Completing Prep

Congratulations to Tova for Completing her first year of school! 

She did very well, she loves it. 

School holidays are here. Today we went bowling and to the movies, both kids loved both activities. 

Tova and I are off to Adelaide in a week or so. Nissim is trying to decide if he wants to come with us or stay home with Aba and grandparents. He is welcome to do either or a combination. 

We have booked in to do stem cell treatment in Feb/March too! So, the start of this year is going to be a busy one. 

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..

Hospital, Stem Cells, Conductive Ed and Horses

Thursday Night Tova was breathing very fast and very shallow. Her heart rate was through the roof, I don't know what it was at it's highest and I know I have seen it faster, but it wasn't good.
The ambos whisked her away quickly with the 02 mask on. 
It was different to the usual breathing issues Tova has. She was all floppy and very distressed. Usually she is still quite happy and active with her croup episodes.
It is always scary and this was no exception.
We got to hospital and were put in one of the top bays (near the nurses station) but not directly opposite the nurses station. It is always better to be further away from the nurses.. the further away the 'healthier' the patient! We were still placed in one of the closest..
Unusually it was only 8pm - ish.
They, poked, prodded, x-rayed, weewee-sample-tested, looked in ears, mouth, all over her body.. Her 02 levels were around 92 at their worst.. after nurofen she started to relax, her fever went down and her breathing settled.
That was it! Nurofen! No pred, no adrenaline, just Nurofen!

We were home by midnight. They were going to keep us but respect my opinion as a frequent flyer and let us go home.
Since then she has been mostly fine.

She couldn't attend her school holiday program on Friday and just stayed home with me. We both went to the chiropractor and then did pretty much nothing for the rest of Friday.
I am very pleased that school holidays end today! Back to school tomorrow! We did find a great school holiday program last term holidays, so Tova attended that program again these hols too. The first day she was there was a bit unusual, they didn't feed her much really at all (maybe a couple of mouthfuls of puree fruit all day and that is it), they also managed to sunburn her and a foot ball hit her in the stomach.. So, after I had a talk with them about such odd occurrences, it didn't happen again.

She actually didn't attend too many days this time because she kept getting sick on the days she was enrolled there.. *sigh*. 
But other than the strange first day they are a fantastic school holiday program with lovely workers that really love Tova. When I pick her up I usually spend 10-15 mins listening to the workers and other kids telling me all about Tova's day. It is really lovely. 
The school holiday program is through the YMCA. They don't discriminate and are happy to help Tova with her extra needs (not sure what happened on the first day).

Tova has been given a place in a horse riding therapy program. Apparently this is very good for muscle tone! We shall see. Hopefully it will help her walk... The only issue with it is that it is only during the school term and during school hours. So she is going to have to miss school one morning a week. For however long..

Tova has actually been holding her balance when standing since about 2-3 weeks ago. It is amazing to see. Walking soon!!!! She would love to!

We also found and have been given a place in a therapy program in Adelaide. It is almost the same as the one we went to in Canada and actually the lady that runs it went to uni and shared an apartment with the lady that runs the program in Canada. 
So we are now just trying to get the funds sorted out for the 3 week intensive program in SA. Including accommodation it will cost about $10k.. It is fantastic that it is much, much closer than Canada and I am even thinking about driving there! So I will have my car with me.

It is also going to be fun to meet my neices that I haven't met yet. They live in South Aus. And also exciting to see the rest of that part of the family!

There is another therapy that we have heard about, stem cell therapy, but not the usual bone or umbilical type. This one is where they take Tova's blood do something stemcelly to and then put it back into Tova.. so not invasive! But yep, $150THOUSAND dollars.. innnnssaaannneee.. So, that one is off the table!

Tova and Saba

Tova and Saba. Nothing else needs to be said!

