The beach: friend or foe?

Here in Southern Ca the beach is a pretty big deal. Everyone is just waiting for the weather to cooperate to flock the beaches. So it’s amazing that last Sunday was Natalia’s first day at the beach. This was the first time that the weather was beach worthy and Natalia was 100% healthy. It really wasn’t planned, we went for brunch to Candela’s in Coronado Bay, which has gorgeous views of the San Diego skyline and bay…and spur of the moment we just thought we’d go for it. We didn't know what to expect.At first we let her feel the sand and then walk on it, she didn’t seem to like it much at first but warmed up to it pretty well. After a while of playing in the sand we decided to walk to the shore.

Uh oh! That was a real shocker for Natalia! She tried to take it all in and just as she was getting her head around the idea of the sea a tiny ripple of wave came up and wet her tiny feet. It was cold. Pandemonium broke loose and she wanted out NOW!

We left in a hurry… but we’ll be back soon to try again.

A few of her favorite things

Natlaia's likes and dislikes are constantly changing... she has no trouble letting us know what she's into. Right now she L O V E S:

Chewing anything she gets her hands on

Pulling curtains

This combo: one hand on temple and one in mouth

Exploring her surroundings

Standing independantly (or trying to)

Blowing rasberries
Her #1 Favorite ???

HER DADDY!!!!

Family Outing

We had a great weekend. We took Natalia to Balboa Park “the nation’s largest urban cultural park”, this park is amazing and it brings back fun childhood memories for me.



We took along Naty´s walker so she could walk around freely in a large area. She took to that instantly and walked all around a huge fountain, stopping here and there to observe the other people around who were equally curious at the peanut in the walker.



I asked someone to take this picture, Í'm rarely in any photo since I'm always the one taking them...
Here's another one. You can´t really see but there are some beautiful water lilies in the pond
It was a gorgeous sunny day so we got her these cool shades... which she didn't like very much. Oh well, another 6 bucks down the drain. We had to hold her arms to take this.When Natalia was all pooped out we went to Trophy’s for dinner, and there she got her second wind and had a blast with the crayons and toys… actually she was a little loud- I’m glad Trophy’s isn’t particularly known to be a quiet dinner scene.

We are making it a point to have more outings with Natalia, she loves to observe people and explore her surroundings, home is getting pretty boring for her now... and going out is sooo much fun! Hurray for summer!

This + that

I can’t believe more than a month has flown by with no posting! Well, Natalia’s been keeping me busy. She has a ton of energy! I remember thinking a few months back that maybe she would always behave like a cuddly baby. But slowly but surely, like everything she does, she has developed this cool little personality. She now D E M A N D S attention.

She has also found out the great power of reaching her arms. She never used to reach her arms as a sign of something she wanted, and now she reaches her arms and knows she can get someone to carry her or to move towards something she wants. I think it's great until I try to get her to play by herself and she throws a tantrum because she's not getting her way.

Defying her therapists’ advice, I got her a walker. She absolutely loves the freedom it gives her. When I assembled it I purposely didn’t attach the toy that went in front with the thought that she actually used it as a walker and not a toy. That way she has a clear view of where she can go. It took her a day to find out the difference between it and her excersaucer but now she moves all around the house and enjoys reaching and touching everything. Natalia also had her aunt Laura and cousin Coco come and meet her from Cozumel, Mexico. We loved having them and they fell in love with our peanut.

As far as signing, I finished my ALS for Infants and Toddlers course and loved every minute of it. It was great to be amongst adults and have extra activities; I didn’t realize how I missed that since I stopped working.
I’ve started to use the signs for “eat” and “more” consistently with Natalia since I started the class. She will look at the signs curiously and keep on doing whatever she doing. No indication that she’s connecting the sign to the concept yet… but I’ll keep you posted.

Here's a link in case you want to take a peek at an ASL video dictionary. It was a lifesaver for my class.

I find myself signing randomly pretty often to her; colors, food, animals, whatever. This class opened a wonderful new way of communication for all of our family and we hope it can help our peanut communicate and understand her surroundings. For now I'm just trying to keep it interesting for Naty and hope some day she'll sign back.

Uneventful Events

Aren’t you thankful for days that just sort of zip by completely uneventful? It may seem weird to appreciate this, but once you’ve had unexpected and stressful “eventfulness” in your life I guess it’s normal to be thrilled when you your days are completely Ho Hum.

That’s what all these days have been like for me. I finally feel the dust has settled since I stopped working. There have been a few moments that I miss my office but mostly I'm really thankful I have the opportunity to stay at home with Natalia. We have kept busy though. Here’s a rundown of events:

FINALLY she had tubes placed in. This event majored in uneventfulness Thank God!!

She had her 18 month well check and everything went great,she weighed 16.8lbs and 27". Thank goodness she’s a healthy lil peanut.

We are still going to OT and PT. Both are going great.

The bad news is since Natalia discovered standing and walking she resists tummy time with all her might.

She has developed an A T T I T U D E !!!

In other events: I’ve already attended 2 classes of ASL for infants & Toddler. It is AWSOME !! The catch? It’s not as easy as I thought it would be… I got a B+ on my first quiz… :(

Now BEWARE an overdose of uneventfulness can result in:

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.

Less is more

Yesterday was the first time a doctor has told us we don't need a follow up appointment. :) It was time for Natalia's 6 month check up with her Urologist so she had 2 studies done to see if there was still reflux from her bladder to her left kidney and guess what: NO MORE REFLUX!!! She'd been on Septra since birth to prevent any UTI's, but tonight, for the first time in her life she's not going to take it. We couldn't be happier. Oh, and btw she was 13lbs 6 oz , no wonder my arms ache...

My ex taboo

When Natalia was born and we were given the CdLS diagnosis my first question was: how will that affect her health. The answer wasn't a pretty one, we were given a long list of possible affections. Little by little Natalia proved that she was going to be ok physically, no heart defect, no malrotation of the intestines, no organ malformation, just severe reflux thank God.

After that was clear another reality was there staring at my face: how would her development be? Thinking about "it" really hurt not to mention talking about "it" . I remember wanting to know right then and there how affected she was developmental wise so I intently asked Julie, the CdLS Foundation contact in southern Ca for signs I should be on the lookout for , she sweetly answered "time will tell". I was devastated.

A year later, coming out of Nati's second developmental evaluation I'm amazed at how distant that feels. Development ("it"), for us today, is completely subjective. Her accomplishments thrill the heck out of us and make us extremely proud. She´s come such a long way, this kid has determination! And looking back I'm able to look at Julie's answer from a different perspective and you know what? She was right, only time will tell, but we're alright with that.

Mi primera vez

Pues si, es la primera vez que escribo un blog. Lo estuve masticando un buen tiempo ya que no soy escritora ni en antecedente ni en vocación. ¿Será que leer otros blogs religiosamente te faculta para poder escribir uno propio? ¡Vamos a averiguarlo!
Ahora, el principal motivo para escribir este blog es documentar nuestro viaje con Natalia, mi bebesita de 1 año que nació con un sindrome muy raro llamado Cornelia de Lange, y claro, cualquier otro acontecimiento relevante que suceda a nuestra pequeña y relativamente nueva familia. Supuestamente es recomendable y hasta terapéutico escribir sobre tu vida para poner en orden tus pensamientos... y vaya que muchas veces yo necesito ponerle orden a mi día a día. Claro que a largo plazo tengo muy claro lo que quiero y lo que se debe hacer, el problema es no dejar que el trajín del día a día te coma vivo.

Para empezar va una foto de la familia

Es una foto de su Birthday Party... claro, la tiara de princesa no podía faltar ;)