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...
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.
Alesia, Mommy Daddy and MIHAI NECTARIE (6.4 pounds of love and pictures to follow up soon (the hospital is in quarantine))
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:
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?
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 :)?
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:
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.
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 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.
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!
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:
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!
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!
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.
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!!!
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 do not like to sleep at all, but today the sun was so warm, the wind so soft and I think the birds where singing a sweet melody that made me sleep for a couple of minutes...It was such a beautiful May Sunday with a lot of sun and fun I will surely have something to dream about tonight!
I had today a lot of fun and joy because the weather was so nice today (Thank You God!) and I could go out for a walk in the sun for almost 2 hours. This is huge for me! I could see the trees, the birds, flowers, peoples running around, the blue blue sky and I will now know what colors to choose when I am coloring with mommy, I could feel the wind, the sun gently touching my hands and my face...I could......so many things that are simple and beautiful and we should be happy that we have them everyday for free...without any effort.
Look at the pictures below and tell me how do I look with the sun glasses borrowed from my friend doctor Cristian Tanase, with Texas flag bandanna, surrounded by love and all the equipment that may look scary but made this walk possible and is keeping me alive until the Miracle will happen.
Everything went well lately. I am enjoying my toys and I am waiting for the Miracle to happen. Probably I am dreaming now .... I must be dreaming because pink unicorn does not exist .... and when I will wake up I will run and I will ride a white horse.
Besides reading and commenting story books with mommy hours after hours after hours until my mommy says "no more! let's do something else", watching movies one after another after another, drawing again and again and again I like solving puzzles. Check out the videos below... well, it might be a puzzle for you too because mommy is talking romanian.
Solving animal puzzle with mommy
Reading stories with mommy
I am telling you a secret: I love my mommy, I can not stand a second without her, she makes me happy.
It is the 18th day since I started a new diet and things are going very well now and I can actually say that this came as a rescue for me because no food seemed to work for me anymore and my weight reached the minimum 6.2Kg.
How it was before:
After each meal the stomach was becoming each time like a balloon ready to explode and someone had to take back some of the food from the stomach because otherwise if a gastric reflux happened my life was in serious danger (yes....because I can not swallow and so the food could go on the wrong way)
I was losing weight and there seemed that nothing can be done about it
I became weaker and weaker each day
I stopped to ask anymore for food
How it is now:
No more bloating
I am definitely stronger
I started to gain some weight (6.8kg)
My face is happy again and is not in pain because my tummy is not hurting me anymore.
What have we done?
The new diet, called Amino Acid diet or AA diet improved the quality of life for many children that are fighting with this horrible disease - SMA, and it definitely improved mine too in such a short period. If we could only knew about it earlier, if we could only understand how to apply it earlier, if we could only afford to buy the Elemental Amino Acid based formula earlier...well I guess it is better late than "too late".
This helped and inspired us:
There are articles and testimonials from wonderful parents and doctors that worked to build this diet and that are applying it with good results, the information is out there shared for everyone and it can be a life saver for an SMA child. We where very much inspired and we are thankful for this to:
Lizzy's Nina for her advices on how to proceed with the diet
Yesterday and today I had the feeling that I am taking part of an special operation similar to a commando, or a walk on the moon. The "commando" today was successful and the enemy (an infection around the trach) was defeated.
What is this all about?
In the last couple of days on the skin around my trach an infection occurred. I had to take some medicine and a special treatment so that the infection to go away. To prevent further infection on the spot the trach tube needed to be changed. Here is how the commando started:
Friday; 23 Jan 2009; Place: My Home
While evaluating the possibility of a safe change the trach tube at home we decided that due to a recent infection of the skin around the trach, this being the first trach change after it was originally placed 7 months back, and us not having any experience with changing a trach tube, the operation needs to take place at the hospital to minimize the risks in case of complications and to apply a special treatment for the skin around the trach
Sunday 25 Jan 2009; 12:30 Place: My Home
Departure from home with supervision of my dear doctor and with the BGS Ambulance team
Sunday; 25 Jan 2009; 13:00 Place Grigore Alexandrescu Hospital
Arriving at the hospital, meeting old friends, changing the tube, applying the treatment, taking off back home
Sunday; 25 Jan 2009; 15:45 Place My Home
Arriving safe back home to my story books, movies and toys.
Special thanks to:
Doctor Cristian Tanase: Head of operations, our saver and hero
Prof. Doctor Ioan Basca: Profesor, Doctor, Artist and our hero
Nurse Cristina Olteanu: beside me in a hard moment
ICU of Grigore Alexandrescu Hospital: The place!
BGS and their special team for the Interstellar Ambulance (It is really required a spaceship and special skills to drive in Bucharest)
Operation was a success and we might have to change the trach more often, probably once every month to prevent occurring other infections. Here are some picture from todays trip - my first trip outside my home in the last 6 months:
After so many days of worries because the old g-tube was not functioning anymore as it should, today, thanks to my dear doctor Cristian Tanase, that is getting me out of trouble every time for the last couple of months, the worries are not there anymore....I have a new G-tube: Horray!
The old g-tube was a Nutriport gastronomy system from Kendall size 12Fr and 1,2 cm was working fine and we did not had any important issues while using it for more than 6 months. The new gastronomy placed is Mickey from Kimberly Clark size 14Fr with 1,2 cm. The first impression is that the new type of g-tube is much easier to use due to its system of attaching/detaching the feeding extension.
The changing procedure went relatively smooth and the only issue was while removing the old g-tube because this had a problem with the valve that allowed the balloon that is holding it inside to be deflated. This issue was probably due to the extended time of usage of the g-tube. We where lucky that it was changed by someone with skills and experience and the problem was solved without trips to hospital.
Almost everything else is good with me, beside the g-tube that was solved I have a small big problem with the skin around the trach, but this does not seem to affect my mood, I still sing with Fiona, I am still preparing the food, and I am reading a looooooot of stories. I have some treatment prescribed and I think this will be solved soon, please pray for this!
I just can not stand it and watch how my dinner is prepared by somebody else .... so I have to try myself to do it. Look at movie below and learn how to prepare the formula. I think you will notice how well I am moving my hand.
...I am Ana Alesia, and I've showed up in this world in a sunny day of September 2006. I do not understand yet much about this world, and for now I only know that I have people around me that loves me so much. Their happiness should not be shadowed by anything, however there is a big and bad cloud in the sky right now that doesn't let their (and mine) happiness to be complete...The cloud is the Spinal Muscular Atrophy diagnostic that was put on me. This is a death sentence for me, I am locked in a body that is dying...and the doctors said that it will die before I reach the second birthday. I am now fighting to defeat the disease and I need all the help in the world for this. Please think about me, pray for me: I WANT TO LIVE!!!