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!

My First Review

As I’ve stated before: Natalia is a ceiling fan inspector. If she’s in a position where she can throw herself back she’ll do it, no matter where we are and if there is hard or soft surfaces to catch her. My girl has no fear. A little has rubbed off on me from her Physical Therapist so we know that extending backwards makes those muscles over developed and that only makes her want to extend backwards more, which is a no- no for PT. So we usually try to correct her posture and make her to extend forward and "find her center".

Well, when I went to the store with Natalia I usually kept her in her baby car seat where she is in an almost lying position. But now Miss Natalia thinks she is too grown up to be in a baby chair (same as her friend Ben ;) ) so one of 2 things happen when we go to a store: either I leave her in the baby seat and put up with Natalia making a fit because she wants to be more upright or I seat her in the child seat of the super market carts and have to hold her with one hand to prevent a ceiling seeking accident.
Until I found this contraption:



This thing makes my ventures to Target and Wal-Mart pleasant again. It keeps Natalia in her seat upright. If she gets wobbly and tilts to one side it lends her gentle support so she can find her center again. It also holds her down on her seat so if she wants to inspect ceiling fans she has to fight the contraption.

Few things I buy are so useful… this was heaven-sent.

Here is a back view, Velcro is the true hero. You can Velcro it as tight or loose as needed. It has also come pretty handy in restaurant high chairs. It’s not so useful if your priority is keeping germs off since it doesn’t cover the whole cart, but it does give great support. And it only cost me 16dlls!

It’s from a brand called NoJo and it’s called Secure-Me Seat. Here is a link.

PS, I had N E V E R reviewed anything before, but I just loved this. ;)
And Natalia seemed to enjoy feeling in control too.

Dancing Queen

Here's a little of what Natalia's been up to, she has been so active lately, she practically demands we go outside and play...I love it!

Tough call

We had a Cardiology appointment where very troubling news was confirmed: Natalia has borderline Prolonged QT syndrome. Her EKG score from the Holter monitor was 460, and anything between 440 milliseconds and 470 is considered borderline Prolonged QT. The more I read about it online the more upset I get about and it confuses me because her Cardiologist told me that there was no imminent danger, so who do I believe, the doctor or the internet? The bottom line is that she can never have any type of anesthesia without being in a controlled environment, that means being able to monitor her vitals and having a defibrillator handy and someone qualified to use it. Just thinking about re-living the single most dreaded event we have ever lived (Naty’s cardiac arrest last year) makes me sick to my stomach.

This brings up all sorts of issues: her hearing test was cancelled AGAIN (this is the 3rd time!!) for two reasons.
#1 still has fluid in her ears
#2 they sedate kids who are over 1yr with chloral hydrate but NO T in a “controlled environment”

So here comes the tough part: she needs to have tubes put in to drain the ears; this means general anesthesia= S C A R Y
After that she will need to have the hearing test again but in a day surgery ward, even though her sedation will only be chloral hydrate = S C A R Y

The only other alternative is for her to not have these procedures but that would mean that she would never have a fair shot at hearing better thus being able to communicate by speech. It's an extremly dificult desicion to make but Juan and I feel that we should trust the Cardiologists (we spoke to 3 of them) and give Natalia a fair shot at verbal comunication.

I feel all I can do is pray that we’re doing the best for Natalia and that these procedures work out perfect.

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!!

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!!

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.

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...

Up, up ...and down

I’ve had a loss of inspiration since I lost my camera two weeks ago :( … and no, I haven’t bought a new one just yet but I wanted to share how Natalia’s feeding was going.

On Natalia’s appointment with her GI doctor about 6 weeks ago, she said she was time to change her feedings from Isomil to Nutren Jr, a more calorie rich and age appropriate formula. She gave us the game plan: transition slowly with just one feeding a day, and every 2 days change a feeding until she has 120mls of Nutren for her 3 day bolus feeds. Monitor her for 3 days after that is done, and if that goes well then change her 250mls at 30ml/hr continuous night feeding. If everything was still ok then we could start slowly upping the bolus rate to have Natalia finish her day feedings in 30 minutes instead of 1hr 15 mins.

We followed the exact instructions, and it went very smoothly… soon we were upping the feeding rate slowly 5mls per day. We started at 90mls and moved steadily to 130, our goal was 200mls an hour. We were transitioning like experts! Yayyy!!

Then one day Natalia was fussy and extremely gassy, her stomach was extended and she has having a lot of residual (the formula that comes out of the gtube if you vent it). We had celebrated too soon. After calling her dietitian she confirmed that Nati wasn’t tolerating her feeds, and we should slow the rate down, waayyyy down. So that’s what we did, all the way down to 75mls!!! So Natalia was taking almost 2 hrs to finish her daily feedings. We are SLOWLY bringing the rate back up, and after 2 weeks we’re at a 100mls/hr rate, this rate seems to be working well for her, so we’re letting her stick to it for a while before we try to up the rate again. What’s important is that she’s getting the food she needs with the least discomfort.

I'm not counting my chickens before they hatch again...

Comunication Update

Today we went to Speech Screening. We had an appointment with a very kind and professional speech pathologist this morning to set out a game plan regarding Natalia’s communication development.

2 weeks ago, when we had her 1 year developmental evaluation, she was at a 3 month level in her communication skills, so I wasn’t sure what to expect. Let me say this: Nati gets her point across with Aaa’s in many intonations and I certainly understand her. But now we are going to start coaching her to use some consonants, i.e.: Babababa, Dadadada, Mamamama, Tatatata… you get the picture. We’re supposed to make these noises very interesting and look at her directly to get her attention; I prefer to talk to her with real words and must confess I feel a little silly doing this but suppose that I’ll get used to it. Our goal is to get her to respond to us after a pause.

As we suspected, Nati's not going to start speech therapy yet, but will be having follow-ups with the speech pathologist every 3 months to evaluate her communication skills and be able to start speech therapy as soon as she is ready.

I asked the speech pathologist for tips for raising a bilingual baby, she had some interesting things to say: Babies relate language with people, so as long as the same person ALWAYS talk to her in the same language her brain can sort out that info and learn to speak and understand both languages. Now this is very important to Natalia because our home is bilingual and we would like her to understand both languages. Between her caretakers, friends and family and media she’s bombarded with both English and Spanish, so now I plan to talk to all the bilingual speakers and ask them to choose: English or Spanish, but stick with it. Hope that helps Nati in the long run….

Here's Grandpa using Natalia's favorite kind of non verbal comunication: goofing around.