Saturday, January 31, 2009

TIME Magazine Article: Stem Cell Research

A very exciting article from Time Magazine. Gives all of us hope that one day soon we will be able to help our kids reach their ultimate potential. Keep on keepin on!!!!!!

Find this article at:,8599,1874717,00.html

Wednesday, January 28, 2009

A Birthday Miracle

An action shot of opening gifts.
That's me holding up a ""Birthday Girl" shirt my folks got her.
Nestor is helping Amelia stand, Sarah is to my left, my sister,
Jackie is next to her and Ezra, my nephew is sitting in front of her.
On the right is Donna with daughter, Darmia.
This is after most of our guests had left -- it was crazy!!!!

Well, we did it. We had 30 people in our little apt and it wasn't so bad. As a matter of fact, I'd say everyone had a pretty terrific time. The kids stayed to the black rubber playmat aka "the mosh pit", where all the toys were strewn, which was perfect. Kids played, kids one point we had 3 kids napping in the bedroom during the party (Amelia in her crib, cousin Andrew and g-dsister, Darmia on the bed -- hidden in the coats) -- what a crew. My parents, Nestor's sis w/ family, Aunt Andi (my Dad's sis), sister and nephew, cousins w/ kids and our friends & kids came to feast on tons of pizza and ice cream cake.

Amelia got lots of beautiful gifts. Lots to wear when she begins school (we're shooting for March 2nd), including a Tinkerbell backpack to match her new Tinkerbell AFO's (leg braces). So cute! How well coordinated. She also recieved a gorgeous enamel bracelet from her Titi Terry and Uncle Artie -- which is the perfect compliment to her pearl and crystal necklace. What a Princess!

Nestor left for LA on Monday, so it's just me and the girl for awhile. He goes out every year at this time for pilot season (Networks greenlight their shows for next year and actors flock to Hollywood to audition for them) so keep your fingers and toes crossed for us.

Yesterday was fun. My Aunt Andi and cousins came up to NYC to go clothing shopping for my little cousin's Bat Mitzvah in May. I met them for lunch and we spent the rest of the day together. It was really nice afternoon. I haven't done a girl afternoon in so long -- it felt like a real break, especially after running around all last week trying to get everything in order for the party and school, etc. I had two glasses of Chardonnay at lunch! When's the last time I drank like that -- let alone at lunch???

Last night was Amelia's Speech Pathologist's last session with her. We're soooo lucky because his supervisor, Keisha, is going to be sliding into 3 out of 5 of his weekly sessions for us until we transition her into school. Thank you to the therapy gods!

Wednesday, January 21, 2009

Birthday Madness

Amelia turns 3 on Saturday. I can hardly believe it. Time has flown. Nestor and I are having a gathering of family and a few friends with kids. It will be chaos as we are expecting 34 people in our little one bedroom 725 (?) sq. ft. apt. Thankfully our landlord has given us access to a vacant apt upstairs to put some of our stuff into for the afternoon (stroller, some toys, etc.). My parents, sister with nephew, cousins (married w/ 2 kids) and Aunt are all schlepping up here for the toddler party. It's so sweet and we really appreciate all the effort they're putting out to get here. Nestor's family will be here too and it looks like even Spike, Mr. Collegiate himself may make it (and he's studying non-stop for his MCAT's, so we really appreciate the effort). It's crazy.

Tomorrow is Amelia's IEP meeting. That's the meeting where we sit down with Amelia's service coordinator, Tamara and her new CPSE Administrator, Alice with all the evaluations that were just done, doctor's "letters of necessity", etc. and figure out a mandate for her for the next 3 years. I'm pretty nervous about getting everything for Amelia that she needs. All her therapies -- in and out of school will be decided here, so we have to be really clear and concise about what we want. Alice seems to be lovely, I spoke to her briefly on the phone, so I expect it will go well. I'll let you know.

We decided last week that we will be extending Amelia's EI services. With everything that has to happen before she goes to school, there would be a lapse in services. Even though she won't be getting Speech, our PT has extended his time in NYC for another month, so she will be getting all of her PT, 2/5 of her OT and all of her special instruction. Better than just lying around for a few weeks while we get everything in order. We can pull Amelia out of EI anytime and put her into school then.

