heard) and to give him time because he was in a range where his vision was ok for now (same news we got). They then went to an optometrist, and they don’t look at the structure of the eye, but at how functional the vision actually is. They fitted the little guy for glasses at 6 months and he’s doing really well. So I said, forget this ophthalmologist guy, we need an optometrist! We have an appointment in two weeks.

Anyone else listen to Rosie Radio on XM? I do almost everyday. I love her. Everyday she talks about something I can relate to. Today was a little more close than usual. She was talking about having children with disabilities. She began reading this poem, Welcome to Holland. I’ve read it before on my friend, Brandie’s blog. It’s a perfect metaphor for what it’s like to have a child with special needs. Check it out here.

Rosie also had on a woman, Kelle Hampton, who is mom to baby girl, born just 11 weeks ago, with Down Syndrome. Her blog puts mine to absolute shame. I read it today and just cried. If you’ve got a box of tissues handy, read the birth story of her daughter, Nella….

I’m going to start following her. She’s an amazing writer, her pictures are amazing, her strength is inspiring. It just gives me chills. Read um, and weap.

I almost forgot, my friend Nate and his wife Kristia welcomed a beautiful baby girl into the world on the 11th! Can't wait to meet you Isabella!

Sunday, April 4, 2010

“Jubilation! She loves me again! I fall on the floor and I laughing!”

No real significance to today’s title, just love my baby! And S & G.

Happy Easter everyone! As you know, it was Sarai’s first Easter, so of course the Easter bunny didn’t disappoint and brought her her first basket. When Katie and I were kids, that tricky bunny used to hide the basket in the craziest places, and today’s bunny is no different. After searching the whole house, Adam and Sarai found her basket in the dryer! Silly wabbit…. He brought her all kinds of adorable outfits and some yummy candy too.

Mom and Bill were here for the weekend. We had such a nice visit and a delicious surf and turf Easter dinner! My stomach is still smiling. And the weather couldn’t have been more perfect. Spring is really here, trees are budding, the air smells fresh…. Jubilation!

On a yuckier note…. Un-jubilation if you will… Sarai didn’t sleep great last Wednesday, so I took her to the doctor. Her cough (which really hasn’t gone away since RSV in January) kept waking her up, and she had a runny nose in the morning. I went to the doctor just to be sure because of the ACTH weakening her immune system, but was sure they’d turn me away as a silly, worried mom. Well, turns out she has pneumonia. Her lungs sounded clear, but she had a REALLY high white count, and a chest xray confirmed the diagnosis. So in addition to everything else, she’s now on an antibiotic. We had to check back in on Friday, and we’re going back again tomorrow. We’re lucky they didn’t send us right to the hospital, but as they said, her lungs sounded clear and they didn’t want her to pick up something else while in the hospital.

A couple weeks ago my cousin Julie took Katie to a psychic/medium. (Long, interesting story.) I called Katie on Thursday to ask, “So, when you saw this medium lady, did she happen to mention anything about my being Jack the Ripper in a pervious life?!?! Sarai has pneumonia!” Unbelievable. But, she’s a trooper, as usual. The doctors in the NICU called her a champion, her pediatrician keeps telling me she’s a survivor. Like I don’t already know!

We decided to follow up with Dr. James rather than going back to Corn-hell. (HA! I’m sorry, that’s really mean…) We see him on Tuesday, Sarai has her vision evaluation for early intervention on Wednesday, and we have a meeting with all her early intervention providers on Thursday.

Welcome back to school, teachers! Hope you all had a nice spring break! June is just around the corner! Miss you guys!