26/12/2018
Christmas with sick kids
Aiza (little one) for flu couple of days ago. And of course Anaya got it too. Hopefully they not going to get fever too. Trying to use essential oils and nabulizer and hopefully they will get well soon ♥️
09/03/2018
1 year ago Today
Thanks for technology for reminding us what happened today one year ago. It was not an easy day, I would say crazy one. Full of emotions. Because it was still everything new. Still no answers how it's going to be. But that day was a special one. We had a chance to hold our daughter Anaya for a very first time. After 5 days of waiting finally we could do it. It was so scary. She was looking so small, so fragile and so many wires attached to her.
One later I can keep her in my hand anytime, anywhere. And it's my favorite thing to do in the world 💕
You can find more about us:
or here:
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
or
GavÄ—jas : Ruta Chaladauskaite
Bankas: AB Swedbank
Banko saskaita : LT377300010093965133 Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
or you can support us by buying a T-shirt:
Thank you so much!!
07/03/2018
1st Birthday
Few days ago we had a very special day - our baby girl's 1st Birthday. It was a really special day. We are so lucky and blessed to have her in our lifes.
It was not easy year, like a roller coaster. But we went through it. And this day was full of emotions - angriness, sadness, happiness. It is still hard. Still questions why it happened. We had so many lessons this year and got just stronger. And I promise this year going to be very different, because this mama is ready to fight. To fight for this little girl's future. I will go, I will ask, I will fight, and I am not going to give up! We wasted so much time.
We are trying so hard, but all treatments cost lots and lots of money. We want to ask you again to help us. We got approved for rehabilitation in Adeli medical clinic in Slovakia. They do have programme for kids like Anaya for 2 weeks intensive therapy. Team of specialists works with the baby for 3-4 hours a day, 5 days a week. We have a hope that it will help our daughter to get stronger. Therapy cost £1988 + travel, accommodation expensive. We got space in the end of April.
Please help us to take Anaya to rehabilitation in Slovakia.
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
We are trying so hard, but all treatments cost lots and lots of money. We want to ask you again to help us. We got approved for rehabilitation in Adeli medical clinic in Slovakia. They do have programme for kids like Anaya for 2 weeks intensive therapy. Team of specialists works with the baby for 3-4 hours a day, 5 days a week. We have a hope that it will help our daughter to get stronger. Therapy cost £1988 + travel, accommodation expensive. We got space in the end of April.
Please help us to take Anaya to rehabilitation in Slovakia.
You can read more about us:
Please help us here:
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
or
GavÄ—jas : Ruta Chaladauskaite
Bankas: AB Swedbank
Banko saskaita : LT377300010093965133 Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
or you can support us by buying a T-shirt:
Thank you so much!!
05/03/2018
Angry note..
Some people says/thinks that it would be better that my daughter wouldn't survive. Some people says/thinks that she is not improving then what's a point of therapies. Some thinks me and my husband doing nothing to improve her life. But you know what? You can think whatsoever you want. You are not living with us. You are not wearing my shoes and you don't know how we are living and what we are doing. It's easy to talk. And you can just talk. Just don't forget to appreciate your life. Because I do. Because I have HER. She makes me stronger, fighter. Because she is strong, she is a fighter (even for you she is a disable child, vegetable).
So many people said to me - you are so strong, you are my example. But just only one knows how I am feeling. How weak I am.. There was no single week without cry, emotional fight. And I am lucky to have my husband next to my side. I couldn't ask for a better husband and father to our daughter. We are going through this together. There was, are and will be so many tears, cries, angriness. Again some will think ''she is feeling bad about her life''. And again you are wrong. I am feeling bad because of my daughter's future. I had so many plans and wishes for her. Sometimes I am thinking why we are fighting for it. But thanks God as fast this thought comes in my head, the same fast it disappears.
And today is one of the day that I am feeling upset. You was so perfect, still you are to me. But your life should be different, more easier. I love you my baby girl. I always will... And to people who thinks different way then you can F**k yourself....
Don't get me wrong.. There are so many people, who supports us. And I am appreciate that. But unfortunately not so many of them are like this. And even now.. You are reading this because either you are nosy and just ''oh let's see what she will say'' OR reading because you are truly care how my family is doing. If you care you can support us, share my story or donate. Sometimes is more than enough to say one word to make someone feel better...
