Sunday, June 28, 2009

My first rainbow....

You can not see this things inside the house! I saw the sun setting, I saw a beautiful rainbow, I heard some thunders, I liked running with really high speed in my stroller and then...Ops...the rain started, but I was already in the car! hi hi hi...let it rain now!

My First Rainbow

My new tube, it is green and I fit in....

We have finally found a tube that I fit in and is light enough to bring it in my room. This way I do not have to move with ventilator and all the equipment inside the house just to do a bath. I can watch cartoons while "swimming".

It seems that the water release my hands...and my legs....check it out:

My new tube, it is green and I fit in.

Wednesday, June 24, 2009

I was thinking today that I should be ready for school

I was thinking today.....Hmmm, usually my mommy is reading me stories, and she can read on and on and on as long as I want to.....and I like to listen, it couldn't be that hard to read them, right? Probably I should try someday? Yes, right, I should......and she also helps me drawing because my hand does not always listen to me...What if my hand would be a lot more easier?...

Some of the activities today ... I should be ready for school!

Tuesday, June 23, 2009

Position, position, position, compensate, limits, limited, limitations

Today, again about positioning....This is important because my muscles are soooo weak and I am forced to stay flat most of the time. This seems (and it is) painful, frustrating and there are a lot of complications coming from this limitation, just to mention some of them: joint contractures, intestinal transit issues, bone density issues, wrong perspective on the world when I am supposed to learn and experience so much about it...and the list can go on and on.

My parents are trying (limited by their knowledge (which is limited :) and not only) to compensate some of these complications. As I do not have a stander, and given the price for a stander I most likely never have one, my Jazz Easys stroller seems to be good for this purpose - with some limitations though:
  • The maximum elevation angle is 45 degree
  • Would be good to have proper trunk, hips support
  • Would be good to have a proper mechanism to keep the knees straight (or almost) and the feet in the right position
But, with all these limitations, I seem to like very much my new position, new perspective and my improvised positioning device and I could stand at 40-45 degrees without problems for more than 30 minutes. Tomorrow again, maybe a little longer and I hope this will improve my life.

Alesia - a new perspective

Alesia - a new perspective - the movie
You will probably notice that I know how to say my name (Ana). There is no trach that can stop me from talking!

Love y'all

Sunday, June 21, 2009

Yet another sunny day outside with mommy and daddy

Do you like my improvised tent?

What about my "love tent"?

That's my girl!
Can somebody please stop me from eating her?

Saturday, June 20, 2009

Wednesday, June 17, 2009

Fun equation today

Fun equation today:

Alesia + swing/mom & dad = fun 4 today

Check out movie below (Note. that I am off the ventilator while in the "swing"):

Swing day!

Friday, June 12, 2009

Good night Sun, please come back tomorrow!

My parents rediscovered my baby car seat that was not really used for its original purpose. It is now very good to keep me in sitting position for couple minutes per day. Only couple of minutes and no longer because I am getting tired pretty quick. We used the "couple minutes" today to watch the sun go down to sleep, to tell him "good night" and we asked him very nice to come back tomorrow because we will want to go outside for a new trip.

Good night Sun! Please come back tomorrow!

Monday, June 8, 2009

Almost flying, almost free and ... happy

We are trying to keep Alesia close to vertical position as much as possible. There are a lot of complication that arise from staying too long in lying position and in the same time we may get a lot of benefits from keeping her in standing position as much. This is not easy because she can not swallow yet and we have to be very careful with the secretions not go on the wrong way while vertical. It would be good to have stander to help with positioning (correct positioning) but...we do not have a company close to us (in Romania) that will sell this equipment and that could give us some advices and the possibility for a trial. While we have access to a lot of presentations and movies and information about this products we do not know how to chose it to be good for Alesia based only on this.

While we are searching for a stander, Alesia is using daddy as a "stander", in several episodes of a couple minutes each with or without ventilator. It is far more fun without ventilator because she can fly around the room .... almost free!!!

Almost flying, almost free and ... happy

Sunday, June 7, 2009

Roses, Botanical Garden and ....Ducks

It was a great sunny and very hot Sunday that called for a walk outdoor . Since we can not go very far from home we went today in our Botanical Garden. We could see a lot of flowers and trees in one place, I couldn't climb on the trees yet but I had a little nap in the middle of a roses field instead.

There was a lot of people visiting the garden today and we haven't been in a such public place since we got the trach and the ventilator. There is such strange feeling when people are looking at you with compassion or simply curiosity and I am thinking for myself .... and now out loud: Alesia will have to be really strong, probably much stronger than us to face this looks later on.

But some of the looks came with funny comments from little visitors refering to our stroller and the ventilator:

"- Dady, Dady look they have a stroller with radio!
- It is not a radio and I told you not to speak that loud....

I will be strong!

Love y'all

Pictures at Botanical Garden