Con Santo y Seña

The beach: friend or foe?

2008-06-25T13:23:00.000-07:00

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

2008-06-19T17:08:00.000-07:00

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

2008-06-11T00:01:00.000-07:00

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

2008-05-27T22:20:00.000-07:00

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

2008-04-21T21:58:00.000-07:00

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

2008-04-12T23:18:00.000-07:00

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

2008-03-31T17:47:00.000-07:00

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

2008-03-06T13:53:00.000-08:00

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

2008-02-28T22:56:00.000-08:00

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

2008-02-25T20:22:00.000-08:00

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

2008-02-24T22:06:00.000-08:00

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

2008-02-20T14:27:00.000-08:00

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

2008-01-28T22:08:00.000-08:00

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

2008-01-14T23:17:00.000-08:00

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

2008-01-12T19:51:00.000-08:00

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

2008-01-07T22:17:00.000-08:00

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!

In a Nutshell

2007-12-28T22:40:00.000-08:00

It’s been quite a bit since I’ve posted and so much has been going on, I’ll try my best to update you.

PART 1

Late November Natalia was doing awesome, she was mastering sitting w/o support, and this was her favorite activity: Mirror play!!!

Then suddenly one day she stopped tolerating her feeds, I slowed her rate down all the way to 40 /hr but she still has ghastly stomach cramps and seemed to be producing A LOT more gas than usual. She would scream in pain and jerk all around, these fits lasted about 40 minutes and I believe that she just got so tired she slept even with the pain.

After one day of this she got a slight fever, I called her Ped and she told me to go to the ER just to be sure. And, as Murphy ’s Law is, Natalia was fine during the ER stay. She was even LAUGHING!!! I couldn’t belive it. We were there for around 5 hrs and they finally decided to discharge us, I was so frustrated because I knew that she wasn’t all well. When the discharge papers arrived I started to dress Naty to go home before I signed them. And then Natalia started having a fit. I mean, it took 2 nurses to hold her down and she’s tiny!!. Thankfully one of the Doctors was there and saw just how terrible her pain was, they admitted her immediately.

Our hospital stay lasted 1 week; she got better very slowly because this time nobody could, by ANY means, get a line in her tiny veins. All her meds were via gtube. She was very weak but finally after 4 days her blood culture came back negative so the game plan changed and they stared weaning her back to Nutren Jr.. that took another 3 days. In the end we were discharged with her feedings at a very slow rate, no solids and a case of c-diff.

We had her 15 month well check 1 day after her discharge: 14.7 pounds and 26 inches. This puts her well above the 50th% in the cdls growths charts.

We also had an appointment with her GI doctor, who was happy with Natalia’s recovery but still ordered an upper GI and a swallow test just to double check that her Fundoplacation is holding up consistently. I’m glad she’s having those studies done again since I know how important gastric & swallow issues are with CDLS. These are going to be in Jan 08.

A week after she was discharged we also had an appointment scheduled with the pulmonologist to try to get the synagis shot for her.. By then Natalia had the sniffles an a slight cough. Everything went great with the pulmonologist, she said her lungs look great but still authorized the synagis. When we asked about the cough she said it was just that: a cough. And just as things usually go: the day after that appointment Natalia started to have this whooping cough that made her cry every single time. This lasted another week, and is finally dying down. She still has a cough, but definitely the worse is over. We can finally both sleep. :)

PART 2

MERRY CHRISTMAS!!!

Both my brother and sister came to visit for the holidays. We seldom see each other since one lives in NY and the other lives in Wisconsin. Their presence made this holiday very special. My brother stayed only for a week, he left just before Christmas. I'm glad he and Gaby (his wife) had the chance to get to know Natalia. We're a pretty close knit family and if there is something I would love is for my brother ans sister to know just how lovable and teriffic my baby girl is.

This is my brother Elias and his wife Gaby with Naty in her PJ's

My sister is still here with her family, she has adorable twin 4 yr olds who are pure dynamite! They are tons of fun. They love to play and cuddle with Natalia, and she enjoys the atention. I think it's time to think about giving Naty a brother or sister, she enjoys other kids company alot!

This was Christmas dinner with my parents, my sister Delia with her husband Jafet.

Chrismas morning was a whirl, imagine two 4year old opening present and jumping all around, Natalia jus took it all in.

