Alesia - my fight for life

Guess who came to visit me today :)

2012-02-06T14:46:00.000-08:00

...Soooo, today mom open the window wiiide and some one came and surprised me with a visit:

Yes! it was the Snow Man itself coming inside to warm a little because outside it too cold even for a snow man

Alesia, Mom and the Snow Man

"I can read? yes I can read!"

2012-01-19T03:13:00.000-08:00

My Dear Friends,

Long time no news, hope you didn't miss me to much! I have been busy learning the alphabet and, yes, now I can read and pronounce, with style :), all the letters from the alphabet. Check this out:

Is this amazing or what?

Much love!
Alesia

M - School

2011-09-21T08:21:00.000-07:00

We have searched for a while for schools where I can go but apparently Mommy - School is the best in town:

I already know how to read "Ana, Tata & Mama"

Countingand after so much math some sport with mr. "Morcovel"

and then again some math ... OMG!

AAA

5 years + 1 day

2011-09-14T07:05:00.000-07:00

... and this is me today, after the party

From ziuaAli2011-5Ani

AAA with a princess outfit

5 years - I am a big girl now!

2011-09-14T01:33:00.000-07:00

Gifts, a lot of people visiting me, then a cake and then again gifts.....do you know why?

Yes it was my 5th birthday! I am a big girl now!

From ziuaAli2011-5Ani

or more pictures in this album:

ziuaAli2011-5Ani

Noi Orizonturi Familia - Thank you!

2011-04-07T15:36:00.000-07:00

"Noi Orizonturi Familia" association has been besides us for a long time now. They have been with us 3 years ago and so we could bring Alesia back home from hospital when we thought we will never be able to buy all the medical equipment required. This year our friends from this association created a special account to collect medical funds for Alesia obtained from 2% of annual income tax (for year 2010). The money collected into this account will be donated to us and will be used for medical necessities and to improve quality of life for Alesia. We thank to all of you that directed their 2% for Alesia already!

"Noi Orizonturi-Familia" is a not-for-profit association in Romania, whose goal is to enhance the quality of life for all members of the community. More about their projects can be found on their website:

http://www.noiorizonturifamilia.ro/

Thank you Christian, Cristina and Noi Orizonturi Familia

Alesia & her family

For those who are missing me!

2011-03-13T12:35:00.000-07:00

I know there has been so much since last post but ... "no news is good news" when you are fighting with SMA monster. Still there are some news, good news:

No.1 The spring is here and this means that soon I will be able to get out of the house. I just have to see something else than movies and computer games and stories and my pink walls around me...

No. 2 Today I have 4 years + 1/2. Please check the photo collage below and notice that I am such a big girl

Alesia today = 4 + 1/2

Love y'all!

Alesia's mom and dad writing here for her until she will learn how to update this blog

I am 4 years old!

2010-09-14T01:02:00.000-07:00

HAPPY 4th BIRTHDAY ALESIA!

LA MULTI ANI ALESIA!

My Wheels, My Student and My Games

2010-02-28T12:35:00.000-08:00

...This is my first power wheelchair . It is yellow, it is Koala Permobile, it is just the size I need it to be and it works fine. Now, you may wonder where is the movie with "my first steps"? The movie is about to be made, hopefully soon, IF I will overcome the following challenges:

No. 0 - Breath while driving I am not strong enough to breath by myself. While on the move usually my LTV ventilator does this for me. Recently my LTV just failed me and I hope it can be repaired soon.

No. 1 - Control the chair. I am not strong enough to move the joystick that is currently mounted on the chair. Need to find an alternate solution to control the chair. If you read this and think about a solution please tell me. Yes, I know it would had be wonderful if we could test the chair before and choose the proper control but unfortunately we do not have this option here where we live: at the end of the world. That's why we bought an used chair from Germany. We are now happy that we have it, happy that is working and we will try to adapt it to my needs

No.3 - Power The batteries are old and it does not power the chair more than 15 minutes

SO, stay tuned for the movie with "my first steps"

Until then I am just hanging out with my little brother and I teach him staff :). I am older and I have so many things to share. For instance I show him how I can play the computer using my tash microlight switch. But for now it only seems to learn how to cry...hmmm....

Alesia teaching her brother about reflection

Have a happy spring all of you!
AAA

Decorating the Christmas Tree from Santa

2009-12-25T11:46:00.000-08:00

I was very very busy because Santa brought me a Christmas tree and I had to decorate it:

Make some planning!

Had to choose the color of the decorations!

Had to carefully place the decorations

To obtain the final product:

All the pictures can be found here!

