Sunday, December 27, 2009

I hope you all had a wonderful Christmas! We were busy running around, as usual. Sarai got some adorable outfits and some cool toys. I’m working hard trying to get her to play with them. She can spin some of the “spinny things,” but I’m not so sure how much she does on purpose and how much is on accident. But I’m confident that very soon she’s going to realize that her hands are part of her body, and she can USE them!

Last week, just before we went to Duke, Sarai had a little cough and runny nose. That’s back again. We’re giving her a little extra vitamin C, the doctor said as long as she doesn’t have a fever, it’s normal. The cold makes her pretty tired, and gives her what Adam calls her “sexy baby voice.” It’s sort of pathetic, but we can’t help but giggle at it. Mean parents!

Sarai’s been eating some food for the past week, and that’s made for some interesting diapers. She’s had cereal, pears and carrots. After the first day I thought eating would never fly, but it’s not going bad. So far she likes the pears best.

You guys know what a crazy year this has been for us, probably not the best for our family. But you also know some pretty amazing things have happened, so I decided to make a list of the top 10 best things about 2009… here goes!

10. Katie’s “slammin” cheese fondue - I don’t think I’d have made it to10,000 calories in one weekend without it! Thanks Kate!

9. Trip to Tucson with Katie and Sarai – fun!

8. My moby wrap – they say infants who are carried in a wrap cry up to40% less… I think I’d just cry all the time without it!

7. My new haircut – love it!

6. Being able to stay home with Sarai for a few more months than Ithought… thank you GCSD!

5. Meeting Dr. Kurtzberg at Duke and Dr. Escolar at UNC… they put a verypositive outlook on Sarai’s future.

4. VERY thankful that we banked Sarai’s cord blood!

3. We have the best family and friends, ever, hands down! We could nothave made it through this year without you all.

2. I have a wonderful husband who is patient, understanding, and an excellent father.

And last but not least, of course….

#1. Most thankful for our beautiful daughter. What would we do withoutour Sarai??

So that’s it, 2009 is almost behind us, and I’m very much looking forward to what 2010 has in store. Happy New Year!!

(Happy Birthday Jeff!)

Wednesday, December 23, 2009

“Walkin’ in a winter wonderland…” Dec. 23

So, we’re back in Syracuse, after just 3 days at home, where I don’t think it ever stops snowing. Sarai’s first Christmas will definitely be white!!

All our appointments have been rescheduled for the Duke trip for the first week in January, right after New Year’s. The reinfusion is set for Tuesday, January 5th. Adam’s got to take care of the paperwork for his job, and hopefully the three of us will be headed back down in two weeks. I’m SO glad they were able to get us right back in!

And, I keep forgetting to tell you guys, but I’m not going back to work in January!! The new plan is to go back in May and finish off the year in a kindergarten class. I’m so relieved, I can’t even tell you. So I’ve got a few more months with my little girl. Thank goodness. We’ve got lots more appointments to follow up with and I think they’ll be adding another early intervention service, vision therapy. Never a dull moment.

Christmas is almost here! And before we know it, it’ll be 2010! I’m ready to ring in the New Year and have a fresh start. I hope you all have a very merry Christmas!!

Saturday, December 19, 2009

“You’ll be in my heart… yes you’ll be in my heart…” Dec. 19, 2009

Hi guys.

Last week was a complete whirlwind. Going through the calling hours and the funeral was actually very healing. It was great to see lots of my dad’s old friends and to hear some cute stories. Katie and I spent some time getting pictures together and laying them out on poster boards for display, also enjoyable, seeing my dad young and healthy. Our mom was right by our side the whole time, that meant a lot to both Katie and I, A LOT. Thanks so much, Mom.

Most of you have already seen, but just in case you haven’t and you wanted to see the obituary, copy and paste the link…

Now that the hustle and bustle is over, I’m trying to adjust to being a person who has lost a parent. This is way more traumatic than I ever thought. The void I feel is immeasurable. I just can’t believe I’ll never talk to him again. I mean, I just had a perfectly normal conversation with him a week ago. But I am comforted knowing that he’s not suffering, and feeling like now he’s watching out for all of us. I feel like now he’s seen my apartment, that he’ll really be able to check in on us in a way that he couldn’t before. Sound silly? I don’t know, but I know he’s out there keeping an eye out for us.

I got a call from someone at Duke on Friday. They’re trying to reschedule all the appointments for the week after New Year’s. I should know for sure by Monday.

We’re snowed in for the rest of the weekend. Brrrrr…..

Thanks to everyone for all your kind words, thoughts and prayers. It means so much, I can’t even tell you.

Monday, December 14, 2009

“You're in the arms of an Angel; may you find some comfort here.” Dec. 14

Hi everyone. I can’t even believe I’m writing this, but to all of our shock, my dad passed away today after a 30 year battle with MS. He’s been so brave and strong for so long while fighting this awful disease, I don’t know how he did it.

I just can’t believe this. You would think we’d have been prepared for this, but there is just no way to prepare.

We are all now in Syracuse. I called all the doctors we were supposed to meet with in NC and we’ll be rescheduling the infusion and all the other appointments as soon as we can. For now, we’re focusing on our family.

I’m so glad my dad was able to meet Sarai and hold her and see her smile. When he looked at her, his whole face just lit up. He will be very missed by all his many friends and family. I know he’s in heaven right now, bouncing from cloud to cloud, free.

We love you Dad, ingumeter.