Tova and Saba at a Brit

Hospital, Sick and Birthdays

Happy 6th Birthday to the most beautiful Tova in our world! Nissim wrote Tova on her birthday card and Nissim in the 'from' bit. So cute!
Tova slept in until about 9.30am recovering/still being sick. We spent Thursday night in hospital from about 3-4am till close to mid day. Tova didn't sleep. I slept for about an hour when they moved us into short stay! I don't mind short stay so much, in comparison. And this time they didn't take forever to move us from the critical bay around to short stay, so that was good.
There were 3 adults in peads, it must have been a busy night in emergency, I've never seen that before.
It really bugs me that the Monash Children's doesn't have toilets child size or any portable seat for a little child to use the toilets, they don't have appropriate beds for children that can fall out of beds and are too old/big for cots, and the cots don't adjust their height anyway, so even if I did put Tova in a cot, she could climb out and fall quite a distance to the floor. They also don't have food appropriate for someone that doesn't chew. These are small things, but really strange. It means that I can't go to the toilet, as I can't leave Tova who doesn't sleep because drugged up on uppers, she would either fall out of the bed or climb out and crawl around on the revolting floor, she can't/ won't use the toilets because she will be scared to fall in. 
I think the new city hospital has all those things, and they even have child minding for siblings if need be. I be they even  have staff that sit with your child for a moment so mum/ dad can go to the toilet etc.. oh well. Monash is walking distance from our home, so it is convenient.
When the ambos came to the house in Thursday night/ Friday morning, they took one look and listen at Tova and said "um, I think we should just go NOW".. off we went.
When we were discharged Nissim came home as Grandpa, who usually has him on Friday's was sick. Poor Nissim. I was tired and stressed, Tova was sick and lethargic. So I dragged us off to the cinema to watch a big Tv rather than the small TV at home. We went to see Epic, fail! We left before the end. Nissim can't handle any loud noise and Tova had a head ache, so some of the loud noises made her cry. Oh, not to mention it is a B O R I N G movie even to them.
The other day I took Tova to Despicable Me 2! That was fantastic, we both loved it.
When Tova woke up this morning Nissim and I sang her happy birthday, she loved it. We opened all her Presents. Everything Little Mermaid! Her favorite. We still have to get her a few Despicable Me toys. She then spent the day being miserable and crying, resting and watching TV. What a let down of a birthday.
The grand mothers came over with a cake this afternoon. We all had cake for dinner.
I'm feeling pretty miserable, pretty sure that Nissim is feeling pretty misery guts too. We didn't have such a great day. Poor Tova.. BUT Happy birthday princess!

Princess Tova slept in until about 9.30am because she isn't well, but at least she is home.

Princess Tova slept in until about 9.30am because she isn't well, but at least she is home.    

Croup, Endo, Fairy Princess

Tova got croup the other day. We could have taken her to hospital, they would have kept us for the day/night, they would have given her pred and adrenalin.

Our bottle of Pred had expired (wooohooo, feels good) and it was a Sunday. It isn't easy to find a doctor open on a Sunday late arvo, so we rang the home visiting doctor. He was fantastic. Tova was fantastic, she is so much happier to have someone look in her ears etc at home than in their office. I'm going to remember that!

So, he wrote us a prescription for Pred.

We waiting 2 hours, no improvement.

I 'knew' we were going to hospital at this stage, but she wasn't getting 'worse' so we waited 3 hours. No change. I had packed all the hospital bags by this stage.

Then all of a sudden at about 3.5-4 hours after the pred.... silence, the breathing was almost 'normal'. That was good enough for us. We stayed home and made it through the night with no drama.

Tova stayed home with me on Monday, I didn't get much work done, but we did go to the movies and it was fantastic. I loved it. We watched Despicable Me 2, Tova loves those movies. It was fun, she was happy, breathing was fair..

Tuesday she had a hearing test, quite normal, fluid on one ear, slight loss in left ear and she should be wearing her bone conducing hearing aide. So she will!

Tuesday back to school after the test.

Wednesday all good. Yuval has a sore throat, he probably has a lower immune system left over from having chicken pox the other day. 

Yesterday when I got Tova off the school bus I was greeted with the most beautiful site. Check out the photos! She is STUNNING!

Tova had an appointment with the Endo last week too. She has grown more in the last 6 months than she did all last year. She is about 13.8kg now too! Growth Hormone doing it's job.

 tova fairy 

Broken heater

It started a few weeks ago. I could smell gas every time I walked into the house past the heating system thingy.

Eventually after the neighbor also rang me to tell me that she could smell gas from our house, Yuval rang the gas company. They immediately turned off the gas to the house due to a major gas leak. Great.

