Adelaide

Tova is booked in and confirmed for the intensive conductive ed program in Adelaide. This is a very similar program to the one we visited in Canada.

We will leave the boys at home for the 3ish weeks we are away and I will drive there! It will be wonderful to have my car with me, my car FULL of our stuff! I plan on taking things I don't even need, just because I can!

If we need the boys or grandparents, they are a $40 - $60 plane ride away. I'm not sure how long the flight is but not long!

Anyone else wanting to do such an incredible therapy program you can find it here: http://www.ffce.com.au/

This program doesn't offer the Hyperbaric Therapy. But that is ok. It does offer loads more hours of therapy a day and if we want we can do the hbot here in Melbourne another time.

Now.. I have started buying tickets in the lottery. Everyone wish me to win! Wouldn't it make life easier to have money for all the therapies we want to do.. I can only imagine life like that.

 

Breathing Funny

Tova woke with labored breathing yesterday morning. She slept through it from about 4am (after climbing into our bed) until about 7am. I gave her pred and panadol once she woke up. After a few hours things had settled down. So, I kept her home from school to watch her for the day. 
She went white as a ghost from the pred, but other than that she recovered quite well. I am so glad we didn't rush to hospital. 

I'm at the point where I do what they would do at the hospital, but at home. If she didn't recover at all or got worse in the first 2 hours I would have taken her for sure. It feels absolutely brilliant to have stayed home.

This morning she woke again with the stupid breathing, but it went away by early morning by itself.. no pred. 

She went to horse riding, which is spectacular. It is such a nice drive and lovely location. It reminds me a little of Tasmania, which is one of the most beautiful places on earth (just a little cold). 

We got her report card from school today.. They don't have the A B C D E F scale so I'm not sure how to comment on it.. Lots of excellent feedback and high achievements. I am proud of her. School has been great for her. It has helped her learn so much. I love her school. She loves her school.

Nissim starts school next year. Two school aged kids. 

Horsies

Tova has been breathing funny for the past few days.
I think she has a scratchy throat. Mine has been a little scratchy, not hurting but not normal and not getting worse and no other symptoms.

The flight home from Canberra was a quick 40mins.. so crazy close yet such another world.

My brother has a big amazing and fun house.

Nissim is still there with my mum and grandpa Russel. They drove up. They will drive back tomorrow.

Nissim is having an amazing time with his cousins. He didn't pay any attention to Yuval and I when we were there.

Tova fell in Love with Aunty Veronica and even gave her a sign name (Auslan V). This is because Aunty Veronica is a musician and can play the piano and sing at a very high standard. Tova and Veronica have the same taste in music. They had a great time. Until Tova had a tantrum because Veronica had to go to work. I have almost never seen Tova so upset before.

Last night she was very teary in her sleep and refused to sleep in her own bed so she slept with me and Yuval in her bed.

This morning Tova started Horse Riding Therapy. She does have to miss some school on a Tuesday morning now, but apparently this will be worth it.

I was expecting Tova to not give it a go what so ever. How wrong was I!!!

Tova: "Um, I don't want to wait, can I go first? Perhasp that horse can come over here NOW! Here horsey, here boy, come here, come, come, come.. horsey"..

Me:" Straaange".

She was only supposed to have a little touch and couple of steps on the horse (his name is Tod, Tod the horse, hehe). But 30 mins later she was still on.. AMAZING.

So.. we will keep doing that.

CUTE!

 Tova at Horse Riding Therapy

Aunty Vironica and Tova on piano

 

Hospital Last week + Canberra

Last week.. Hospital again.. Just pred.. and only for about 4 hours..

This week... listening to Tova is breathing a tiny bit unusual... in Canberra.. hoping NOT to see the inside of the ACT ER.

We are visiting my brother and his family. Nissim and Vicky are 'the same'. Same age, same interests, same language, same same.. They are a bunch of fun to watch together.

 Tova playing Piano in Canberra

 

Tova going to hospital in AmbulanceLast week!

ENT with a Camera

Yesterday Yuval came home from work early.

I picked Tova up from school early.

We went to the head honcho ENT dude for an appointment that has been stressing me out for all of this year. I think I have been there 4-5 times and talked about ent stuffs, but put off this treatment each time.

So, yesterday, with Yuval, we prepared Tova by telling her this:

We are going to an ENT appointment. It isn't going to be nice. Actually it may make you cry. It won't hurt, but will feel uncomfortable. It will be quick. We will be with you the entire time, we won't leave you. Nothing bad is going to happen to you. But you may feel scared. We will be with you. The doctor is going to get a very thin tube with a camera attached to the end. He is going to put the camera on the tube down your nose and look at your throat. We won't leave you. We will hold you and sing to you.

Tova thought it was funny when I ran my finger along her nose, along her cheek and down her neck. And made me do that to myself too. She nodded that she understood.

Yuval and I thought that Tova would cry, cry, cry. Cry so loud that people across the world would hear her.

There is no sedation for this test. And actually, crying is helpful for the dr to see what he needs to see.
The point of this test was to see if there is scaring or damage anywhere that could possibly be causing these frequent visits to hospital and to see if there is damage to the vocal cords. If they found any scaring we were hoping that it could be fixed so that Tova stops getting so sick every couple of weeks. We are pretty sick of going to hospital all the time with a sick Tova. And also, we were hoping they would find a fixable reason why she doesn't talk with her voice.

Well.. first of all, after waiting for an hour or so on the waiting room (we were waiting to see a specific doctor and when he did arrive we were first in to see him). We went into the room and a very lovely nurse sat with Tova on her lap. She wrapped Tova in a sheet so that she couldn't move so much, VERY CLEVER! Tova didn't mind so much, it is kind of like after the bath, being wrapped in a towel!

So far so good.

Then the doctor slid the camera on the tube down one nostril.. Tova shut her eyes. A little tear appeared on her left eye. Just one.

Then he did the other nostril.

She made a few gaggy coughs because the tube is uncomfortable I imagine.

She didn't cry.

She is our hero!
Not because she didn't cry. But because she has been through more than anything I could have ever imagine anyone going through at any stage of their lives. For someone so small and frag she is the strongest person I have ever met.

Oh, and I mostly held it together during this procedure too. I did have to fight back tears, but those tears turned to pride! Yuval was strong too. We were both very interested in looking at the screen of inside Tova's nose and throat. It was amazing.

This little precious miracle child never ceases to amaze us. She is an honour to know.

Result: There is no damage down there. In a way it is a shame. We were kind of hoping for the dr to say "oh yes, here is the thing that I can fix. Once fixed she will talk and also stop going to hospital"... Oh well..