Wednesday, December 31, 2008

Looking back

What to wish a HAPPY NEW YEAR for all the peoples that gave us hope, inspiration and a lot of help during 2008. 

Has been a difficult year and now looking back I think it is a real miracle to have Alesia with us still. We are grateful, we pray and hope for a miracle this year for her and for all the children that have to fight for their every breath. 

HAPPY NEW YEAR!


Saturday, December 27, 2008

Singing with princess Fiona

Check out in the movie below a morning song together with princess Fiona from my favorite movie Shrek:


Happy Holidays  for everyone!
AAA

Saturday, December 13, 2008

Helping mommy - the movie



Helping mommy - the movie

Friday, December 12, 2008

Headrawing

There is some time since I lost the power in my hand and I can not hold even a pen anymore, can not draw, can not do a lot of things....sad... I know....

Do you think this will stop me......? 

Wrong!

Today I have got a new "toy" that helps me to express myself again...A very high tech interface is "watching" my head movements and based on this I can control the computer. It is called SmartNav. My father always says that I am very, very, veeery smart (and too cute) and guess what! I was able to understand what is all about in the first place and I could sketch up some lines and   circles using a simple drawing program and minimal help from daddy.  

Check this out below:


 

Sunday, November 30, 2008

Second step to freedom.

Every day is a miracle for us and while we are waiting for the big miracle from God to happen for Alesia we set our next goal to be able to take her out of her room again and why not outdoor someday.  First step was made and we got with help from some good people a special need stroller.

As medical insurances in our country does not support any of our expenses with needed equipment,  we could hardly imagine, in the beginning of our journey, that we will be able to get all these equipment. This was possible mainly due to help received from people with good heart and some time the help received is beyond any of our expectation.  I do not know how I will ever be able to thank enough for this help.

While we were struggling to take the next step and get a portable ventilator for Alesia (which, by the way, is very expensive device)  we received one as gift from a very special person, a real Prince. Since he found about Alesia and her fight for life was always besides us and is supporting us in many ways, giving us strength and hope that this fight is not in vain. In his silent kindness  taught us  that God is working in, through and with peoples. 

How we will ever be able to thank for all this help and support? do not know the right answer now but this question open another question also: How will we ever be able to thank God for this life, for the freedom and trust that He is giving us? We can not, but for sure we can live our live being grateful for all we receive from Him every second and every breath. 

Therefore, until the Miracle will happen Alesia will use the ventilator received - a Pulmonetic LTV1000 - that will be adapted to the stroller Alesia has. The ventilator is a very portable and this mainly due to its shape and robust construction. It is extremely used for this purposes by peoples that require long term ventilation  and that does not want to consider this as a limitation.  In addition, this will also help us being more relive because we always have a backup for such important equipment. 

Hope that soon we will be able to post pictures with Alesia outside her room. :)


Saturday, November 15, 2008

Helping mommy!

You have to see this! I have learned, and now I am helping mommy to feed myself. You can see in the pictures below who is holding the syringe! yes, yes it is me, mommy is only acting that is feeding me.




Tuesday, November 11, 2008

Some issues around the trach: solved!

Some panic for my parent couple days ago while changing the trach bandage when a little blood was seen on it. So many worries and almost ready to go to the hospital but we did not, we cleaned very well the spot and we used some more "Betadina" than usual on the area. We checked the spot next day and we noticed that is getting better and next day even better.

My doctor said that this can happen because of the friction between trach and skin. A special treatment will be applied on area when trach tube will be changed next time. I would place some pictures before and after but I think is better if I do not (it may scare you).... It is very hard... every second something can go wrong and we might not know what to do, how to act on the situation....but this is the only way, it is our way and we have to take it. The reward for my parents is the fact that I am happy against all the odds and the difficulties that I am fighting with. I pray that God will keep us away from dificult moments and will do a miracle for me and for all children that are suffering and fighting for their life each breath.

Monday, October 27, 2008

CoughAssist as Royal Gift.

I added in my arsenal a new "weapon" that will help me to fight the disease. It is called CoughAssist and it proved to be a useful machine for other children that are fighting with SMA. CoughAssist clears secretions by gradually applying a positive pressure to the airway, then rapidly shifting to negative pressure. The rapid shift in pressure produces a high expiratory flow, simulating a natural cough.

Because of my muscle weakness I can not cough efficiently. It will surely help me a lot and hopefully keep me away from being hospitalized. I should have it earlier but my parents did not afford to buy it and so I received today as gift from a man with good heart...from a real Prince.