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
So many people said to me - you are so strong, you are my example. But just only one knows how I am feeling. How weak I am.. There was no single week without cry, emotional fight. And I am lucky to have my husband next to my side. I couldn't ask for a better husband and father to our daughter. We are going through this together. There was, are and will be so many tears, cries, angriness. Again some will think ''she is feeling bad about her life''. And again you are wrong. I am feeling bad because of my daughter's future. I had so many plans and wishes for her. Sometimes I am thinking why we are fighting for it. But thanks God as fast this thought comes in my head, the same fast it disappears.
And today is one of the day that I am feeling upset. You was so perfect, still you are to me. But your life should be different, more easier. I love you my baby girl. I always will... And to people who thinks different way then you can F**k yourself....
Don't get me wrong.. There are so many people, who supports us. And I am appreciate that. But unfortunately not so many of them are like this. And even now.. You are reading this because either you are nosy and just ''oh let's see what she will say'' OR reading because you are truly care how my family is doing. If you care you can support us, share my story or donate. Sometimes is more than enough to say one word to make someone feel better...
You can help us here:
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
or
GavÄ—jas : Ruta Chaladauskaite
Bankas: AB Swedbank
Banko saskaita : LT377300010093965133 Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
Thank you so much!!
03/03/2018
Back to the hospital..
Hello, hello...
It was a while when I wrote something about Anaya. Last week we have been back to the hospital. She spend 4 days there. She was vomiting for a while. We went once to A&E, but they send as to go home. When we went back on Monday they admitted Anaya because it was more than a week she was throwing up after every feed.
They started treating as she had tummy bug. And for two days gave her Dioralyte and she was fine. Just she started to have more seizures. They did EEG.
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
It was a while when I wrote something about Anaya. Last week we have been back to the hospital. She spend 4 days there. She was vomiting for a while. We went once to A&E, but they send as to go home. When we went back on Monday they admitted Anaya because it was more than a week she was throwing up after every feed.
They started treating as she had tummy bug. And for two days gave her Dioralyte and she was fine. Just she started to have more seizures. They did EEG.
Her EEG came back and it was better than 3 months ago. It's mean steroids helped her. But we can't see improvement with Vigabatrin. Also doctor said that not all jerky movements are seizures related. So it's a good news.
They started to give half Dioralyte and half milk. She was tolerating it. But at day 4 we started to give her milk and she vomited once again. But they discharged us. In case she will vomit we will have to go back.
And she did vomit at home, but doctor said to give her Dioralyte. I am giving half milk, half Dioralyte and it's looks like she is tolerating. Need to start increase milk and to see how she will do.
Tomorrow is Anaya's birthday so we are asking to help us by praying, sharing and donating.
We have big plans for this year. And hopefully she will get stronger. We have a hope. I am not going to give up. Never ever!
You can help us here:
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
or
GavÄ—jas : Ruta Chaladauskaite
Bankas: AB Swedbank
Banko saskaita : LT377300010093965133 Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
Thank you so much!!
04/02/2018
Steroids journey is over
On Friday (02/02/2018) we went to the Hospital to check my little one blood pressure and to see if she will continue to have steroids or will start new medications. Unfortunately Anaya's blood pressure was still high, so she can't continue with steroids. And she will start new medication Vigabatrin. Anaya still have seizures daily. This journey sucks, but we are not going to give up. Mama has a plan B. At the same time we are weaning of Phenobarbital, then we will start to wean of Clobazam. She is still taking Keppra.
On the good side she is more calm, happy and more alert. Next week we are going to see HBOT ( (Hyperbaric oxygen treatment). Can't wait for that :)
More about HBOT - Hyperbaric Oxygen Treatment involves breathing pure oxygen at higher than atmospheric pressures in an enclosed chamber. This process causes oxygen to be absorbed by all body fluids and by all body cells and tissues, even those with blocked or reduced blood flow. This increased flow of oxygen stimulates and restores function to damaged cells and organs, including those of the liver and brain.