Then it was time for her to open her presents, I belive she loved them!!

Hope you all had a teriffic Christmas!!!

We're back!

2007-12-11T20:01:00.000-08:00

Well, finally life is begginning to be back to normal. Natalia spent a week in the hospital :( she had a stomach infection. I first noticed her breath started smelling funky, a day after that she started gagging at every meal, and I knew she had some kind of stomach issue because she stopped eating her solids. After a day of gagging and very scary episodes took her to the ER, which means, by my experience, that she is automatically admited. The doctors tend to take everything with Naty with the utmost care because of her medical history: cardiac arrest, pneumonia, c-diff, etc etc.
Juat wanted to touch base with the blog, and I'll soon post some pictures and talk more about this. Darn! i don't even have time to peek at my favorite blogs!
byebye.

ENT & Thanksgiving

2007-11-22T21:23:00.000-08:00

Yesterday we had an early ENT appointment to rule out fluid in Natalia's ears. She has another ABR (hearing test) next Dec 3rd after the first time we were sent back and the second one that was canceled because o fluid in her ear. So we are good to go... no more fluid in her ears!!! Now we have to keep her completely sniffle-free until after the ABR.
Natalia was in an excelent mood, "talking" all the way home. When we got home she became vey entertained with her activity block (thanks Clari!). I'm thrilled that she's having fun with it now, she feels like such a big girl when she's sitting alone playing.

We are planning on having a quiet Thanksgiving at home. But that's no excuse not to dress up... Happy Thanksgiving everyone!

Just us girls

2007-11-17T22:58:00.000-08:00

Today Natalia and I had a relaxing, mellow day. We're home alone until tomorrow so we made the best of our quality time. During week days I see Nati just a few hours a day because of work so I miss her daily rutine. But today, even though we didn't leave the house, it was great to have her all to myself.

First we watched Baby Einstein videos

I'm soooo proud, she's doing so well with her sitting

aaaaahhhhhh.....

an early dinner, yummy!

...it's all in a day's work!

Taaa Daaa!!!

2007-11-15T21:56:00.000-08:00

I'm thrilled, after almost 2 months we FINALLY have a new camera!! Here are the first pictures, don't expect too much, it was late but I couldn't wait to try out my new toy. : )

This is Natalia's "I don't care if I have crazy hair, don't brush my hair" hair.
I know, this crib would probably be banned for overstimulation, but Natalia likes to have variety, and I'd do anything to get her to fall asleep late in the evening.

I'm planning a fotoshoot this weekend, I'll post them by Tuesday. Have a great weekend!!

Some old, some new

2007-11-04T22:01:00.000-08:00

Good news from Amazon: I just got my refund in so we'll be getting a new camera any time soon.I really want to share her pumpkin pictures but I haven't received the pictures from my friends who're supposed to send them (hint hint). Here are some pictures from last year. I'm glad this year Nati did enjoy herself, mabey I was able to erase last years traumatic Halloween experience...

Everything started ok, she was placidly sleeping until...

Mom decided it was time to dress up as a WILD CAT (costume courtesy of Aunt Delia).

Then all hell broke loose!!

Here's a closer look, this 2 month old was WAILING!!

Not even her friends could make her stop

OFCOURSE!!! She hates hats! After we took her wild cat ears off she was good to go. And fell sound asleep.

Can you tell how tiny she was? That costume was size 1 preemie from preemie.com. Take another look at the first picture, that bib was normal size and looks huge on her.

Here are a few pictures my father took of Natalia this weekend, please excuse the poor quality, they're from a phone camera.

Big smile for the camera... I mean phone

Although it seems she's bored out of her wits, take my word for it, she was having a blast. hehe
I think she prefers to pose for a real camera.

Hope your Halloween was fun. ;)

All's clear

2007-10-25T12:32:00.000-07:00

Well, the smoke is almost clear. Thankfully the fire was contained in time and it didn't get to any of my neighborhood's homes. We were lucky, but an estimated 1500 homes did burn down. I feel for these families loss. I feel even more for the family of the 4 people who lost their lives in these fires. I'm so thankful for my county's organization in crisis, San Diego really did come together. Most of all I'm thankful the worse is over.

