Say Aaaaaa

So these are the little suckers that've made my peanut's life imposible! I'm glad their finally out, although I know the bottom ones are only the beginning...

I might burst

I'm so proud of my Naty.

Here she is doing her favorite thing now a days (don't mind the gtube dragging along our hallway):

She enjoys other kids and wants to play with them (I think she desperately needs a little brother or sister) ;)

PT has done amazing things for her , she's come a long way.

She feels she's such a big girl, she doesn't want to be laying down for long periods of time and fusses until someone either sits her up or helps her walk around.
This is a cool gift she got from a family friend. The pony actually makes neighing sounds and moves his head and tail. Natalia loves it. We've named him Pinto.

O my gosh, I *heart* this girl so much!!

A New Beginning

I am no longer a working mom. (almost 3 weeks now). The company where I worked downsized and it was an obvious choice for them to cut the person who asked for the most permissions (I always tried to go to Natalia’s therapies and appointments). It ended up a very friendly parting, I worked there for 9 years and they we’re very generous with their compensation. But it was still completely shocking to arrive to my office and start with my morning routine and then 1 hr later get a call from the boss to go up to his office and be told “we’re going to let you go”. This was definitely not in out plans; I wanted to stop working until I had a second child. But if having our precious baby has taught me one thing it is to roll with the punches, so after two days of complete bewilderment I slowly started seeing this as a great opportunity. Don’t get me wrong: I didn’t work for pleasure. But, after sitting down with my husband to talk and make some budget adjustments, we concurred that we can live well with only my husband’s income. So this officially makes me a stay at home mom.

So everyone would think I have all this extra time to blog: um NO! At least not for the moment (although I want to). I am still in the process of learning to organizing my time, which is resulting to be quite a task. Staying at home makes time fly by, when I realize it’s already 11am and I haven’t showered. Then I feel bad thinking that by this time at work I would already have been thinking about lunch plans… and here I am in sweats and not have had breakfast. I know it’s a matter of getting used to, but I haven’t been able to kick off the feeling that these are vacations. So I have officially given myself a month of vacations: no thinking, no official plan making, just chilling (or trying to chill).

Of course the reason we decided I’ll stay at home in Natalia. I’m soaking up every second with her. We have increased early intervention home visits; I’m working on her feeding, since she’s stopped wanting anything by mouth and just basically focusing on her 100%, being able to do this is a true blessing.

Unexpected news

It’s been cold and rainy the past few days so we didn’t do much this weekend, just stayed nice, toasty and dry at home. But today we were forced to take Natalia out since she had a follow up appointment with her GI doctor. So I bundled her up to face the cold (no hat of course).

She had an upper GI test a few weeks ago and we were given the un-official results then and there that her Fundo is holding up perfectly. We were thrilled and that’s what we were expecting to hear in today's GI apointment, so it was a complete surprise to hear the other news her doctor had for us: Natalia has a hernia in her tiny stomach!! The doc thinks that the hernia developed now that she's spending more time sitting than laying down. That extra weight bearing in her stomach may have caused her stomach muscle to rub with her gtube and caused the hernia. I was in complete shock... I just never new this could happen. . My only comfort is that I don’t believe Natalia’s in any pain, she can communicate pain really well. There really isn’t much we can do now so we’re just going to observe her and see how she does and evaluate if surgery in needed. I'm praying she doesn't, last surgery was tough on her.

She isn’t gaining a lot of weight either; she only gained about 6 oz since Dec. But I now that she’s on her own agenda with that as well… although she still is plotting very well in the CdLS height and weight charts, so I’m not going to loose any sleep about this. She's the pink dot.

Her stats at 17 months: Weight 15lbs; Height 25.5 inches. and 100% CUTEPIE!!

Natalia 101

Here are a few random facts so you get to know my peanut a little better (in no particular order):

