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!!

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.