Thank you to more donors!

Dear friends,

Here we are, back home. We're slowly getting back into the old routine and trying to make up for all the time we were away from Daddy! :-) We are really enjoying our city, as we await our next doctor appointment to check the status of my arm.

Meanwhile, we've received five more donations from people with big hearts:

Krasnaja
Topalović family
Ivana from Boston
Marin Mihaljić
and Petra-77

We are incredibly grateful to you all for your kindness, and love you lots!

Here's a photo of me taken in St Petersburg in Florida in front of the Serbian Church of St Sava.

Yours

Visit with Dr Nath

Dear friends,

I wanted to tell you how our visit went with Dr Nath.

The appointment was on Saturday, June 6th, in Orlando, Florida.

Dr Nath confirmed that I will need two surgeries (elbow and shoulder). Success is 90% guaranteed.

Dr Nath offered to operate on me at his Dubai clinic for 20,000 Euros for each surgery.

The operations need to be three months apart at a minimum, but if necessary I may have the second one a year or even later after the first, without affecting the outcome.

The most important thing is that we aren't too late in terms of my age.

Dr Nath reiterated that the operations do not touch my nerves and that, beyond the usual risks of surgery, there are no additional risks associated with these procedures.

Until then, the doctor said we should continue with my physical therapy, and he pointed out which exercises I should focus on, and where and how to best make use of electrical stimulation.

We've agreed to stay in touch, and keep him informed of our fund-raising progress, while hoping for the best.

Once again, thank you so much for thinking of us and for your good wishes, and for all of your donations which we've received so far.

Thank you also to Mayche who has made all this possible and who has been with us through thick and thin.

Yours,

Jana

We made it!

We've arrived in Boston! Tired but happy!

People with a big heart

Here is a list of all those who've sent donations so far, because I want you to know how many of you it took to make this trip possible:

-Babyshamble
-Babyshamble's husband
-Draganessa (several donations)
-Ninocka
-Nada_33
-Vlabac
-Petra77
-Orion_2005 (several donations)
-Tina_zzz
-Jelena70 (several donations)
-Mila123
-Nada Miskovic
-Shargarepa
-Oliver's mummy
-Masha111
-Sneksi
-Babydoll
-Ptica_prepelica
-Sneza, friend of Nada_33
-Mamicaitatica
-Bloom
-Naktarina
-Saadet
-Forum „kutak”
-Mamajac
-Venera
-Jovan Loncar
-Bi-kej
-Radenko Blazic
-Dragisa Djordjevic
-Danica Djokic
-Slavisa Karac
-Stjepa Nikolic
-Andja
-Republica
-Daca_83
-Tamara Tutnjevic
-Stanislav Strbac
-Marina Stanojevic
-Mirko Samardjija
-Olivera Pavlovic

THANK YOU!!! HVALA!!!

We're coming to America!

Dear friends, we have our US visas, we have our airline tickets, and we're off on Friday, May 8th! I'm so very grateful to everyone who has helped, I couldn't have even dreamed of seeing dr Nath without you! My gratitude in particular goes out to Ninocka and her husband, as well as Mayche, Babyshamble and her husband, but also Draganessa, and everyone else who has sent money and words of support to us! I love you all!

Yours,
Jana

Amazing news!

Thanks to Mayche from Serbian Café we’ve been able to get in touch directly with Dr Nath and he’s promised to help us out!

Dr Nath is visiting Florida in May and June and will be doing free patient evaluations. Mayche has invited us to stay with her and see the doctor for the consultation, because it certainly means so much more to see him in person. As it was, we had only spoken with answering machines and assistants. Mayche said she got the feeling this was a really kind man and was convinced he’d help us. And she was right: when she wrote to the hospital to request a formal invitation for the evaluation in Florida (which we need in order to get our US visas), Dr Nath replied personally and said he wants to see us and look at Jana personally. He also said he’d help us out as much as possible, and that he’d figure out a way to work it out for us.

Mayche and I were speechless, shaking with excitement and joy.

I can’t describe the feeling, I could not speak, I was just trembling and staring at Jana who was sleeping peacefully…

I couldn’t stop the tears, the only thing my husband and I kept saying was “God is hearing our prayers, we’ll save our Janka, we will!”

My one request to you all is if you could possibly help us out financially as much as you can, and forward the link to this blog to everyone you know, so we can raise as much money as possible and be ready to discuss the surgery with the doctor. Thank you all so much, dear friends, and thank you to the moderators at Serbian Café who’ve kept our story at the top of the page, because that’s where it all started.

Big kisses to all of you!

Jana’s Mum Milica

Here we are, back from Zlatibor! The treatments are over and we're very happy! I am using my arm so much more, and can raise it all the way above my mouth now, which I couldn't do before! I tell my Mum: "Look at this, Mummy, look what I can do!!"

But it wasn't easy, just so you know! When we first got there, I hated the electrotherapy, as you can see, but I soon got used to it.



I had a fantastic therapist named Vesna whom I fell in love with right away and my physician also amazed us with her dedication.



There was lots of snow on Zlatibor, it was just beautiful. My days, of course, were jam-packed with therapy and exercise. My favourite was the swimming pool!

Our only regret is that I caught a virus while we were there and had to miss therapy for a couple of days due to high fever, but that's all over now!

My mum, dad and I thank you all from the bottom of our hearts for making this trip to the Cigota Spa possible and for allowing me to make this progress in my treatment.

I love you all!