Friday, December 11, 2009

“Riding along in my automobile, my baby beside me at the wheel!” Dec. 11

Twas the night before a big road trip and all’s going well,
Sarai is excited to welcome back her stem cells!

Ok, I get no points there for rhythm, but it almost rhymes!

What a busy, bustling week we’ve had here! Sarai got 3 shots, including one called Synagis (for high risk babies to prevent RSV, a respiratory virus). The Synagis is nasty, the others she was fine with. But having the shots really put her out for a couple days. Poor Coleen and Bob had us over for dinner, and Sarai was not on her best “dinner-party” behavior. But she got weighed (at the doctor, not at Coleen and Bob’s!) and is up to 10 lbs 5 oz! Whew-ee!

Therapies have been going really well. And Sarai had appointments with the neurologist and developmental pediatrician this week too, both doctors she hasn’t seen since September. I was so excited to show off her smiles, coos and how much more loose her muscles have become. The developmental pediatrician is glad with how she’s growing and has progressed so far, but her not focusing on objects or tracking very well is a great concern. The neurologist referred her for vision therapy through early intervention, and the developmental pediatrician referred her to a neurological opthamologist. So we’ll be following up with all this after our trip to Duke.

Also, we mentioned to the neurologist that she’s fussy. This conversation went from 0-100 fast….
Me: She’s fussy. She doesn’t like to be put down, but she usually calms easily.
Dr: Is she fussy around the same time each day?
Me: No, not really.
Dr: Do you think it’s colic?
Me: I don’t think so, I think she’s just fussy. She’s getting better and better though.
Dr: Have you noticed any eye rolling or twitching?Me: No.
Dr: Well, even if you don’t see it, she could be having slight seizures that you wouldn’t pick up on.

What?? Really?? Or, she could just be fussy, right?? He wants her to have another EEG (she had one in the hospital that was normal) to check for seizures. I’ll keep you posted.

So, our second big trip to Duke is TOMORROW! I can’t believe how fast the time has gone! We’re almost all packed. We’re heading out in the morning, driving this time, to spend the night with my cousin Amy and her husband Kevin in VA. Then we’ll go to Cindy and Justin’s from there on Sunday morning. It will be a perfect way to break up the trip. I have no idea how Sarai will be in the car, but she usually just passes right out… I’m banking on that. We have appointments all week until Thursday in NC. The infusion is Tuesday, MRI is Wednesday, and we meet with Dr. Escolar on Thursday morning. She’s the doctor who was an amazing wealth of knowledge on our last visit. I can’t wait to see these guys!

I know you will, but wish us luck!! I’ll try to update the blog while we’re gone. Love you all!

Wednesday, December 2, 2009

“You’re in the arms of the angel, may you find… some comfort here…” December 2

Hi guys! It’s been a while, sorry about that. And because it’s been a while, you might have to read through this while I ramble a little… again, I apologize! I hope you all had a nice Thanksgiving! We sure did. My first Brooklyn Thanksgiving, it was fun!

Sarai’s doing good. She’s got good days and bad days, as far as her attitude is concerned. Can’t we all relate to that?? Yesterday was a BAD day. She was terribly fussy and didn’t even want to make donuts with me! (Was it a full moon?) Today was much better. She was smiling and cooing a lot, and just more relaxed in general. On Monday with her speech therapist, she said, “Wow, she’s so verbal today!” (The therapist said that, not Sarai. She’s got a good speech therapist, but not that good!) So, we take things one day at a time, and just know she’s growing and changing every day. Her head control is improving all the time, and she’s enjoying tummy time more. Lately I’ve been putting her on an exercise ball on her tummy, and she thinks it’s so funny! She pushes right up, looks around and gets such a kick out of rocking back and forth. Adorable…

We’ve had a babysitter set up for Sarai since last April or May. On Sunday she called me and said… she can’t watch her after all. I couldn’t believe it! I’ve really built a relationship with her. But she referred us to someone else, and now we’re all set again. Sarai has been watched for a few days with the former babysitter, so now will start with the new one with no “practice days.” We just don’t have time. Next week we have half a dozen doctor appointments and early intervention appointments. The week after, we’re off to Duke, then Christmas, New Year’s, and I’m back to work! So, it is what it is, and it will be fine. The woman is very nice and very happy to have Sarai.

Speaking of appointments next week… we see the developmental pediatrician and neurologist for the first time in 3 months. I’m DYING to see what they say! I’ll definitely let you know!

On our way to Duke in a week and a half… any ideas for slogans for onesies?? How about, “Welcome home Stem Cells!” I need a couple more ideas, help!!

I’ve been going to school for a few days, getting used to what our morning routine will be when I go back. It won’t be bad. My class is sweet, they ask every time I go in, “How’s the baby??”

I did an interview about our experience with cord blood banking, Sarai, and CBR with You can listen to it if you cut and paste this link…

It’s long, but there’s just so much to say!!

Speaking of links, my sister Katie thought I should make a public blog just in case anyone wanted to learn about us, so I made one and transferred all the blogs to that site (of course I would lose all the comments from you guys, so I’m not giving up this one!). But the newer and hipper version of Tough Little Peanut is….

If you want to check it out. It’s exactly the same.

Sarai was baptized this weekend, with Aunt Katie as her Godmother and Uncle Luis as her Godfather. It was such a beautiful November day, and Sarai looked like an angel in the baptismal gown that my grandmother made for my cousins and I with all our initials embroidered on it. My mom made her a beautiful Christening cap with Irish lace. It was such a special day for such a special baby!

Guess who's going to be 5 months old this week..... I can't believe it!