1. Natalia was born at 36 weeks, she was 3lbs 4oz and 13.75 inches long
2. She is still in reign since she still has no brothers or sisters
3. When she was born the length from her knee to her ankle was 2 inches
4. She has no speech, but definitely has different sounds (and faces) for different feelings and situations, thus gets her point across clearly.
5. At one point in her life that she was taking 8 medicines, we had a white board to keep track of times and doses delivered.
6. She had her ears pierced when she was 4 months old by a little old nun at the local hospital. She didn’t even flinch.
7. When she was born we were told she would never react to human contact and that she wouldn’t live beyond 1 year. Well, they obviously didn’t know who they were talking about: 16 month and going STRONG!!
8. If she laughs it humanly impossible not to laugh with her.
9. At 16 months she’s teething, her front lower gums are about to explode.
10. She rolled over at 8 months.
11. Natalia loves music; the louder it is the louder SHE is.
12. She wears 6 to 12 month size clothes.
13. Like many CDLS kiddoes, Natalia was born with GERD.
14. When she was 2 month old we found out she had some seizure activity, she used to look ever so briefly to the right as if in a daze. It didn’t seem natural to me so after some tests she was diagnosed with epilepsy and been on Keppra ever since.
15. She L.O.V.E.S textures: leather, silk, fur, chiffon … the softer the better. She can stroke it for hours.
16. Every single time we carry her she throws herself back and looks at the ceiling while being carried, this has been going on for her whole life.
17. She loves to be thrown up in the air by her dad, she laughs her head off. We firmly believe she’s hooked on adrenaline.
18. Our princess had her Fundoplication & GI tube operation when she was 10 months, she was given to much anesthesia and went into Cardiac Arrest. But being the fighter she is was out in 22 days, including extra days in hospital because on pneumonia and C-diff.
19. Natalia has the most beautiful dark, stranger stopping eyelashes.
20. When she was born she was stared upon for being soooooo tiny.
21. When she was 2 months old it was a reason to celebrate if she drank 2 oz (60mls)
22. She has the most beautiful smile, no, really, it’s amazing!
23. As of today she sits unsupported until she’s had it (about 20 minutes), stands with support (although we’re working on her not sticking her bottom out) and taking tiny tiny baby steps while holding on to BOTH hands. This is very VERY exciting!
24. Natalia has crazy curly hair, if you don’t believe me check out some other pictures. This is the reason I make it a point of giving her a hairdo every day (almost every day).
25. Her feet are soooo small that all she wore were sock until last Nov when the weather started getting chilly. As of today she still wears 0-3 month baby shoes.
26. She’s a San Diego Charger fan 100% (ok, so maybe her parents are…)
27. Her wardrobe is just insane. But I plea no contest: baby girl clothes are just too darn cute!!
28. I'm a better person because of her. She's shown me what true unconditional love is.

GI & show

Friday Natalia had an upper GI done as a follow up of her last hospital stay. My main concern was that her Nissen fundoplication was compromised and that her GERD was an issue again. Well, we don’t have the official results from her GI but the doctor who performed the test said her Nissen
was still tight. :) So 2008 is starting on the right track!!

We recently we had a family outing. My husband loves cars, so of course, if there's an international car show in town our family is there.

Juan wanted to be early so he could take his time drooling over, umm I mean admiring every car in the show, but we aren't that organized (yet) so we made it there at around 3pm.

There was a lot of bustle which Natalia seemed to enjoy. Juan was a great guide to the show, he made sure and made sure Natalia had a picture of each of his favorite.
Especialy the new Challenger!!! (Yup, I don't get it eaither)
Now this I could get: a $500,000 Rolls Royce. This car was just AMAZING!!

We had a great time, but what really excites me is that it's MY turn to choose our next family outing.... and no more cars.

A new year

HAPPY NEW YEAR!!!!
We had a great New Year party, Natalia was a party animal

oh! and the food!!! My sis and her husband made a delicious feast: Prime Rib, Ceasar Salad, baby potatoes in butter parsley, cauliflower melt. All I can say is W O W !!!

Sofía, Isabella and Natalia looked adorable posing in their New Year's outfit.

I'm going to miss my brother, sister and gang terribly!!

Sadly things are slowly getting back to normal, my sister & her family have left and now we're left with our normal routine slowly creeping back into space. For us that meant having Natalia's first medical appointment of 2008: she had to have a holter monitor on for 24 hrs after her last ecg came out with some inconsistencies. After her cardiac arrest she had some indication of Long QT syndrome so she's been having ecg's every 6 months but this was the first time we were called in to have the Holter. We went to her Cardio's doctor office and a technician placed the very sticky leads on her, Natalia was a champ, and we were off. No kidding, in & out in 20 minutes!! She had to have her normal activity which now a days is:

I have a video I tried to upload but blogger wasn't cooperating, I'll try to post it later, but YEAH!! she's bearing weight and taking tini tiny steps when you hold her!!! We are extremely exited!!

Back to the holter monitor: then I just took the leads off in 24 hrs and have to yet take it back to Cardio. We'll have the results in 7 days.

I still haven't gotten around to thinking about resolutions... maybey I should, like Natalia, just take it a tini tiny step at a time, that's a good resolution!