Doing just fine

It’s been one week since I posted for the first time and I have to say that it has been amazing. You never imagine how much love you can receive through messages, I never really post much on facebook or anything like that, just a picture now and then, so I actually surprised myself posting this about Isa. Writing has always been my way to feel better, but this is the first time I share something I write, it also makes it a little bit more tricky if you do it in another language. But I have to say that it feels good.

Today Isa had an appointment with her Neurologist Eva, it’s been a while since we were with her, since February and it feels good to know that everything is going good. Her epilepsy seems finally under control, a few weeks ago we increased her doses at night with a 1/4 more of Topimax because we had been noticing these moments when she seemed to been having absence seizures, a short period of time when she would seem to be “gone” and then she would continue normally, having a kid with epilepsy makes every little thing out of the ordinary to be double checked, if she blinks in a special way, or moves her head in another way or anything, you can see Nicklas and I staring at her, we have to make sure that she’s not having a tiny seizure or anything else, but now after increasing her dose she seems to be doing fine again. It was also good to see that she is finally gaining weight again, ever since she started with the first medication she lost her appetite and it has been really hard to make her eat, she had been on the same weight for 4 months, but now she finally put on 500 grams. I finally understand why mothers get so happy when they see their kids eat, she puts a smile on my face every time she finishes a plate.

We also asked Eva for Isa’s medical diary and pictures of her MRI, so soon they are going to mail it to us, after all the talk and questions she let us go saying that everything looks good. We left her office and I felt like crying, I always get that feeling inside me when I leave the hospital from any of Isa’s appointments, I think Nicklas saw it right away, so he hugged me and ask if everything was ok, when we were in the car I smiled to myself thinking how good it feels to leave the hospital without bad news, how good it feels to leave the hospital and have heard that she’s doing just fine. I took a deep breath and smiled again.

Next Wednesday we are going to Move and walk for her physical therapy is either that or Habilitering, because we have double booked two appointments on the same day, I’m trying to fix that right now.

She feels strong this week, she’s getting really good at standing by herself and this week she seems to have improved a lot with her left hand, she’s opening it more to hold small things like spoons, we always offer everything first to her left hand but she quickly grabs with her right, but now it seems that she is starting to use the left more and these small improvements makes us the happiest.

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My friend Carlos sent me a poem after I shared this blog on my facebook page last week …here it is


Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.


6 thoughts on “Doing just fine

  1. Italy is overrated. Me encantó. No dejes de escribir Liz, es la mejor forma de ver que los avances de nuestros peques por más chiquitos que parezcan son enormes de una semana a otra. Un abrazo.

  2. I know exactly what you mean, mi bebita tambien tiene epilepsia y esta controlada con kepra. Pero parece que tenemos que subirle la dosis porque le estan dando unos episodios raros ultimamente. Me encanta como escribes.

    • Isa empezó con Kepra pero no le sirvio, aparte estaba de muy mal humor todo el tiempo con 😦 se volvió un pequeño demonio con Kepra. Con Topimax vimos resultados buenos, pero lo malo es que le quita el hambre, ahora solo estan esperando a que suba un poco de peso para poder subirle un poco la dosis si es que los episodios vuelven… Hay que bien se siente escribirle a alguien que entiende de que hablas 🙂

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