"I can read? yes I can read!"

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

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

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

From ziuaAli2011-5Ani

AAA with a princess outfit 

5 years - I am a big girl now!

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!

"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!

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!

HAPPY 4th BIRTHDAY ALESIA!

LA MULTI ANI ALESIA!

My Wheels, My Student and My Games

...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

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...

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

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

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

Here are THE pictures with my little borther as promised:

First impressions 

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

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

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!

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

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

Bravoooooooo!

AAA