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.

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.

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:

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!

First Big Project

When I started being a stay at home mom I said I would take a month vacation… guess what? Times up!! Once I got my routine organized I began thinking about what I should do first and came up with 4 projects that really excite me, but my first priority was to schedule every possible future appointment for Natalia. Being used to track people down on the phone, but that only took 2 days of phone calls. So now what?

My second main concern for Natalia is her communication skills (in case you’re wondering her borderline Prolonged QT Syndrome is the first). Natalia is around the 3 to 4 month level in her communication skills, she coos and sometimes screams vowel sounds to get her point across. She still uses primarily the aaaaa’s, no consonants yet. Although most of the time I understand her queues, I can tell there is a level of frustration when there is something I don’t get right away. She’s started to pull her hair softly when this happens, or gets very worked up. Now, there are a few reasons for her to be at the 3 to 4 month stage, one is that she has some hearing impairment. To address this we’re waiting for her tubes to be placed in her ears at the end of March and after that she can have the much waited for BER & ASSR. All this is needed to proceed with hearing aids that will ultimately help her hear well.

Now, I’m not fooling myself, I know all too well that this is no guarantee that Natalia will magically start talking when all this is taken care of since one of the characteristics of Cornelia de Lange syndrome is the absence of words to communicate. But she will have a better chance at understanding her surroundings and I’m sure that will make a huge difference. Fortunately there are other options to help our kids communicate, like sign language. So there is my first big project: I have enrolled in a college course: American Sign Language for Infants and Toddlers, I start the April 1st!!! It’s a 2 hour once a week 3 month course focused on signs that target communication with infants and toddlers with or without hearing and speech impairment. I’m very excited!! It’s been a while since I finished my Master’s so I think I’m quite rusty in the study department. But the level of motivation I feel is almost overwhelming. I can’t wait to start!

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.