Thursday, January 24, 2008

Birthday Girl

I cant believe it! My little girl turns 2 today, time really flies. It's amazing to think of where we were 2 years ago today. What an exciting -- turned to nightmare -- series of events. Having a baby should be the most amazing day of your life, we were totally cheated of that.

I never knew the joy of holding my baby right after she entered the world. Yes, I held her...but she never cried, or rooted for milk or held my finger in the 10 seconds I got to hold her before they snatched her away and took her for testing. I didn't get to sigh in relief that the hard part was now over and we could have a day to bond as a new little family. My husband didn't look at me, with our new child lovingly snuggled into my arms, like the proud new papa of a baby girl. As I laid in the room for hours, while my husband disappeared to find out where/what/why/how/etc. had happened to our new girl, I was crying...hemmoraging...I didn't even get to see my little angel until hours and hours later, when they finally took out my IV and let me painfully make my way down to the NICU...where another woman (nurse) had given my child her first bath.

The upside is that as rough as things were....the next 10 weeks proved to be life changing, hard and, at that point, the most education I ever received in my life.

In the past two years I have learned the greatest love I'll ever know. I love more than I've ever loved. I ache more than I've ever ached. I cry more and laugh more than I ever have before. I've grown up. I have more responsibility on my shoulders than I ever thought imaginable. Everything is so complicated and yet my heart so simply belongs to her. I will do everything and then some to give her the best chances in life.

I think of the babies, some we knew -- some we didn't, who never made it out of the NICU. I think of them everyday when I look at my strong little girl and know how truly blessed I am to have her. She makes me get up every morning and thank the universe that she is mine.

Happy Birthday Amelia. I love you more than I can say.

Thursday, January 17, 2008


So we took Amelia to UCP on Tuesday and it was a smashing success. She had her whole team there. We started out at the lending library so we could borrow this cool thing called a "Creepster Crawler." It's a lightweight aluminum structure with 4 wheels and a harness hanging down to support her in quadruped. Mercedes (OT) who fit her into it said she did great and was really getting into it. We packed it into the car and headed next door to meet the rest of the crew.

Chrysanthia (Amelia's Fairy Godmother at UCP), Michelle (PT), Dr. Evangelista (Physiatrist), Armando (fits the Orthotics), Hirschel (vendor for Smartwalker), Karen (Medicaid Service Coordinator) and Amy (her OT thru EI who comes to our house 2x/week)were all there to meet us. So imagine all these people in the treatment room -- picking Amelia up, manipulating her, casting her legs for the orthotics that will be part of the Smartwalker and general she's been running lowgrade to highergrade fevers for three days (we believe it's from her 2 yr. molars cutting thru) AND...she did awesome. No crying, no kvetching...just very social and playing. We were so proud of her taking everyone on like that! So, the walker is being ordered and because Dr. E is leaving for the month of Feb. they're putting us on the fast track. Jan 28th we go back to UCP to make sure everything fits correctly and hopefully take it home that day. I just can't wait to see her running around the apt, getting her own toys and making real decisions for herself.

So yesterday, Wed., when Amy (OT) came for her session with Amelia, we put her in the Creepster. It was definitely a 2-3 person job. Making sure her head is up, her fingers don't get run over and giving her the input to move reciprocally . Lots of handling...but she really did great! She went back and forth across the apt about 4-5 times and really wanted to keep going. Also, I've noticed that since the other day there's been lots of independent movement by her, trying to get into a crawling position. In her crib, on the playmat. Pulling her little knees in, pushing up her tush and trying to push up onto her hands. She just doesn't have the upper body strength...but if she keeps doing this and we keep helping her...she'll build that strength by golly, we'll see to it!!!!

Anyway, another great thing is that we took her to the ENT today and she reported to us that, despite many other reports given to us by docs checking her ears...her tubes are, in fact, in place. She told us that others may think one is falling out because they are mismatched. I know, I embarrassing...having mismatched tubes in her ears. I teased the ENT that she didn't have to rush when she put them in...she could have gone and found the other matching one. Oh well. 'Ce la vie!

Today we have our new nurse here, Helena. So far so good. And tonight we meet the new PT. Everyone say a little prayer for us...I hope he works out!

Monday, January 14, 2008 we come

So tomorrow is the big day and we go to UCP to get Amelia fitted for her Smartwalker. She's also seeing the gentleman who fitted her for her braces, the Physiatrist, Dr. Evangalista AKA Dr. E and the rest of the crew over there. We're also going over to the lending library to see if we can borrow a piece of equipment called a "creeper" which helps facilitate crawling without breaking your back. At the present time, when we do crawling, it's me bending over Amelia, holding her trunk up and moving her arms and legs across the playmat. This would be a frame on wheels that she gets strapped into and would give her the support she needs to crawl independently. Sort of like the walker, but in quadruped. It's all very exciting for us. I feel like we're going to Disneyland with her a sense, it will be as exciting for her as being on a roller coaster because walking and crawling are sensations she's never really experienced in a solid way.