Happy New Year!

Lots of love
Jana

Banner for your website

Several generous people have asked for a banner to link to my blog on their website. Here it is, 60 x 160 pixels. Please feel free to use this:






Thanks so much!

Yours,

Physical therapy

Here's a picture from last year where you can see how I get my physical therapy here in Belgrade:

Dear friends,

I have good news: we're going to the Cigota Spa! Thanks to Babyshamble and her husband who donated the funds for 21 days of therapy, I am now able to have the spa treatment that my doctor has been recommending for so long. We've found accomodations and are now working to get the money to cover that too. We leave for Zlatibor on 8 February, and I'm very excited! I'm also grateful to "Neobavestena" who initiated this and who introduced us to dr Senka.

SWIFT number for bank transfers

Dear friends,

We've been told that a SWIFT number is needed for any bank transfers to our account. This number varies based on the currency and bank you are using. Please see below which one applies for you:

- For payments in US dollars:

1. American Express Bank Ltd, USA
SWIFT/BIC: AEIBUS33
ABA: 1240 71889

2. Wachovia Bank, USA
SWIFT/BIC: PNBP US3NNYC
ABA: 026005092

3. Raiffeisen Zentralbank Osterreich AG, Austria
SWIFT/BIC: RZBAATWW

- For payments in Swiss francs:

1. UBS AG, Switzerland
SWIFT/BAC: UBSWCHZH 80A

- For payments in Euros:

The list is longish so please click on the letter below for the bank that is relevant to you:


- For payments in GBP:

Please see below:



With all my gratitude,

Your

My diagnosis

My medical report, shown below, says this:

Brachial palsy on the left side.

Left arm shorter (32.5cm/27cm).
Forearm twisted. Limited active movement, can bring hand to shoulder level.
Elbow semi-flexed. Limited supination. Pinch grip present. Fingers semi-flexed.
Full passive motion present except for final extension at the elbow.
Shoulder blade in exterior rotation and abduction. On motion of arm, shoulder blade motion present as well.
Minor asymmetry of the thorax. Arm only used in auxiliary function.

PayPal functional again

Dear friends,

Just to let you know that PayPal is once again functional, so any donations from abroad can now easily be made this way, to the address manuka-s@hotmail.co.uk.

Many thanks again for your generosity!

My arm

Here's how my arm looks if I just let it drop:

Please sign my guestbook!

I’d love to know who all the nice people are who’ve taken the time to visit my little blog! Please sign my guestbook here!

I know

When other children play games where they need to use both arms, and I can’t join in, then I’m sad. I ask my Mommy and Daddy, “Why can’t I do that?” They tell me it’s because I’m still little, but I say “I know, it’s because of my arm”. I’m not like other kids.

What will happen if I don't get surgery

Statistics say physical therapy can achieve results up to age three, so we hoped to avoid surgery by diligent exercise. I’ve managed to regain 50% mobility in my left arm, but I can’t make further progress without surgery.

The consequences of not operating in the near future can be as follows:
- bent spine caused by the arm dragging on it due to the arm's poor muscle tone,
- further shortening of the arm (it’s already about 2 inches shorter than my right arm),
- contractions that occur in the elbow and shoulder which prevent me from moving and stretching my arm normally,
- muscular atrophy due to insufficient use of the arm.

My treatments thus far

Since birth I’ve been doing physical therapy and receiving other treatments on my arm. I don’t like the exercises very much, in fact, the older I get the harder they are to do. Massage therapy is very painful because my arm is forced into positions I am unable to make. I ask my mummy “Why must I do my therapy while other kids don’t?”

The options for therapy in Serbia are meagre, they include massage therapy, therapeutic paraffin treatment, and electrotherapy. Swimming is another option, but those costs are not covered by insurance. There are also natural spas, such as the Koviljaca Spa in nearby Bosnia, where all of the above treatments are offered, in addition to others, like mud treatments, and water massage. My physician referred me to a spa but my insurance rejected the referral four times.

How I got my injury

The injury to my arm is exclusively obstetric, ie. sustained at birth. It is mostly associated with large babies like I was, at 10lb 9oz and 22 in.

At the ultrasound checkup prior to delivery my Mommy’s obstetrician determined that I was going to be a big baby, over 9lb, so a C-section was scheduled. But I wanted to be born a day early. The obstetrician on duty that night at the Višegradska Clinic in Belgrade didn’t pay much attention to my Mommy’s records, and decided of his own accord to try to deliver me naturally. My Mommy pushed for eight hours in excruciating pain, until finally she started to pass out, and my heart rate began to drop. That’s when they ripped me out of her, breaking my right arm. My Mommy didn’t hear me cry, I was just taken away and she wasn’t even told if I was alive. They didn’t let her see me for ten hours.

Afterwards they explained to her that I had suffered severe distress, and that the nerve on my left arm had been pulled, causing paralysis of the arm. I was put in an incubator until I recovered. I started physical therapy when I was five days old and have been doing my exercises daily ever since.

Surgeries I need

The surgeries would be performed by Dr Rahul Nath at the Texas Nerve and Paralysis Institute.

The first is done on the muscles and is called the (Mod Quad).


The second is done on the bones, and it’s called the Triangle Tilt. Here’s what the arm looks like before and after the surgery.


In order for the operations to be successful, on my return home I’ll have to continue with physical therapy for a year to a year and a half.

(These images are borrowed from the website of the Texas Nerve and Paralysis Institute.)