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.

Finally the ABR!

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

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

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

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

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

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 ;)