Natalia literary didn't see the light of day during the worse of the fires. Our home was closed down: No windows were opened, only the garage door was opened as needed to go for supplies. We put wet towels under the door so the smoke couldn't get in and made sure the AC's filter was clean. So many of my friends kids got sick, even though they used face masks so I was extra careful. Our effort payed off because Naty didn't get sick, not even a sniffle. :-)

Oh, and we bought a new camera an Amazon but decided to return it after reading a bunch of bad press on a a faulty lens E18 error that isn't covered by the warranty. Sorry... the pictures are still on standby.

Fire!

2007-10-22T17:23:00.000-07:00

These are scary times. We live very near the Harris Fire in San Diego. A few of the neighboring areas have issued voluntary evacuations. A bunch of roads are closed near our house and the smoke is getting really bad. It really hits you when you start getting phone calls from out of state fiends to ask how you are. We're glued to the TV or in my case the web. These darn Santa Ana winds are moving these fires quickly. I'm hoping for the best... keep us in your prayers.

Less is more

2007-10-20T17:40:00.000-07:00

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

2007-10-14T12:47:00.000-07:00

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...

Owies :(

2007-10-04T13:48:00.000-07:00

Natalia’s geneticist ordered some lab works for a gene study, since we had an ophthalmology appointment Tuesday at 7am, we figured it was a good idea to go ahead and get it over with. The lab was just a few doors down the ophthalmologist’s so we were there at 7:30am sharp.

When I checked in I made sure to tell the receptionist that that Natalia was an extremely hard stick (that’s lab lingo for impossible to find veins to draw blood from J ). I also told her I thought it was a good idea to get the CHET Team, who are like paramedic superstars, to draw the blood since they’re the only ones that have a red light in their equipment that makes Nati’s tiny thin veins visible through her skin (imagine a thick laser pointer), it’s been the only way we’ve been able to put an IV in her when she’s needed it. I think she thought I was an overprotective mom, but humored me by making a few calls. “The CHET team can come at 9:30am”, she said, but I’ll ask our most experienced nurse to take a look, and if he can’t then we can wait for the CHET”.

20 minutes later, in came the Super Nurse and tried to find veins everywhere: arms, wrists, feet, ankles. Natalia hates to be held down and hated even more having tight rubber bands on her arms and legs so there was a bit of drama. And, you guessed it, no veins! That nurse called another, and another, they all seemed pretty amazed that there was not a vein in sight. So with a big I TOLD YOU SO face we left the Lab to wait for the CHET Team in the Hospital’s cafeteria.

Two CHET Team members arrived at 10am and since we only needed 3 cc's of blood to be able to have the study done they thought it was going to be a piece of cake… Nati had something else planned.

To make a long story short: after 30 minutes, 4 unsuccessful sticks and one exhausted baby girl, they only had 3/4^th of a cc. At 10:45 they called it an unsuccessful mission, a first for both CHET members… I think it hurt their superstar ego's.

Now I have to regroup with our genetics doctor since we really want to have the study done. Although I think it’s a good idea to wait till Natalia is bigger so her muscle tone is better and her veins don’t play hide and seek.

PS. The Ophthalmologist said Natalia’s eyes are perfect and her vision is exactly where it has to be. Yayyy!!

Comunication Update

2007-09-27T21:37:00.000-07:00

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.

Finally the ABR!

2007-09-23T08:45:00.000-07:00

After the BAER mishap last Monday, I was able to get it rescheduled to Friday (thanks to someone kind enough to cancel last minute and my ability to ring Speech and Hearing phone's off the hook!!) This time I followed the indications to a dime, well, as best I could. Imagine trying to keep a 1 year old awake till 12 am when her bed time is usually at 9pm . We tried everything: singing, clapping, tumbling, and when all else failed we even danced... I know, we are the biggest goof balls but hey, whatever works. It worked till 11:30pm.

Notice Dad's playful mood and Natalia's "whatever" attitude.

It was dad's job to keep Nati up till 12, I went of to bed at 10:45pm. But I was in charge of waking up Natalia at 4am. I must confess I cheated, I woke her up at 4:30 then let her take a itti bitti nap from 5:30 to 6am while I showered.

She still wasn't too happy when we were off to Children's Hospital at 7am for check in at 8am.