Merry Christmas /Craciun Fericit!
Alesia and her family

One of those days...

2009-12-17T09:08:00.000-08:00

Instead of preparing for Christmas we had one of those days when all the troubles that can happen are happening. It started in the morning with the first snow from this year, when instead of just enjoying the view with everything white and frozen (the ones that leave in Bucharest know what I mean by "frozen": it is a word that accurate describe car traffic) outside ....

1. The g-tube - a medical equipment inserted in my tummy, that is my only way to eat or drink, decided to pop out. Let me tell you that if this is happening and nobody is noticing quick to insert a new one in place in less than 30 minutes everything will end up with a trip to the hospital, a new surgery and all of this "good staff" that we are trying to stay away and anyway today the traffic is frozen here (no joke or even funny). Lucky us that we had a spare g-tube and we had the courage to insert it. It did not entered easily, but in the end entered and we could inflate the ballon that holds the g-tube inside.....which by the way did not looked symmetrical at all when we tested it prior to insert the tube so we might expect a short life for this g-tube as well. I hope we can buy a new one in the meantime.

then when everything seemed to be back to normal....

2. The fever strikes us. What could it be? It is because the g-tube incident? It is an infection? it is cold or a flu? all of this question contains words that scare us so much....

We are waiting for: some medical analysis results to know what we are dealing ... some white nights not only because of the snow outside....

That day was on Tuesday. Today seems to be so different. The fever is gone and the new g-tube is still in place.

We need your prays and as usual lots of miracles...

AAA

Medical supplies donated to Alesia by BBraun Romania

2009-12-14T08:23:00.000-08:00

The BBraun Romania company did a very generous donation for Alesia in medical supplies for 1 year:

Sterile water - for respiratory humidifier and for suctioning
Hands and surface disinfectant - to keep the viruses and germs away
Syringes used for feeding and medicine
Stoma care products
Sterile and examination gloves

This is very big help for us, are part of the critical products required for daily medical care for Alesia that are not covered by medical insurance (like it is would cover something! ;) ).

Thank you BBraun Romania!

AAA

Meeting my brother for the first time

2009-11-18T04:20:00.000-08:00

Meeting my brother for the first time

He is kind'a cute ....but I am still the cutest in the world, right?

Love y'all

AAA

Pictures with my little brother

2009-11-10T22:39:00.000-08:00

Here are THE pictures with my little borther as promised:

First impressions

The miracle for today: I Have a Brother...SMA free

2009-11-09T02:29:00.000-08:00

Yes, yes my mommy gave birth to my little brother today (9th of November 2009). God listen to our prayers and quickly give us all a blessing every day. Today He gave us an endless joy, hope and power to continue the fight waiting for the next miracle from Him.

The miracle today is that my little brother is healthy is SMA free is handsome, the pregnacy and the birth went smooth, my mommy is fine (and happy) and the miracle happen today when saint Nectarios of Aegina is celebrated. We where asking to saint Nectarios to help us with his prays to God for us and because of that His help came to us so quickly and so wonderful.

This is such a powerfull sign for us from God that He loves us all and we have friends in heaven and we have friends here on earth that love us. God is good and the obstacles that are prepared for us are with a purpose, they exist BECAUSE He love us, and we have the faith that He will never leave us.

Love y'all
Alesia, Mommy Daddy and MIHAI NECTARIE (6.4 pounds of love and pictures to follow up soon (the hospital is in quarantine))

Homework for today: some math and some english

2009-11-04T08:32:00.000-08:00

Since the weather outside is so bad this days we are just staying inside the house and learn counting. I learn counting, mommy learn english and daddy learn now to use the printer :)

Alesia counting to 4 (english only :))

Of course there will be critics saying that the pronunciation is not perfect :). Well, this may be because I am only 3 years old and I have a trach tube in my throat.

I hope we will do another snapshot movie when we reach 99999999999999999 with counting. How do you say this in english anyway?

Love y'all
AAA (and M pending)

Today: 3x Mommy. Happy birthday!

2009-10-18T11:18:00.000-07:00

Happy birthday Mommy!

We love you, We want you to stay strong, we want you to be happy!

Alesia and Daddy and ... (stay tune for the third name in the list ;) )

All pictures from the party today at:

3x Mommy Party

Workout for a 6 Pack Abs

2009-09-27T10:26:00.000-07:00

... While waiting for the miracle to happen and a cure to be found I'm just trying to stay in good shape:

Bravoooooooo!

AAA

Yes: 3 Years Old. Who Would Have Ever Believed?

