New Pics from Darmia, Auntie Donna and Uncle Shawn

We've had a really busy few weeks. Amelia is well. Still transitioning into school. She's been spiking these high fevers at night, I give her tylenol and breathing treatments and it's gone by morning and she's not showing any signs of being sick. Completely acting like herself and laughing at my silly songs and her cartoons. I spoke to Amelia's Pediatrician about it and we both agree it must be neurologically based. Lots of times kids with neurological disorders have trouble with the brain controlling the body's temperature. So that's been tough, because it means we're up all night and then she is sleepy for school. Also, her G-tube site is still a mess and I've been having to cuaterize it every other night, with silver nitrate sticks, which is horrific. I know the granulation tissue (the tissue that grows out of a g-tube site, trying to heal the "wound" which is the hole the g-tube is placed into) isn't supposed to have any nerve endings in it...it's a crock! Amelia screams and cries bloody murder. It's literally torture. The only thing that keeps me doing it is the knowledge that if I burn all this stuff off and clean up the site, I'll be able to stop doing it one day -- hopefully soon. She recovers pretty quickly tho if we turn the right cartoon on.

Speaking of which...our young miss has become extraordinarily finicky over which cartoon episode is put on for her. So funny and at times irritating. Nestor and I have gotten into arguments over this because I'll say "Enough! We're teaching her obnoxious habits, that she can get her own way every time she puts her hand in the air" (this pointing technique she's developed means "CHANGE IT NOW!!!!", subtle) whereas, Nestor feels like this is the only place in her life where she has any control and we should honor this small request; "she doesn't get to choose what kind of food to eat, which clothes to wear, where she wants to go or have the voice to make demands of us...so let her have this small concession if it makes her happy." sigh. I have to agree with this arguement. However, lets just state right now that after watching the first 2 seconds of what-used-to-be-her-favorite Backyardigans episode, it's not so easy to just keep putting on one after the other. We went thru 9 in a row the other night before she finally gave in and allowed us the viewing pleasure for about 15 minutes before raising her hand in the air to demand the next viewing choice. I'll tell ya...four letters, D-I-V-A.

Here are some pics that were sent by Amelia's Aunt Donna today. They're from Darmia's birthday party (a few weeks ago I posted about Amelia's fun time there) and from Amelia's spring break when we met up in central park with Aunt Donna, Uncle Shawn, Darmia, their friend, Alex with his newly adopted, 3 legged pooch, Alice.

Amelia and Mommy painting Tinkerbell at Darmia's birthday party

Amelia making friends, as Mommy finishes the project

Amelia napping next to Daddy, while Alex rubs Alice's belly

Daddy enjoying the day -- with a very fancy cup holder!

Uncle Shawn and Mommy listening intently to someone saying very important things!

Clearly, these photos were taken by Auntie Donna with help by her assistant, Darmia -- which is why they aren't featured. We promise to include them next time!

Try doing this in Grand Central!

I promise to update soon, but my friend Jodi posted this to her blog and it made me so happy. I had to share it with all of you. Enjoy!

A Milestone to Note

Amelia at school

This weekend we went to our friend, Darmia's 4th Birthday party(daughter of dear friends, Donna and Shawn). We've been attending Darmia's Birthday parties for the past 3 years and it is always with lots of tears and drama (Amelia's, not Nestor's) that we make it though a dreaded hour.

Well, my friends, Amelia is now 3. She goes to school. And now...she attends Birthday parties!!! That's right. We were there for over an hour and Amelia was so into it. She didn't cry, fuss or scream at me. The kids were doing plaster craft (SO FUN!) so I picked out a "Tinkerbell" plaster craft and pushed her stroller up to the very long table where everyone was painting. She was happy as pie to be sitting amongst the kids with a smock on. I started painting the piece -- thinking she would just watch...but out came her little hand for the paint brush. So, hand over hand, we painted Tinkerbell. It was really awesome! And it looks even lovelier;)

There was pizza and cake. Again, at the long table with all the kids, Amelia tasted the whipped buttercream frosting. Then, there was music and dancing. Amelia started to complain then, so I took her out of the stroller and walked her over to where the other kids were doing the "Chicken Dance". It must be that Latin blood, because our girl was so happy to be up and dancing (oh, my aching back tho!) -- but the complaining stopped and she was into it!!!

We left at about the 1-1.5 hour mark. We collected Amelia's plaster craft and headed out. What a great party and a real milestone for The Serrano's.

This weekend we're going down to Baltimore for Passover AND another Birthday party! Our little cousin Austin turns 1. Amelia is such a party animal!!!!