Yesterday we went back to UCP for Amelia's 2nd fitting of her replacement braces. They look great. We chose "Tinkerbell" as the fabric on the braces and it looks really cute! Getting the braces fitted is like having a wedding dress fitting. You keep having to go back for them to tweak it. Anyway, we get the completed pair on Monday morning --YAY! Also, we ordered a new stander for Amelia from a picture I found online. It looked so petite and utilitarian -- no bells and whistles, just a simple place to stand up. WRONG! Michelle,PT at UCP ordered this monstrosity for us and....WOW...forget it. I couldn't put Amelia into by myself and it was HUGE! It was really wide, no castor's to move her around and she hated it the moment we finally got her into it. It was not user friendly and I was really upset that I had put Michelle through all the trouble to order it. She was, as ever, gracious about it and even lent us her Gecko stander which Amelia is doing great in. It's low to the ground (her Rifton stander was high off the ground) so I'm hoping we can put her in it a little during her birthday party so she can play with her little friends at their level. We were also supposed to get a Rifton gait trainer (like a walker) to borrow, but the one that the supplier brought was sized for a young adult -- I think it was actually bigger than our apt! Forget that. We don't really have much use for a gait trainer until the warmer weather anyway because there's no room in the apt. to move around much in it (it's fun to take to the park or up to the house), so we'll get another loaner in spring.

On a personal note, I've lost 17 pounds. I'm getting to the gym 4-6 times a week and really counting calories. It seems to be working and I'm making smarter choices and really not hungry, so that's great! I'm just measuring everything out and keeping it healthy. I went to the Gap the other day to replace the one pair of jeans I had that fit, that were in our stolen suitcase and guess what? Size 8! Truly and I can even breathe in them. I'm very motivated to keep it going -- I'm beginning to feel and look like me again and that's all I need to stay on track.

It looks like Nestor will be heading out to LA next week for pilot season (when all the Network's greenlight their new shows for next season and actor's flock to Hollywood to audition for them), so Amelia and I will be flying solo for awhile.

A shout out to Jodi for kicking my butt to update this blog. I've been a little hectic, but love getting our updates out there. Thanks for the shove!!!!!

Sunday, January 11, 2009

Oh, My Spinning Head

Photo by Tina Guiomar

We've had such a crazy couple of weeks and every time I sit down to update the blog something comes up. We had a wonderful Christmas and Chanukah with our families. Tons of lovely food, drinks, laughs and, of course , gifts. When we came home from Balto after the holidays, our suitcase was stolen while unloading the car. Amelia's AFO's (leg braces)were in there and our laptop -- plus the only clothes that actually fit me (finally really working on losing weight) and all my makeup, bras, etc. Sucks! So there's been lots of running around replacing things -- including taking Amelia to clinic to get casts done for her new AFO's. So we've been dealing with police reports, insurance co.'s, etc. Neverending! Trying to find receipts for things, talking to Amelia's medicaid service coordinator to find out if Medicaid will even pay for another pair ($2,500!). My head is swimming.

In addition, we had to take Amelia to get her evaluated for CPSE (Preschool) this week which was exciting, exhausting, so on a so forth. Even though Amelia ages out of EI (Early Intervention for kids 0-3 yrs. old) because she has a January birthday, we have the option of extending services until September of 09. This has been our intention from the start because of Amelia's fragile immune system -- wanted to give her the extra time to be that much stronger. The first day of evaluations, Tamara, Amelia's Service Coordinator for EI arrived and promptly told me that John, Amelia's Speech Therapist -- who took 4 months to find to replace her ST who left in early August and has only been with us a couple of months -- is resigning from his NYC cases on January 27th! OY. We are also losing our PT the end of this month and have yet to replace her OT who left in October. So unless we are able to replace these therapists quickly, Amelia will be receiving less than half of her mandate. Realistically, not going to happen. We have had such a horrible time trying to find the few therapists we could. So with lots of anxiety and many conversations with Nestor, Tamara, other Moms, Roosevelt's Director (the school we're sending her to, and yes, they have availability for her on January 26th) we have decided to send Amelia to school in TWO WEEKS!!!!! I am so overwhelmed, nervous, terrified, excited, giddy,etc. I'm so not ready to send her this quickly. There are many meetings that have to take place before her birthday on Jan. 24th. We have to have her 6 month eval for EI, then a IEP meeting with CPSE to put together a mandate for her. Meanwhile, I have to get letters of necessity from our Pediatrician so we can get Amelia a nurse in school -- to keep her airways clear as she is at great risk for aspiration still and we just got out of the hospital 3 weeks ago, also to get her the maximum amount of therapies we can while she's in school and some after school. And I called our nursing agency to tell them. No idea what's going to happen with our nurses. One of our nurses, Keisha, is open to going to school with Amelia, but Lia, her other nurse -- I don't see it happening. She's been on jury duty since last week so I haven't even been able to speak to her about it. So much stuff to do in such a short amount of time. Can we actually get it all done?