Doctor Cristian Tanase from Grigore Alexandrescu hospital came today and thought me how to use the Cough Assist...well actually trained my parents how to use it! I was scared that it will hearth me but it did not. I did not felt any pain and obviously I was able to clear more efficiently the airway paths.

Although it is so useful and used equipment, it is a pretty new device in my country (I think is the first). Maybe it will be useful in our hospitals as well! Maybe it would be good it the expenses for it would be supported by medical insurance for patient like me!

Saturday, October 25, 2008

First step to mobility and a + for my comfort


With the help from people with good heart I have now a new stroller and a laying system special designed for special children that have to fight this unfair war with a cruel and sadistic disease. The mattress seems to be very good for me and so...I fall a sleep in minutes after m&d put me on top of it....and I slept deep for several hours without even ask to be turn over.
The stroller will give me some mobility to move inside the house and hopefully if I will gain more power I will be able to go outside someday. For now I am happy that I can move few meters from my bed.

THANK YOU for all the good people that helped my parents to buy this equipment with money, advices and logistic (it is not available in my country)
AAA

Thursday, October 23, 2008

2 times close to ..."the END" today

Have you ever been in your entire life with the resources close to 0 (zero) and with the stress close to maxim? I think you have been.... I've been also, many times,... including today. There was a power outage for 5 hours and half and all our backup resources where close to 0 and our nerves close to 100% limit.  

Therefore, we discovered that in the current configuration the autonomy of our critical equipment is: 3.5 hours ventilator battery + 2 hours UPS. (5 hours and half instead of 8 hours as we originally estimated from the product specifications). We definitely  need to find a solution that will give as a longer autonomy.

Luckily the outage was during the daytime and we could get help from friends that brought us additional UPSs and batteries and power was restored in time and I could breath again...

Therefore my life is not only figuratively  hang on a tiny wire it is actually also hanging on a wire connected to power source.



Tuesday, October 14, 2008

7 minutes without ventilator because I was dancing :)

Yes it is true, it is a "world record" for me, today I was able to stay away from the ventilator for 7 minutes, and this is not all! During this time I was dancing with my mom and dad. I loved so much!I wish I would never return to my bed...





This was a Miracle....maybe I am getting stronger...maybe some day I will be able to stay up right and hold my mom in my arms...miracles happen every day ...all kind of miracles

Love y'all
AAA

Sunday, October 5, 2008

In the water again....I'm loven' it!

There is a long period of time since I could not do a bath in the bath tube. During this time I was washed like a medieval princes using an wet towel due to several restriction imposed for my safety. But today I was finally able to stay in the tube and ENJOY warm water and toys floating around me. This may seem trivial, but in my case it is actually an adventure and there are a lot of things that needs to be taken care of:

1. NO drop of water to get inside the trach
2. Do Not slip into the tube
3. Very careful with maneuvers of moving in and out of the tube
4. Reconnecting to the breathing circuit
5. Positioning
6. Very careful with the secretion not to go on the path airway
7. Careful with the g-tube (not sure if it is ok to go under water with it)

Anyway I loved it and I was actually crying when I had to go out because I wanted to stay more. My mummy had to promise that I will do another bath today after I eat just to make me stop crying. And you know what else I discovered? The bath tube that I was using 4 months ago is way to small for me now. Of course you realize that this means I have grown up! I definitely need a new bath tube.




In the water again....I'm loven' it!

Saturday, September 13, 2008

2 Years... and counting!


Let me tell you what happened to me this morning when I woke up: There where 2 big beautiful and happy balloons right in in front of me and they where saying:

- "Good morning Alesia!" we are your 2 little years that lived with you since you where born. I am 2006/7 and, this is my small brother 2007/8 and we want to introduce to you our smallest brother 2008/9. And then they start singing: Happy birthday to you, Happy birthday to youuuuuuuu......

And in this time I was looking on the ceiling and I saw that actually all the ceiling was full of happy balloons! Wow, I'm wondering if all this balloons are brothers of my 3 friend balloons that woke me up this morning!

Later in the day I found out that the balloons where send by a friend that wanted to make a beautiful surprise. Thank you!

Check out some pictures from my birthday! How do I look?



2 Years ... and counting!

Friday, September 12, 2008

Special needs = Special help = BGS Medical Division

What if I will ever need to go very quick to the hospital? What if I will ever need to go somewhere for a treatment? How am I gonna do this with all the traffic in Bucharest and all the special condition I require for transport? Big problem! .... but it has a solution:

I received today a special offer from BGS Medical Division: They will ensure my transportation for treatment or emergency without charging my parents for this! A very special gift and help that makes me feel a lot safer!