A Quick Update

In a nutshell....

Amelia stayed home Monday, went to school Tuesday, spiked a fever Tuesday nite, stayed home Wednesday and Thursday and is in school today (Friday). We started her on heavy duty antibiotics on Wed. and her ENT upped her Zyrtec dosage 50% when we went there yesterday for an appt. This morning she woke up soooo clear. I couldn't hear her breathing -- and I can always hear her breathing. She looked so comfortable. Unfortunately, it's only for 7 days and then we put her back to the old the dosage. At least she'll get thru this cold better and we know in the future that's an option to dry her up.

It looks like Amelia will be getting the strabismus (eyes) and tube (ear) surgery on May 7th. The tubes we've done twice -- no big deal -- and the strabismus...well, we have a fantastic eye surgeon (Yes Dad, you're the best eye surgeon..but we need pediatric, ok?) and he told us getting the eye surgery is like getting the tubes done. Takes 5 minutes and no big thing, so....there we are! I'm excited to see her eyes look directly at me, straight on. It'll be good to get that taken care of.

Amelia has been making all kinds of incredible sounds and gestures. She is soooo vocal. She'll look directly into your eyes and talk to you. I just wish I had a book called "Amelia Speak" which could interpret each sound. Also, she is now making big demands on us to turn on the TV, in which she points at the TV and yells at us. And heaven forbid you put on the wrong program...that arm goes right up again and she will howl until you put something else on...and heaven forbid that's wrong...you get the idea. We love it all. Although we have created a bit of a monster. However, I would prefer she make her preferences known. Such a fine line between encouraging communication and creating a spoiled child who gets everything she wants when she wants it. What to do, what to do? At this point we've been encouraging it -- anyone have an opinion? I'm not kidding, we can go thru 7-8 episodes of her favorite cartoon until we reach an acceptable choice. We live in fear of that arm going up and pointing at the TV.

Busy weekend ahead of us. A friend's birthday party and hoping to see Nestor's sister and family too. Then we go to Baltimore for Passover next week, where we have more birthday parties and family stuff planned. It never slows down...just the way I like it!!!

Ever feel like you've been hit by a mack truck???

It's Saturday morning. I've been up with Amelia all night long. She's sick...big surprise. That's protocol for kids when they start school, right? She has tons and tons of secretions. I've been suctioning and wiping nonstop since around 4pm yesterday.

But let's backup. Wednesday Amelia started school. It was very exciting. Nestor and I drove her to and fro this week...looks like that'll be happening next week too, until they get the paperwork finished and her nurse in school can ride the bus with her. They're different contracts for the nursing agency -- the Dept. of Transportation (DOT) versus the Dept. of Education (DOE), yadda, yadda, yadda.

So, when we walked into the lobby of the bldg. with Amelia, all these women were getting off the elevator with strollers to bring up the arriving children from the buses. They all saw us (about 8-10 ) and rushed up to us cheering "Oh my God, is this Amelia?"and so on. That was it. I wanted to take her stroller and run the other direction...but I didn't. I just got very filled up and thru a clenched smile -- holding back a floodgate -- I squeaked out a very weak "yes." I was so emotional and I didn't think I'd be, because I am, truly, so excited for her to start school.

Also there was her new nurse at school, Toni. She's a sturdy, young woman with lots of personality and smarts -- thank goodness. She seems to really get it. Amelia will be sharing Toni with another little boy in her class. He is so cute! What a handful the two of them are. But there are only 7 children in the class (uh, eh-hem...Miss Amelia is the only girl -- what a Princess-- by the way, that's what Toni calls her) with a teacher, two assistants, another child with a one-to-one, another child with a nurse and Amelia and the little boy with Toni. Lots of extra hands around to help out!

Amelia's nurses, Keisha and Lia came with her this week just to get her adjusted and train Toni in Amelia's routine. Toni did great and I feel confident that she'll do great next week when Amelia is all hers. I was there somewhat, but got kicked out each day by them to go to the gym and let them situate Amelia without Mommy being too close by:( Overall, Amelia did really well this week. They did lots of circle time and books. She had Speech, Occupational and Physical Therapy in school this week and all her therapists seem knowledgable and terrific -- with lots of exciting ideas and goals for Amelia. She did fall asleep each day at school, which is fine, as she transitions into her new schedule. Not much napping after school, but definitely having a wierd time adjusting to her new life. She'll get it, I have faith -- but of course, I know now...that she has also been getting sick the last day or so.

