Showing posts with label Cornelia de Lange. Show all posts
Showing posts with label Cornelia de Lange. Show all posts

6/19/2008

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!!!!


6/11/2008

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!


5/27/2008

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.

4/21/2008

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.








4/12/2008

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:

1/14/2008

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.

1/07/2008

A new year

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!

12/11/2007

We're back!

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.

10/20/2007

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...

10/14/2007

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...

9/27/2007

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.


9/19/2007

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.

9/14/2007

El mejor año de mi vida

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.

View this montage created at One True Media
¡¡ Cumple un año de Natalia !!

9/11/2007

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 ;)