Thank you BGS Medical Divsion for help

Thursday, September 11, 2008

Can you see me? I am right here under big pink ballon

Probably you are wondering what have I done or where have I been for such long period of time...well check out the video below, I was hiding under big pink balloon :)

I just kidding, I was home all the time spending good time and preparing for the upcoming event in my life....Do you know which is it?

There are 2 days remaining, and I am going to celebrate my 2nd birthday! Hooray I am almost there!



Can you find me?

Sunday, August 31, 2008

Will I ever be able to go outdoor?


Another hot day outside (and inside) today, and as we do not dare yet to go for a little trip outdoor we set up a little artificial forest and a very tiny super small swimming pool inside my room...I like it, and I hope that some day (soon) I will be able to do a trip outside, see and touch flowers, trees, clouds...sun.

Until then I'm enjoying my staying at home and I'm grateful that nothing wrong has happened. My parents learned how to take care of my trach, how to change the bandage, the trach holder and maybe it does not sound like a big deal but believe me it is!





Picnic :) ?

Thursday, August 21, 2008

Wow....10 days already?

Wow....There are 10 days already since home and mommy & daddy are very happy that they where able to make it so far with my care giving. My room is already filled with toys, all the stories new and old have been read 1001 times and most of all I am happy, I enjoy every second and I'm starting to learn new things. I'm so afraid for anything to change, I hope not and if it does, to change in good for me.

Yesterday we made a short movie that you have to see it! My mommy teaches me how to take care of my skin and you will probably see that there are some minor improved with the strength of my arms and legs.

Love y'all
AAA






Sunday, August 17, 2008

It is Sunday, I'm Home so I'm sleeping late!

It is Sunday morning and I am sleeping late , it is past 11 and I'm still sleeping. I already skipped the morning meal at 7, my 11 meal is due but my daddy does not want to wake me up because I'm sleeping so peaceful and deep...but wait!...

...good morning sunshine!....my daddy just started to write this post and I woke up...I did not cried, I smiled instead, asked for the toys around me, called my mommy, asked for water...I'm feeling again home! It is the beginning of a wonderful Sunday that was possible because of all the prayers, support and help that I received from all around the world.

Love y'all
AAA

Wednesday, August 13, 2008

First day at home!

With a lot of help from Grigore Alexandrescu Hospital doctors, nurses and from you, today I was transferred .....at home, in my room which is now a small ICU with a lot of devices that work around the clock to help me with breathing.

I was so happy, so many new things to see, so many old things that I missed to remember and most of all mommy and daddy here with me all the time....well, I guess they do not yet know well how to react in all the situation but for the first day I think they did well.




Alesia is back Home!


AAA

Friday, August 1, 2008

My bracelets, my smile, soon hospital bye, bye :)

Nothing is really new about me, just wanted you to see the pictures taken today where you will sure notice my bracelets and my red ring that nurse Dana gave me yesterday, or the day before yesterday. Please, please tell me that I'm cute!
And you know why I'm smiling like that? Because the doctors said that if everything is alright I will go at home next week.


Love y'all and thank you for all the help sent to my parents for me
AAA





My bracelets, my smile, soon hospital bye, bye!

Monday, July 28, 2008

I've got a new nose - it is called MR850

A new equipment was added today into the circuit a respiratory humidifier that plays the role of nose. Let me explain: Because I have to be ventilated through tracheotomy, my natural cute nose is bypassed and so the air does not pass anymore over a warm, ciliated mucous layer before passing to the nasopharynx. If the humidifier is not present in the circuit the air that is delivered into my lungs becomes dry and sometime not warm enough. This is not causing only my discomfort but it is also affects the properties of my path airways and will cause dehydration . That's why it is needed a respiratory humidifier for me now. The one that was choose for me is called MR850 from Fisher Paykel

Previously I had a humidifier connected to the ventilator in the hospital. One difference is that this one is now connected to the ventilator that I will use at home (hopefully soon) and another difference is that the new humidifier have some advantages on the existing one:
  • Control the quality of the air delivered to the patient: temperature and moisture
  • Automatic feeding with water from an external source
  • Alarms if anything goes wrong with regards to the quality of air or with the humidifier
I hope this new humidifier will increase the quality of my life until the air will flow again through my cute little nose.