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
On the good side she is more calm, happy and more alert. Next week we are going to see HBOT ( (Hyperbaric oxygen treatment). Can't wait for that :)
More about HBOT - Hyperbaric Oxygen Treatment involves breathing pure oxygen at higher than atmospheric pressures in an enclosed chamber. This process causes oxygen to be absorbed by all body fluids and by all body cells and tissues, even those with blocked or reduced blood flow. This increased flow of oxygen stimulates and restores function to damaged cells and organs, including those of the liver and brain.
You can help to my baby girl by praying, sharing and donating 💓
You can help us here:
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
or
GavÄ—jas : Ruta Chaladauskaite
Bankas: AB Swedbank
Banko saskaita : LT377300010093965133 Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
Thank you so much!!
01/02/2018
Day 15 of Steroids
Wednesday was day 15 of Steroids. I had to take Anaya to the hospital for weekly tests - blood pressure, blood sugar and urine. And doctor said that we have to stop steroids, because her blood pressure was very high. Higher than last week. Also he couldn't prescribe medication for blood pressure because of her condition. Today (Thursday) we skipped steroids again and tomorrow going back to hospital to check her blood pressure. If it's fine then we are going to continue with lower dose of steroids. But if it is still high then will try new medications..
Also these two weeks Anaya is so sensitive and always in our hands. I guess she used to it now :D But I can't complain... she is feeling so relax then :)
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
Also these two weeks Anaya is so sensitive and always in our hands. I guess she used to it now :D But I can't complain... she is feeling so relax then :)
You can help to my baby girl by praying, sharing and donating 💓
You can help us here:
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
or
GavÄ—jas : Ruta Chaladauskaite
Bankas: AB Swedbank
Banko saskaita : LT377300010093965133 Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
Thank you so much!!
30/01/2018
Day 13 on Steroids
Day 13 on Steroids and day 14 of weaning Phenobarbital. Anaya is a little bit calmer for a few days. Also crying less, but still very stiff.. Also noticed that she started to smack her lips and shake her head again. I hope that steroids will help her to stop seizures. Because she is very sensitive nowadays we can't do much physio. But at least she likes to be on her tummy and holds her head for a little bit. Here she is working on head control and vision stimulation. Thank you everyone for support and prayers
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
aNAY
❤️
You can help to my baby girl by praying, sharing and donating 💓
You can help us here:
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
or
GavÄ—jas : Ruta Chaladauskaite
Bankas: AB Swedbank
Banko saskaita : LT377300010093965133
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
Banko saskaita : LT377300010093965133
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
Thank you so much!!
aNAY
❤️
Day 6th of Steroids
Steroids updates day 6th. Anaya is very angry and in pain. Her body so stiff. I read that worm bath can help to release pain and stiffness. We tryed it. And I can't believe it! After few minutes she slept in bath 
Also grateful that husband is on holiday this week, so I have support next to me. Anaya crying from morning till evening. She gets wet of her sweat. But we noticed just few clusters in a day. It's mean a lot to us!
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
Also grateful that husband is on holiday this week, so I have support next to me. Anaya crying from morning till evening. She gets wet of her sweat. But we noticed just few clusters in a day. It's mean a lot to us! 
Unfortunately it didn't go so well at Bobath centre. She was so stiff and grumpy. We removed next two appointments for later time when she will feel better.
You can help to my baby girl by praying, sharing and donating 💓
You can help us here:
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
or
GavÄ—jas : Ruta Chaladauskaite
Bankas: AB Swedbank
Banko saskaita : LT377300010093965133
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
Banko saskaita : LT377300010093965133
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
Thank you so much!!
Day 3 of Steroids
Day 3 on steroids. She is crying like this VIDEO second evening in the row.. I knew it's not going to be easy.. But like this.. Its heartbreaking. It is ugly side of steroids. I hope this treatment will help to stop seizures.. We can see that clusters reduced.
Also Anaya had her second therapy at Bobath Centre on Friday. It didn't go so well. She was very stiff and not in mood to work. Hopefully tomorrow she will feel better.
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
Also Anaya had her second therapy at Bobath Centre on Friday. It didn't go so well. She was very stiff and not in mood to work. Hopefully tomorrow she will feel better.