So, we're still having our nurse drama. We have a Wednesday nurse, a Saturday nite nurse (if we want to go out) and another nurse who will be filling in some weekdays, so overall, it's shaping up slowly. Key word: SLOWLY.

We finally got the paperwork approved for the new PT and she came over last Thursday for the first time. She was working awkwardly with Amelia, looked up at me and said "Amelia is SEVERELY hypotonic. Wow, I hope she can walk one day! I really do!". That was it for me. I waited until she left and then burst into tears. How can people be so stupid and insensitive? Saying things with no filter. I am fully aware of my daughter's challenges and I don't need a stranger coming into my home and blurting out whatever comes into her head as it comes into it!!!!!! Give me a break. I called my Service Coordinator and told her what happened. She blasted off a nasty email to the head of the PT's agency. Well, I got a call from him the following morning, apologizing for the unprofessional and clumsy comment. We have since replaced her with my friend, Carrie's suggestion of a PT she knows from her days with this particular agency. I spoke with him this evening. He's very, very busy and doesn't usually work in our neighborhood (therapists work by neighborhoods so they aren't running around in circles all day, on subways and buses and such) but is going to try and work out his schedule to accommodate Amelia's mandate of 4(days)x30(minutes)/week. Keep your fingers crossed for us.

And lastly, next Thursday, our little angel turns 2. I can't believe it. She is such a joy and brings Nestor and I so much happiness. Poor little thing is getting her 2 yr. molars and miserable!!!!! She's had a low grade fever for the past couple days, so we just have her on motrin and tylenol around the clock.

On a side note...It looks like Nestor will be working on the last episode of "Law and Order" for this season. We're rooting for the writer's strike to end soon...but it doesn't look good! It also looks like he may end up in LA in mid Feb. for a stage thing, which would allow him to be out there for the new movies (which were written before the strike) which are going into production now. Party time for the girls!!!!

Saturday, January 5, 2008

Goodnight, sleep tight...

Elvis and Blackie, 1/1/06

This blog is dedicated to our amazing girl, but I wanted to dedicate this entry to my "first" little responsibility, Elvis. He was my faithful companion for 10 years -- a loyal, spunky, sweet and very handsome Cairn Terrier. He's been with my parents for the past 2 years in Baltimore, since Amelia. Beyond the obvious difficulties of having a special needs baby come into your life, add living in Manhattan where you have to take your dog for walks and having a husband who can get a job out of nowhere (and we're praying for that to happen any day now!) and have to fly off to some exotic location for however many months to shoot....not so great to add a dog into that mix.

We had to put down Nestor's faithful companion, Blackie the Yellow Lab, when we returned with Amelia from LA, almost two years ago, which was a heartbreak. And Elvis, who was in good health then, stayed with my folks...and trust me...he did very well down there. Big house, big yard, lots of cozy cuddles and table scraps.

Not too long ago my folks, who hadn't wanted to upset me, informed me that Elvis had diabetes and was getting insulin shots with meals now. Soon after, he lost his sight, but was still gettin on, gettin on. Last week, just after our visit, he started going downhill a little, my Mom starting cooking soup and such for him because the vet said he was dehydrated and his kidneys were failing. He started throwing up a lot after he ate...anyway, my Mom called this morning to tell me they were taking him to the vet to have him put to sleep. This morning when my Dad came downstairs Elvis had made a mess. He took the little guy outside, when they came in he had a seizure and went comatose.

Sadly, I feel like I said goodbye to my little friend two years ago. I have been so wrapped up with Amelia and even when I would come in to visit, I barely had time to get down onto the floor and play with him. But he always responded to me, never held a grudge. Even when he went blind, his ears would perk up, his tongue and tail would wag when he would hear me...that's what our pets do, I guess -- give us unconditional love. The last goodbye I gave him was not fitting for a last goodbye.

I am so sad. Losing Elvis is losing one of the last links to my single life. Before I was Amelia's Mom, or Nestor's wife. When I was Debbie Ross. A young, hopeful, bright ingenue, who wanted to conquer the stage and screen. Elvis and I were great roomates. I lived in a floor thru above the infamous Elaine's Restaurant on the upper east side, with a loooong hallway, which he used as a raceway -- back and forth. We had lots of parks nearby, single friends (and sister) with dogs and a neighborhood who knew and loved him -- even Elaine used to ask me to bring Elvis down to see her. He used to get me out of the house on those beautiful weekend days, that many New Yorkers will just ignore and stay in bed. He also got me out of several boring dates when I claimed I had to get home because my dog needs to be walked. Elvis was a little guy, 26-28lbs, and was a little skittish because he always wanted to be right by you, which meant he would get stepped on unless he jumped out of the way, but he was always up for any adventure.

I love my family. I love being Mrs. Serrano and Amelia's Mommy. I have wonderful memories of yesterdays and am very lucky for the life I have led thus far. Those that have passed in and out of my life have left their mark...some deeper than others.