Natalia fell asleep as soon as the light was out... she even snored! The test went great, we had a SUPER audiologist assigned for our abr. She told us step by step what she was testing. After the BAER was done (it took around 25 mins) and evaluating the results she decided that she was going to test deeper and did an ASSR which determines exactly what frequencies are the ones with difficulty hearing and helps the audiologist program the hearing aids correctly.

What's the verdict? Mild to moderate flat hearing loss with a score of 40 on the left and 45 on the right ear. So this means that Natalia is off 20 points on normal hearing (normal being 0 to 20; mild is 21 to 45; moderate is 46 to 65 and severe is over 66).

If you want to hear what Natalia hears like check this link
and click the mild hearing loss option.
You'll find easy to understand info on audiograms: something I need to get familiar with...

We were thrilled with the results because 6 month ago Nati was on the moderate to severe level scoring 60 on the left and 65 on the right. So now we are starting the process of getting the hearing aides. We're expecting a call to get her ear impressions any day now. One less thing to do in Nati's "to do" list. ;D

So we celebrated having a tiny pool party... isn't she adorable in hot pink?

My ex taboo

2007-09-19T11:48:00.000-07:00

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.

Optimists Creed

2007-09-17T11:05:00.000-07:00

Today we were sent back from Natalia's BEAR test. It seems someone forgot to give me the complete instructions, and I didn't ask. Since she has had a history of sensitivity to anesthesia everyone is extra careful.The instructions were very specific.
Nati's wasn't supposed to have had food or drink after 12pm. REALITY: She was on her continuous feed till 7am and had pear for breakfast
She also needed to be sleep deprived with only 6 hrs max of sleep and needed to be awake since 4 am. REALITY: She took a nap with dad since 5:30pm and didn't wake up till 5:30am. So we have to reschedule.
After this morning I decided to re-read the optimists creed. I seem to be re-reading this very often lately.. lol!!

PS. I posted this in English since the few people who've read my blog speak English and I haven't told anyone els about it... ;)

Promise Yourself:

To be so strong that nothing can disturb your peace of mind

To talk health, happiness and prosperity to every person you meet.

To make all your friends feel that there is something in them.

To look at the sunny side of everything and make your optimism come true.

To think only of the best, to work only for the best, and to expect only the best.

To be just as enthusiastic about the success of others as you are about your own.

To forget the mistakes of the past and press on to the greater achievements of the future.

To wear a cheerful countenance at all times and give every living creature you meet a smile.

To give so much time to the improvement of yourself that you have no time to criticize others.

To be too large for worry, too noble for anger, too strong for fear, and too happy to permit the presence of trouble.

It can be tough right?

El mejor año de mi vida

2007-09-14T23:02:00.000-07:00

Para los que no lo han visto...
Hace un año mi vida parecía incierta y gris, ¿como iba yo a saber lo feliz que estaría un año despues? Pero lo digo de corazón: este ha sido el mejor año de mi vida, no cambiaría ni un segundo.

¡¡ Cumple un año de Natalia !!

Un día muy esperado

2007-09-13T17:55:00.000-07:00

Qué creen? Me acabo de dar cuenta que no puedo postear fotos desde el trabajo!!! No me pienso desanimar... solo debo re-organizarme para robarle la computadora a Juan José unos minutos para hacerlo en las noches. SI SE PUEDE!

Ahora para lo importante, avances de Nati: Hoy tuvimos una cita que esperamos 6 meses para conseguir, la cita con la mejor Gastrolinteróloga del Children's Hospital al que llevamos a mi pulguita. Para mi fue un enorme logro conseguirlo. Fuí la pero pesadilla de la encargada de agendar las citas, con decirles que lo tenía agendado en mi Outlook como cita todos los lunes hablar para ver si había alguna cancelación. Es mas, aveces me emocionaba y hablaba los jueves tambien!!! jejejeje ;) ¡lo que no hace una mamá con una meta fija!

Nos fue excelente mente bien. Le van a cambiar la formula a Nutramin Jr (creo que así se llama) que es una fórmula con más calorías mas adecuada para su edad. Le aumentaron su medicina para su constipación al 8mls al día. ¿alguien sabía que el platano extriñe? duh! (yo no, jejeje)
Pues no mas plátano o manzana por un tiempo. MAS MANGO!!

Mi primera vez

2007-09-11T17:46:00.001-07:00

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 ;)