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!! 

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!! 

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 :)

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!! 

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

Anaya's tummy time video

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!! 

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! 

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: 

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!! 

:)

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.

Therapy at Bobath

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 

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... 

Also Anaya visited Bobath centre. It was first therapy of 5. We are going back there tomorrow again. She was so calm and ejoyed :)

https://www.facebook.com/Anayasjourney/videos/953268141515574/

Anaya is saying Hello and asking for your help...

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!!