No hot water nor gas for cooking for that night. I took the kids to mums, bathed the kids and made their dinner there. That as fun. Not. Just having to do it all alone (Uv at home with plumber, mum and rus at work), was difficult, and schlepping all the stuff along with us was hard.
And because I was at mums house I had to eat 3kg of chocolate just because it is there... I have no control.

Over the next few days the hot water was turned back on, and gas for cooking, but no heating. The house is seriously freezing with no heating.

Yuval had a backache during all this and went for a massage, the next day he was hurting heaps, we assumed from the massage. Then his neck started hurting heaps. So he want to the physio, kinda made him feel horrible too. So, he was hurting and feeling freezing in our cold house.

The other night, it was cold, but Yuval was shivering like crazy. I knew there was something wrong with him. But it was hard to know as the house really is cold. He was in the hot bed (electric blanket) so started to get too hot.

Tova got sent home from school for half a day during all this too, apparently she wasn't quite herself. But at home she was perfect. So I sent her back to school the next day.

I have my new electric throw rug, so I am warm sitting at my desk working each day.

Nissim is just tough.

So.. on Friday the 9th of August, Yuval rang me from work to tell me he had left work early to go to the dr as he has some strange spots on his body. Perhaps it was from climbing through the roof and getting pricked by the insulation.. or not..

A few hours past and I get a phone call "guess what?" he asks me..

Me:" um, you have measles and are dying?"

uv: "chicken pox"

me: "don't come home, go stay with a parent, your kids aren't immunised, go away!"

hahah. poor uv. He came home to grab some clothes. When he left I scrubbed the house down and changed all the sheets and so forth. I rang Tova's school to let them know and to ask them what they think I should do.. and why should I be scared if the kids get it. other than the fact that it is horrible to get.
The school nurse was busy.

I checked the blue immunisation books I have for the kids and discovered that they are actually immunised. The school nurse got back to me and said that Yuval could come home.

He came home and stayed away from us all as much as possible. We went to Shabat/Nissim birthday Dinner at my mums. No one wanted to sit next to uv, I had to serve him as no on wanted to touch anything he had touched. haha. Then he went to his mums to be looked after properly and get some rest. We haven't seen him since. We also thought it would be a good idea for Yuval to stay away so that we (the kids and I) don't infect anyone else we hang out with over the next few days. And I really don't want to get it.. My child hood memories of chicken pox are wishing I was dead.

I asked Nissim if he would like to skype Aba to which he replied 'no, I don't want to see him and his spots'.

Everything is much harder and lonelier without my spectacular husband. It is annoying without him.

Oh, I forgot to mention: The other night Nissim and Tova were playing some stupid game where they were falling back onto Tova's bed. It wasn't that bad, but Nissim started moving Tova to the middle of the bed so she wouldn't fall off the edge. He forgot to wait for her to move her feet as he was moving her hands. Her face struck the metal bed post and her tooth fell out. So the tooth fairy came during the night and left Tova a barbie. Oh the drama.

Two 5 Year Olds in the House!!

There are two 5 year old children in the house. At least for the next 11 or so days! Happy Birthday to my best boy!

Still no hospital visits since, foreverago.

Tova still getting the hang of the walking canes.

Tova still getting the hang of self feeding.

School remains one of Tova's most favorite things and now she can even write her own name!

Life Changing Eating Progress

Tova ate her entire dinner herself tonight...

A couple of days ago Yuval said we should really just give it a go. Let Tova eat at least a portion of a meal herself. So we started doing that.

She is very good at it.

I think that school has most probably been teaching/practicing with her heaps so she has improved so much since the last time we tried. Last time Tova was dropping the spoon covered in food on the floor for her own amusement. Now she holds on and just eats..

This is going to change so much about meal time.

Firstly, it is amazing to see Tova have such independence, and everything that will come from that.

Secondly, I will be able to eat a meal myself, without 'one spoon for you', 'one spoon for me'... How strange.

We aren't quite there yet. She doesn't think it is too great and often asks one of us to feed her.. but I can see that we are VERY, very close..


The next big step will be to move on from mashed/puree.

I can't even imagine life where I just hand her a sandwich..

In other news.. Checking back on the blog, the last time we were in hospital for croup was MARCH.. that is ages ago. 4 Months and counting.