Thank you RadiusMed for the special price offered for me and thank you Oxygenplus for helping me with connecting the humidifier to the respiratory circuit.

Love y'all
AAA

Sunday, July 27, 2008

110 minutes Sunday

Where are the good old Sundays when both mommy and daddy could spend all day with me? Well....I do not know, but I hope they will return.

What can we do in this days Sundays? We can sing, we can dance a little, I can learn mommy where is my leg, where are my arms, where are my eyes...I can talk with my birdie and tell her that I like candies and then time flies and the 110 minutes Sunday is over, my mommy have to leave!

Check out sequences from the 110 minutes Sunday today and please forgive my hairstylist (daddy) he was not allowed to get in today and I may not look too good because of that.






Love you all!
Alesia

Friday, July 18, 2008

Preparations to Return Home - Step 1

We slowly started to prepare the transition from hospital to home. First step is to validate the setup that will help Alesia with breathing at home. The company that sells the ventilator in Romania - OxygenPlus - had the generosity to give us a setup with CARAT I Plus and the Oxygen Concentrator for tests in hospital before purchasing it. This is a very important help because it give us the possibility to test the compatibility, make sure that the device is easy to operate and it has all the features required for assisting Alesia with breathing. We learned a lot today about how to setup the equipment and which are Alesia needs in terms of ventilation.

Alesia stayed 12 Hours on the new ventilator and everything went fine. During this time she was happy and the only problem was that her pulse increased a little. Over night she was put back on the ventilator in ICU because the humidifier could not be adapted to the new ventilator.

The tests with Carat I Plus ventilator will continue in the next days and hopefully it will be a good choice for Alesia until a miracle will happen and she will not need the ventilator.

Saturday, July 12, 2008

Sad, discouraged and ... in prison

Disclaimer: The people in this post that are referred as "not having respect for life" does NOT refer to the medical staff of Grigore Alexandrescu Hospital. The medical staff from GA are referred as the ones that with their creativity can not compensate the " poverty, the indifference and in some cases the lack of hearth and respect for life of some other people" - people that created and maintain the medical infrastructure weak (almost as weak as Alesia) and in poverty in the majority of the hospitals in our country. Sorry for the confusion created!

Today I am a little bit sad and discouraged. I found out that love, devotion and even creativity of a few people can not compensate at all the poverty, the indifference and in some cases the lack of hearth and respect for life of some other people. I do not want to judge nobody because I am so very small and I am not in the position to judge. I just wanted to cry a little, and tell you that when I thought I started to gain the happiness back into my life and see a road to a better life in front of me, an old rule started to be strictly enforced. Another piece from my happiness has been taken away, and I have been sent to a maximum security prison....What have I done?

I will not refer to specific person or places because I think I might heart myself additionally One question I have for you though, Please tell my what do you think? Is it something good that is coming out from the following rule: I am only allowed for 15 minutes per day to talk with my parents (and this is only with my mommy)?

No pictures today because I am sad, I cried a lot and do not want you to see me like this.


Love you all!
AAA

Wednesday, July 9, 2008

Words are starting to come out again....

After more than 1 month of silence I can talk again. What a joy today.....words are coming out again and slowly I'm beginning to express myself not only with my eyes but also using my voice. It is still very hard because I need to do an extra effort to make the air escape the trach and pass through the vocal cords, and there are other obstacles as well, but as you know I am not giving up. I hope some day I will be able to read stories to other children as my mommy does every day.

Check my video below and see that I can kiss my mommy, I can show her where is the door, where is the window ...and I can say: "Tata"




First words after a long silence



AAA

Thursday, July 3, 2008

Medical Ventilator - The main equipment: How are we choosing it?

This proves to be a delicate task and there are some important aspects that needs to be taken into account and that probably will matter later on, for my quality of life. I did not knew in the beginning to much about ventilation, but I started to learn and with help from my doctors and cooperation from distributors I hope will be able to pick the right one

You are probably wondering what is a ventilator ?

"A ventilator, also known as a respirator, is the equipment used to mechanically assist breathing by delivering air to the lungs. Many people may be familiar with ventilators in the hospital setting, such as the ICU, where large complex acute care ventilators are used. The ventilators used in the home are small, lightweight and portable; they can be mounted on wheelchairs or carts or put on a bedside stand. Most of these operate on household electric current – some have internal batteries – and can be operated with external batteries. It is advisable to have a backup battery or even a generator readily available in case of power outages or emergencies."