2009-09-14T14:52:00.000-07:00

13 September is the day of my birth. This year I was able to overcome unbelievable huge obstacles, I survived and most of all I am an unbelievable happy child. I thank and pray God to keep me in His Hands, close to Him and never leave me. I understand that He must have a plan with me and the obstacles that are in front of me or the one that I could overcome with His help are for a better me and a better world.

I thank you all my friends that stand beside me! 3 Years Old - Who Would Have Ever Believed? Some people believed, you believed, and you will help me continue my fight for life and I also know you are all waiting for pictures from my 3th birthday PARTY:

Love y'all
AAA

New stander

2009-09-12T13:36:00.000-07:00

Remember us complaining about not having a supine stander? We have got one from my guardian angel - my prince that is looking at me and sends me help when I needed. Yes it is an angel for me because I never saw him and still he seem to know when I need something and get me out of my needs THANK YOU!

I made a movie with the first day of using it. You can tell that I enjoy it!

We will start to rise the angle progressively and hope that some day will be able to sit up a couple of minutes (even tight up ). Otherwise how am I gonna go to school?

Love y'all

AAA

Returning home from holiday

2009-08-04T12:08:00.000-07:00

I am back home from my "short" visit (2 weeks) to my grandparents. It was nice and most of all it was a real victory for me because I was not really hoped that I will be able to go outside my room and the possibility to go somewhere outside the city seemed not long ago impossible for me. Indeed it was not easy, preparing this trip was pretty much like preparing a trip to the moon, taking all the equipment, backup for equipment, my special special food ... and the list can go on and on filling 2 cars :).

I enjoyed every moment:

Spent time with my little cousin Tudor:

being happy with mommy (and her tummy! ):

and daddy being happy with us:

and .... hiking trials

all the pics here:

....I am now waiting for the next trip. You wanna join me :)?

Love y'all,
AAA

Summer holiday = Grand parents visit

2009-07-30T08:22:00.000-07:00

Probably some of my friends are wondering where am I. Well, I am in holiday, and I am visiting my grandparents. They live outside the city 100 miles from my home. What an adventure to go so far away! But we made it :)
What am I doing? I am doing my walk every day in my grand ma garden, counting the roses that are blossoming each day for me, enjoying the sun and having a good time:

Love y'all
AAA

They deserve a life!

2009-07-09T04:46:00.000-07:00

I am Alesia, I think you know me already: I am fighting for my life, for my each and every breath, remember? and I am 23:50/7 ventilator dependent. Returning home from the hospital once becoming ventilator dependent for people like myself (younger or older) is considered an utopia in my beautiful country: Romania. The main reasons for this may be the poverty, a not ideally organized medical system (if you allow me this expression) that is always blaming the poverty and probably the subject awareness.

The parents or the caregivers once they learn that their child, wife, husband will not be able to breath by them self this practically means in 90% of the cases that they are convicted to live all the remaining life in an hospital ICU, which in my opinion is not the ideal place to spend your childhood.

My parents faced the same concerns 1 year ago when I was in the ICU:

There is not any infrastructure to allow home care for ventilator dependent patients
It is not possible emergency transportation because most of ambulances are not equipped with respiratory ventilators
There is nobody that could (formally) train the caregivers
There is NO help from medical insurance companies to obtain required medical equipment
There is no home-care/nursing service for this type of patients (ventilator dependent)

In this condition there are very few people in this situation could return home.

I want to change this! There are so many children that are waisting their childhood in the hospital. They have done nothing wrong and they are fighting (the same as myself) for their each and every breath.

They deserve a LIFE!

My daddy had the oportunity to present my story as one of the only 2 families in Bucharest that could have a life outside Hospital ICU for a child with my condition. The presentation was made in front of some very well known medical doctors and representative from national medical insurance company.

Conclusions:

Everybody was impresed by our story
We have to continue to rise awarrenes about this subject
We will have to create a well documented project to present as many cases as possible
We will have to include in this project the economical advantages for this type of approach - Home care
I hope I will have support from all medical doctors to obtain this information
I hope I am not to small to succed

Here is the prsentation made:

or a link to the Romanian version

Love y'all

AAA

Nice walk, not to far from home

2009-07-06T11:44:00.000-07:00

I just can wait each and every weekend because I know that mommy and daddy are taking me out in the sun....not to far from home because we are still afraid that something may go wrong with all the equipment, and moreover I like the trees and the flowers and the people from UPB campus where my mommy is working.

Happy 4th US friends!

AAA

My first rainbow....

2009-06-28T14:51:00.000-07:00

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