So, yesterday morning I noticed she had a lot of stuff coming out of her nose, but blamed it on allergies. Not so. After school was a whole other animal. Keisha tried to take her out and she had a total meltdown. So she brought Amelia home and we put her into her crib, where she fell asleep for a little while. When she woke up, it was like the floodgates had opened and her nose hasn't stopped running and the coughing and sneezing has been endless. So I'm hoping that she gets it out of her system and will be better by tomorrow so she can go to school Monday. Oh well, I guess this is the life.

Also, on another exciting note, Amelia has 20 Res. Hab. hours a week thru her Medicaid waiver, which we have never been able to fill -- could never find the right person and yesterday...we did! So wonderful. This woman, Jossette, came over with our MSC, Karen from UCP and we fell in love with her. Jossette is smart, she works within the special needs community at YAI in Brooklyn (Amelia's school Roosevelt is also YAI) and wants all the hours. Even with Amelia waking up a miserable little monkey yesterday, she wants all the hours -- YAY! So, the paperwork needs to be done and then Amelia will have new friend here every week. We're very lucky.

And to round it up -- Nestor came home on last Saturday and it was great to have him back. It's been a really hectic/stressful week, so we haven't really had any real time to "take in" each other being around...but we will.

So everyone please send healthy thoughts our way.

Also, wanted to note...Happy 1st Birthday Sebastian. Sorry we'll miss your party today. Peanut butter and jelly sandwiches with cake and ice cream sounds scrumptious! I also think your Mommy, Veronica is really cool. Food for thought: Veronica sent out invites keeping the party on the DL and letting friends know that it's cool to come without a new gift. She asked for recycled toys if you had them. I think in the spirit of today's economy -- that was such a classy move by you! Thanks for being so thoughtful.

Wednesday it is

Allan & Amelia -- action shot
And yes, I cut her hair this week

Yep. The paperwork has been signed and Amelia will officially start school Wednesday. And not a moment too soon.

Her Speech Therapist, Keisha said to me yesterday when she got here "I have some bad news..." and I said "Stop. Stop there...Amelia is starting school Wednesday." To which she replied "Oh, thank goodness because another feeding case came up and blah, blah, blah..." You get the point.

Also, as I sit here blogging, Allan, Amelia's PT is doing his very last session with her:(( So sad! We're going to miss his sweet smile when he walks through the door twice a week -- which makes Amelia light up and laugh too. Happy trails Allan! Those lucky kids in Florida.

So it's crunch time as we transition into school. I am still looking for a Speech Pathologist and Occupational Therapist to come to the house after school hours, 2x60 (just putting it out there for anyone reading...perhaps has some ideas...hint, hint!). Other than that, we have almost everything in place. Except I still have to label everything -- clothes, bookbag, feeding pump, suctioning unit, medical supplies...you know, the normal stuff for school. Tick tock, tick tock!

And on a very happy note, Nestor is finally coming home tonight after being in LA for almost 2 months. It will be great to have him back -- even grumpy and jet lagged. YAY for Amelia and me!

Out of Town

Amelia and I have taken a little trip to Baltimore to visit the family. We've been in the city without Nestor for about a month and a half, so my Mom came up Tuesday and we drove down to MD on Wednesday. It's been really nice to be around the family and all the tumult that comes with it. My sister's kids are bursting with energy and they both love Amelia a lot. It's really great for her to be a part of that. I don't want to brag either, but my little niece, Maya, learned to say my name yesterday (without the "Aunt" part -- she's not even 2 yet...she'll get it eventually) and has not stopped saying it. No matter where I am there's her precious little sing-song voice saying "Deb-bie", to which I reply "Ma-ya" and she smiles the biggest smile I've ever seen and says back "HI" with a wave. So sweet. I'm not sure what Amelia's take on all this love and interaction is, but she's somewhat competitive with Maya, so I'm hoping it'll spawn a little communication somehow. We'll see.

We're still working on getting her into school ASAP. We've gotten all the paperwork from our Dr. in to the Board of Ed and now it's just waiting to see what they decide in their assessment for nursing. We already know they have to approve it. The school nurse at Roosevelt has out right told me that Amelia's care is too much for her to do herself and she will definitely need a nurse to vent her g-tube and hook up all her feedings, along with any nebulizer treatments she may need during the day and so on. It's all just a wait and see game now.

On top of everything else, I got a questionnaire for Jury Duty in Orange County (that's where our house is, even though we live full time in NYC because of Amelia's needs). Unbelievable! So I had to call her Pediatrician and get her to do a letter for me explaining that I'm a full time caregiver to a child with special needs. When it rains, it pours, I guess.