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!! 

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.💓

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!!