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 ♥️

 

Merry Christmas Everyone

Merry Christmas everyone from our family to yours! 💓

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: 

https://www.facebook.com/Anayasjourney/

You can help us here: 

https://www.youcaring.com/rutachaladauskaite-1060599

or here:

Paypal: D.Zabuliene@gmail.com  (funds for Anaya)

or 

Gavėjas : 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:

https://www.teefunder.co.uk/shop//anaya

Thank you so much!! 

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.

You can read more about us: 

https://www.youcaring.com/rutachaladauskaite-1060599

Please help us here:

Paypal: D.Zabuliene@gmail.com  (funds for Anaya)

or 

Gavėjas : 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:

https://www.teefunder.co.uk/shop//anaya

Thank you so much!! 

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...

You can help us here: 

https://www.youcaring.com/rutachaladauskaite-1060599

Paypal: D.Zabuliene@gmail.com  (funds for Anaya)

or 

Gavėjas : Ruta Chaladauskaite 

Bankas: AB Swedbank 

Banko saskaita : LT377300010093965133 
Banko kodas:73000 
Banko SWIFT kodas:HABALT22 
Mokejimo paskirtis : Parama Anajai 

Thank you so much!! 

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.

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: 

https://www.youcaring.com/rutachaladauskaite-1060599

Paypal: D.Zabuliene@gmail.com  (funds for Anaya)

or 

Gavėjas : Ruta Chaladauskaite 

Bankas: AB Swedbank 

Banko saskaita : LT377300010093965133 
Banko kodas:73000 
Banko SWIFT kodas:HABALT22 
Mokejimo paskirtis : Parama Anajai 

Thank you so much!! 

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.

You can help to my baby girl by praying, sharing and donating 💓

You can help us here: 

https://www.youcaring.com/rutachaladauskaite-1060599

Paypal: D.Zabuliene@gmail.com  (funds for Anaya)

or 

Gavėjas : Ruta Chaladauskaite 

Bankas: AB Swedbank 

Banko saskaita : LT377300010093965133 
Banko kodas:73000 
Banko SWIFT kodas:HABALT22 
Mokejimo paskirtis : Parama Anajai 

Thank you so much!!