You can help to my baby girl by praying, sharing and donating 💓
You can help us here:
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
or
GavÄ—jas : Ruta Chaladauskaite
Bankas: AB Swedbank
Banko saskaita : LT377300010093965133
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
Banko saskaita : LT377300010093965133
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
The start of Steroids journey..
Hello everyone,
My little one started (17/01/18) new medications to treat seizures (infantile spasms). Anaya started to get steroids - Presnisolone. It will take 5 weeks to take them. 2 weeks on higher dose (40mg daily) and then 3 weeks to wean it off. Also we started to wean Phenobarbital too. I hope for the best. To see seizures activities daily it's so hard
😞 But hopefully I will have good news soon. It was no possible to count how many clusters she was having daily. It was non stop. Really hard to see your child like this...
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
Banko saskaita : LT377300010093965133
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
My little one started (17/01/18) new medications to treat seizures (infantile spasms). Anaya started to get steroids - Presnisolone. It will take 5 weeks to take them. 2 weeks on higher dose (40mg daily) and then 3 weeks to wean it off. Also we started to wean Phenobarbital too. I hope for the best. To see seizures activities daily it's so hard
😞 But hopefully I will have good news soon. It was no possible to count how many clusters she was having daily. It was non stop. Really hard to see your child like this...
Also Anaya visited Bobath centre. It was first therapy of 5. We are going back there tomorrow again. She was so calm and ejoyed
Anaya is saying Hello and asking for your help...
You can help us here:
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
or
GavÄ—jas : Ruta Chaladauskaite
Bankas: AB Swedbank Banko saskaita : LT377300010093965133
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
Thank you so much!!
Our story.. Anaya's journey
Our life changed on the 4th of March 2017.
I had healthy pregnancy until my contractions started. I went to the hospital 4 times. 3 times midwife said that my baby's heart tone are not good and that i need to go home and drink more water. When i went 4th time again they said go home. But I told them that i cant go, I have no powers by being 3 days in pain. Pain was not normal. I couldn't bear even baby's movements. It was so paint full. Then they admitted me and labor started, but something went wrong. My girls tones dropped extremely down. And buzz was pressed. Doctors and nurses run to the room and took me for emergency c section. I had full anesthetic and when I woke my little one and husband was not near me. They told me that she is fine, but she will be transfer to another hospital for cooling treatment. Before transfer I had 1 min to see her for first time. It was really hard time, not as I dreamed to meet my child first time. She was in coma and cold...
For the first three days Anaya received cooling treatment where her core temperature was lowered to 34 degrees. Also she started having seizures. After 5 days we had first few minutes cuddles and also they took her off the ventilator. On day 6 she opened first time eyes and start moving. Still we had up and downs. Two times we notice seizure activity that means more medications. Also not sucking reflect. So she was fed with NG tube. Every day there has been something new, something scary, something completely life changing. She spend her 1st month, 1st Mothers day in the hospital. After 5 weeks she was transfer to our local hospital. There we start giving bottle. It was slowly but at least moving forward. We wanted to start living normal life as soon as possible. After almost 7 weeks in the hospital she came home. And we started to live life. To attempt normal life.
And now 10 months later she still fed by NG tube. She was taking a little amount milk and puree by mouth, but we got to know that she has silent aspiration. So no more food orally at least at the moment. We do not have a full diagnosis yet but Anaya has, as the doctor said, by definition got some form of Cerebral Palsy. She has been defined as having Hypoxic-Ischemic Encephalopathy (HIE) grade three. This is of course the most severe grading for oxygen starvation there is. Also Anaya has epilesy (Infantile Spasm).
Doctors don't know her future, its a wait and see game. But... here is the problem. Essentially Anaya has potential IF we put in enough early intervention and although they have been brilliant so far the NHS simply cannot provide physiotherapy with the frequency she requires. Recently we came back from Lithuania where she had intensive physio therapy.
Our 2018 plan:
-Bobath Centre where working with kids with Cerebral Palsy. Physio, occupation and feeding therapy (£130 one therapy session)
-Anat Baniel Metod with movement to awake brains ( £85 one therapy)
-Rehabilitation Zabajka 2 in Poland (around £1200 + travel expensive)
-Stem Cells treatment in USA ( £15k + travel expensive). It is our biggest goal to go there. And again after this waiting therapies, therapies and therapies.
