This girl!

This girl!

Wednesday, May 15, 2013

Small steps

In the last post I talked about Sophia's communication progress, which continues to amaze me. Today I 'm going to talk about her physical development. Since there's no literature about Sophia's chromosomal disorder, we don't know how far she is going to be able to go. She was born with very low tone muscle so it was hard to know if she was going to sit up (she did!), or kneel to play (she does!),  or pull herself up, (she does!), or if she is going to walk without assistance (almost there!!!)

Sophia has made a slow but steady progress except when she had hip surgeries which have set her back. Two surgeries so far and after each one, she is in a cast for about 4 week and then she wears a brace for another 4. Then, my little girl has to work hard to get back to where she was before the surgery and then she goes a little farther.

Right know she is doing amazing! She is cruising a lot and she is getting more balanced each day. She is using her walker at school and walking holding my hand or the furniture at home. It is so great to see that she wants to get going, she wants to do it, and that is really important. This past weekend she decided she wanted to try going up the stairs and the look on her face when she got to the stair landing was priceless! She was so proud of herself! She climbs the step to get in the living room, or at school she actually climbed into the toy crib to play with the baby dolls (I would've done anything to see that). I am so proud of my girl!

She is doing so well and progressing every day that I am really bummed that her orthopedist told us she needs yet another hip surgery. It seems like the other two didn't work and the ligaments are stretched out and her hip is dislocated again. There are several reasons why I don't want more surgeries:
1. Two surgeries so far, how am I going to know that this one is going to work?
2. I don't want another set back. Not now when she is so mobile and has the drive and desire to walk.
3. She is going to be so heavy in the cast that I don't know how I am going to carry her or hold her if she is upset and needs comfort.
4. She has gotten so used to playing with whatever she wants whenever she wants and I fear that she is going to get so frustrated from being stuck in that cast.
OK, these reasons, while annoying and frustrating, they are doable, right? But this brings me to the final and most important reason:
5. Every time Sophia has a surgery, she has to spend about a week in the hospital due to complications with nausea and oxygen. It seems like the older she is the sicker she gets and the longer it takes her to recover.

I am really puzzled here. If she really needs this surgery so she can continue to make her progress I guess we have to do it but, how is this surgery going to do what the other two didn't? What if it doesn't work? I don't want Sophia to go through all that if it's not going to fix the problem for good. I don't want to see her like this again:

Am I being unreasonable? I am really scared because she is bigger and older and I fear that she is going to get sicker this time, this is major surgery! She would be under the anesthesia for over an hour and the chances that she ends up in the ICU are pretty good. I mean, isn't it all about weighing the benefits and the risks?

One thing I know. As Sophia's parents, Eric and I would make the decision that's best for our daughter like we always do.

1 comment:

  1. Uyyyy Amiga este post si que me ha puesto a pensar en tu capacidad de aguante de entereza y fortaleza.

    Que decir, tantos temores todos ellos con fundamento obviamente, se como debes sentirte a la posibilidad de la frustración que una nueva cirugía traería tanto a ustedes como a Sofía.

    Entiendo tus miedos, tus preguntas, las comparto totalmente y daría mi vida por estar a tu lado y poder abrazarte y decirte que se que ustedes tomaran la decisión adecuada, siempre será así.

    No temas a las decisiones que tomen, por que estas siempre estarán fundamentadas en el amor que tienes por tu bebe.

    Adelante amiga y encomiéndate a lo que creas o en quien creas y ya veras como todo se va solucionando de la mejor manera.

    Te quiero