I don't know if I remembered to mention, but while Yuval was away last month (he went away with his Dad for about 20 days), I got Tova a big girl bed, it is so cute. She is a good girl and sleeps in it all night. She is a tiny little dot in the big double bed, but she loves that she can fit heaps of her babies/dollies/toys in there with her. The last couple of nights she has got up a zillion times before going to sleep. I'm not sure why, as she has been in the bed for about 2 months no worries. It is really hard not to laugh. Nissim get's cross with her when she crawls past his room. "go back to bed, naughty Tova".

School holidays were great, Tova attended a fantastic program wtih Caulfield Rec Center (YMCA), they were brilliant. School is back and Tova loves it.

Nissim is being fantastic. He is such a good boy. Tova and Nissim play really well together now. He loves making her laugh. She loves watching him.

We have amazing kids.

Austraian Ballet - Swan Lake - Front Row Seats

Some time at the beginning of this year I found Tova mesmerised in front of the TV watching the ballet. So I went and got us some tickets to Swan Lake.. front row even.. Amazing seats.

I have been looking forward to this all year. Looking forward to seeing Tova's face light up seeing ballet live.

Last night, well this morning really, I woke to a vomiting Tova at about 1am. Brilliant.

So.. who else has front row tickets to the 1.30 Swan Lake performance yet are sitting at home feeling sorry for themselves with a sick kid? No one? Just me?

No one had better be stretching out in my seat.. Get off!

There is no way to contact the ballet people today. I hope they give us tickets to another show.

I'm sad.

Tova is sick. She hasn't vomited again today and she has eaten little bits. She has been asleep for the past 2 hours, so perhaps she will wake up all better.

Not fair.

Tova Growing

The past few weeks have been kind of interesting.

When Tova and I got back from Canada,  Yuval was home for about 5 days and then he gallivanted off to Morocco with his dad for something like 20 days.

Being a single mum to both kids for so long was fine.. the kids bit isn't so hard, but the dealing with the world without the support of a husband was hard. Thank goodness for skype, messenger and email not to mention thank goodness for grandparents.

Yuval is back now. He had that trip planned for quite some time. His dad was born in Morocco, so now yuvie has seen where his dad grew up and had some unique experiences.

I am so happy he is back. I even caught the shuttle bus to the airport to meet him at his gate and cried a little when I saw him.. We went in another shuttle bus to get his car which he had left in an airport parking place. I drove him home.

Life is pretty much back to normal now. Tova back at school for the past few weeks. Nissim being gorgeous and helpful. He is amazing. He and Tova get along really well and he loves making her laugh.
It is actually easier when they are both around together, rather than just Tova as he will play with and entertain her.

Tova had an appointment with the endo recently. She has grown something like 3.5cm since Feb, which is when the Growth Hormones started. That is very good for her. She is also more than 13kg now. She is still under the 3rd percentile for her age.. but that really doesn't mean much to me other than the fact that she is small, which I can see with my eyes.

On Wednesday Tova's teacher rang me at about 3pm telling me that Tova had vomited at school.. not nice. She took the bus home as it was quicker for her to get on the bus at 3.15 than for me to drive up there and get her. She made it to the top of our street before she vomited on the bus. The poor bus people. Poor Tova.

She was still happy enough. She didn't like vomiting, but in between the 5 or so vomits she did over the next few hours she was happy enough. Lots of washing for me.

Tova fell asleep in our bed for the night and didn't vomit again all night nor all Thursday. She stayed at home on Thursday and Today, I don't want her to give it to anyone else. None of us have it, so that is lucky. Today is actually the last day of school before 2 weeks of school holidays. Oh well..

This was our first Tova vomiting experience since the days of tube feeding almost 3 years ago. It is good to see that she can vomit, since we tortured her with a fundoplication back in the days of being completely fucking stupid listening to 'specialists'. I deeply regret quite a few decisions we were lead to believe were the best for Tova. If I knew then what I know now I would have never listened to the incorrect information given to us by the people we were supposed to trust. I am so angry! They made us do terrible things to Tova, such as the fundoplication and PEG.. but anyways.. I digress.

So, holidays begin. Tova will attend a holiday program for 6 days of the holidays. The Friendship circle girls are taking her to a farm for another day and there is a nanny coming for 3 of the other days. So we are pretty much sorted.