Things to consider when choosing the ventilator Alesia:
  • Needs have all the ventilation mode I will need: Control, Assist/Control, SIMV, CPAP, BIPAP, NPPV
  • Needs to know several breath types: Volume Control, Pressure Control, Pressure Support, Spontaneous
  • Need to be able to provide the required parameters for my weight and age (tidal volume starting with 50ml, appropriate pressure)
  • Due to the small air volumes have to be possible to connect to small diameter tubes
  • Have to be small and portable enough NOT to keep me in one room because I'm hopping that I will be able to move around the house some day.
  • Need to have technical assistance available for failure cases and periodic inspections
  • Need to have easy available the consumables (tubes, filters)
  • Have to be quiet
  • Have to be affordable for my parents, although A LOT of help has been already received from friends - THANK YOU!
For now we are considering the following 3 options:
Hope we will choose the right one for me!

AAA

My first haircut in the ICU

I can not go to a hair stylist yet :), however today my personal hairstylist (a.k.a my mother) came with all her tools and gave me a new haircut and look.... but, hey do not worry, you will still recognize me by my smile and eyes:





Alesia and her new haircut!


Love you all,
AAA

Saturday, June 28, 2008

Alesia seems to take very well the trach and the g-tube and she seems very happy that she does not need to have tubes in her mouth and nose.
She is recovering very well and the possibility to return home is closer and closer to become a reality. Some preparation are necessary though because it seems that she will not be able to breath without support for some time. Therefore she will need:
  • Medical Ventilator, Oxygen concentrator, Humidifier - to help her with breathing
  • A Suction Machine - to clean secretions from her little mouth and nose (because I can not swallow effectively yet)
  • A Cough Assist machine to help eliminate secretion from the lungs
  • My parents to do some training to take care of me

Going forward....

The surgical procedure for tracheotomy and g-tube went very smoothly and the doctors from Grigore Alexandrescu Hospital simply worked as a team to make this happening. Both had to be placed virtually in the same time due to the high risk of anesthesia involved by neuromuscular condition.

Everybody seems to put all their hearth and soul and love in helping me.  Although this is an unfair fight with this cruel disease,  nobody seems to give up on me. Doctors are putting all their knowledge, nurses are carefully taking care of me, everybody that knows me is thinking about me and praying for me.

Thank YOU all!

I'm a little bit scared but I'm continuing the fight (Alesia in ICU)

Tuesday, June 17, 2008

Tracheotomy and G-tube for me

There is more than 2 week since I am intubated and because I do not seems to have enough strength to breath by myself my dear doctors that are treating me with so much love decided that the only option for me to continue fighting  is to have: 

1. Tracheotomy for me to be able to breath
2. A g-tube for me to be able to eat

It is a scary and hard decision to make but it seems that it is the only option for me now.

Tuesday, May 27, 2008

Flying back to Bucharest


With some help of good people I will fly back to Bucharest today. I have to go back to Bucharest  because there will be a long fight and the doctors that know me well since I was very little are here.

I got an helicopter from SMURD and I was transfered to Bucharest at Grigore Alexandrescu hospital.

Thank you Dr Nour Dan for saving my life!
Thank you SMURD for taking me safe to the hospital in Bucharest!

Monday, May 26, 2008

Respiratory STOP!

It is monday morning and there will be a last attempt to check if I can eat some food or not. I opened my little mouth because I'm so hungry, I tried to swallow but the food went on the wrong way and it is harder and harder to breath and soon my breath ...

STOP...

....A lot of doctors running around me.....I have a tube now in my mouth and I am connected to a ventilator that is helping me to breath, and a lot of others that are doing something else for me.....I feel a lot of pain, I feel so weak...I do not know what is going to happen with me!

Friday, May 23, 2008

Started as a small holiday, but ended in the hospital

I went with my parents in a small holiday,  looking for peace and healing, but our plans where turned around quickly because I got sick while I was so far from home. I had to go to hospital and although the doctors and nurses where taken very good care for me, I was not getting better at all.  


Big clouds are rising up in front of me because it seems that I lost the capability to swallow :(.


Friday, April 25, 2008

Genetic tests reloaded

It is been more than one year since I have done the initial genetic testing for SMA. I took the chance and redone the test. Please do not ask why! I just did...And the result is the same even in German language as you will see below, it says that I have homozygous deletion of SMN1 and 3 copies of SMN2 and this means that I still have SMA and I still need to wait for the Miracle to happen. A miracle only for me or a miracle for all the babies that are affected if a cure will be found.


Alesia genetic test re-done