In every area Anaya requires more support but NHS can't supply and you can see it is excruciatingly expensive.
The fact is Anaya needs help and we have realized we need to raise a lot of money to give her the help she needs. With hard work we can see she improves. We want to give her every opportunity to continue to surprise us. I don’t think we could live with ourselves if we didn’t give her a chance, but that chance just costs lots and lots of money.
This page is a starting point for us to give information about our fundraising efforts which will develop over time. Thank you for visiting and thank you for your support. If you can't donate, please share. Its mean a lot to us.💓
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
GavÄ—jas : Ruta Chaladauskaite
Bankas: AB Swedbank
Banko saskaita : LT377300010093965133
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
I had healthy pregnancy until my contractions started. I went to the hospital 4 times. 3 times midwife said that my baby's heart tone are not good and that i need to go home and drink more water. When i went 4th time again they said go home. But I told them that i cant go, I have no powers by being 3 days in pain. Pain was not normal. I couldn't bear even baby's movements. It was so paint full. Then they admitted me and labor started, but something went wrong. My girls tones dropped extremely down. And buzz was pressed. Doctors and nurses run to the room and took me for emergency c section. I had full anesthetic and when I woke my little one and husband was not near me. They told me that she is fine, but she will be transfer to another hospital for cooling treatment. Before transfer I had 1 min to see her for first time. It was really hard time, not as I dreamed to meet my child first time. She was in coma and cold...
For the first three days Anaya received cooling treatment where her core temperature was lowered to 34 degrees. Also she started having seizures. After 5 days we had first few minutes cuddles and also they took her off the ventilator. On day 6 she opened first time eyes and start moving. Still we had up and downs. Two times we notice seizure activity that means more medications. Also not sucking reflect. So she was fed with NG tube. Every day there has been something new, something scary, something completely life changing. She spend her 1st month, 1st Mothers day in the hospital. After 5 weeks she was transfer to our local hospital. There we start giving bottle. It was slowly but at least moving forward. We wanted to start living normal life as soon as possible. After almost 7 weeks in the hospital she came home. And we started to live life. To attempt normal life.
And now 10 months later she still fed by NG tube. She was taking a little amount milk and puree by mouth, but we got to know that she has silent aspiration. So no more food orally at least at the moment. We do not have a full diagnosis yet but Anaya has, as the doctor said, by definition got some form of Cerebral Palsy. She has been defined as having Hypoxic-Ischemic Encephalopathy (HIE) grade three. This is of course the most severe grading for oxygen starvation there is. Also Anaya has epilesy (Infantile Spasm).
Doctors don't know her future, its a wait and see game. But... here is the problem. Essentially Anaya has potential IF we put in enough early intervention and although they have been brilliant so far the NHS simply cannot provide physiotherapy with the frequency she requires. Recently we came back from Lithuania where she had intensive physio therapy.
Our 2018 plan:
-Bobath Centre where working with kids with Cerebral Palsy. Physio, occupation and feeding therapy (£130 one therapy session)
-Anat Baniel Metod with movement to awake brains ( £85 one therapy)
-Rehabilitation Zabajka 2 in Poland (around £1200 + travel expensive)
-Stem Cells treatment in USA ( £15k + travel expensive). It is our biggest goal to go there. And again after this waiting therapies, therapies and therapies.
In every area Anaya requires more support but NHS can't supply and you can see it is excruciatingly expensive.
The fact is Anaya needs help and we have realized we need to raise a lot of money to give her the help she needs. With hard work we can see she improves. We want to give her every opportunity to continue to surprise us. I don’t think we could live with ourselves if we didn’t give her a chance, but that chance just costs lots and lots of money.
This page is a starting point for us to give information about our fundraising efforts which will develop over time. Thank you for visiting and thank you for your support. If you can't donate, please share. Its mean a lot to us.💓
You can help us here:
Paypal: D.Zabuliene@gmail.com (funds for Anaya)
or
Bankas: AB Swedbank
Banko saskaita : LT377300010093965133
Banko kodas:73000
Banko SWIFT kodas:HABALT22
Mokejimo paskirtis : Parama Anajai
Thank you so much!!
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