Oh and interestingly.... I have been trying to find a conductive ed program here in Australia for Tova to attend hopefully a couple of times a year for 6 weeks at a time..ish.. I found one in South Aus, I sent them the report from Ability Camp and got an email back the other day telling me that as it happens, coincidentally, the lady that runs the program in SA went to uni and even shared an apartment (in Hungry) with one of the conductors from Ability Camp. I don't know if they have ever stayed in touch with each other, but I will find out. How amazing. It must be a sign of good things to come.

Everything Sux

So, I rang CPEC again the other week. After I emailed them from Canada a few weeks ago, oh and after I went in there in person a few months ago (to be asked to leave my details and someone will contact me because they were too busy to talk to me without an appointment), oh and after I called them a few months before that and left a message with someone and so on for the past 4 years. I actually got to talk to someone this time.. She was all short and didn't have much time for me, she sounded busy. I asked if there was a better time, she put me on hold and all of a sudden I was talking to someone else with just as much patience and time. They suck! The lady told me that the person I need to talk to Kim, would call me back on Tues, Thurs or Friday, as those are the days she works. She assured me that she would call me back. This was after she implied that I was lying about trying to contact them for 4 years... OMG< WHY WOULD I?

So of course, I haven't heard back from them.. They can shove it. How revolting are they. I have actually heard some not so great things about their attitude. Apparently they are 'cold'. So whatever. I guess we have to find something else. Such a shame as they are in the building next door to Tova's school.

The next suckers are Monash ENT. So, I rang them to tell them we would be 15-20 minutes late. Tova had an appointment at 3.15. They said no worries. We got there at about 3.40. By 5pm, Tova was starving. But I can't just hand Tova something to eat, like all the other parents were doing (and going in before us), Tova doens't chew, and doesn't self feed. So by 5.30 when the hopeless registered or what ever the fuck he is called said he would see us, Tova was hysterical. I felt such huge guilt that I had made her rush straight off the bus, into my car, into the old smelly pram with flat wheels, run to Monash, sit there hungry and tired (She had just had swimming at school too, so extra hungry), then the moron wanted to scrape wax from her ears. She lost it. I couldn't focus and told him that I had to leave and couldn't think straight and to make us another appointment. he was so annoyed. That annoyed me more. How dare he.

WHen I was rushing out a nurse said that the office staff had all gone by now.. that annoyed me too.. omg, not only were we LAST, we were still there after staff had gone. The nurse said she would make us another appointment and ensure that we went to the top of the list.. OMG YOU THINK? For fux sake. But yes, thank you nursey. Not sure why you didn't say something to me a few hours earlier, but thanks in advance for next appointment.

Poor Tova. Then we rushed home, I fed her, gave her a drink and had to wash her hair in the bath. She hates her hair being washed and brushed. So then I had to brush it.. Then I had to give her the injection.. OMG. She has had the shittest afternoon and evening.

EVERYTHING SUX, but not quite everything. I just wish everything would be 'normal' for her. Enough with the things she hates. Wow she was sad in the ent, I have actually never heard her cry so loud. It was good to see she can be so loud but really upset me.

I haven't seen Nissim since Wednesday morning, I miss him. He went to creche on Wed, mum picked him up. He stayed with her last night and again tonight. I will see him tomorrow night.

Oh and I went to the dentist today for a crown, lovely dentist but it makes me tired being scared.. NOT COPING

That's all.. I am going to bed to watch trash now.. and recover. Tova went to sleep the second her head hit the pillow. Little angel.


Oh one not sucky thing is Tova's special and crazy expensive (but fully funded by Uniting Care - Thank you) shoes arrived today. They look and smell amazing. So new and clean.. I am excited for her to wear them tomorrow.

We are Home

One thing that really blows my mind is that we didn't end up in hospital while we were away. Statistically that seems impossible. I went to bed worrying every single night for 5 weeks. For what ever reason Tova stayed strong, i am so grateful.

I have since returning home the other day, discovered that amazingly, Tova's school uses Conductive Education Principles in its every day practice. So, now that Tova has the foundations set, the school are going to bring the best out in her. It is brilliant!

I rang the CPEC place today, the one that Tova has been on the waiting list for, for about 4 years. The place that has never returned one of my phone calls over the years, nor emails, the same place that when I have gone in there in person begging for help no one has been available. I actually got to talk to someone today. They seemed very busy and didn't have time for me. The lady I was talking to put me on hold with out explaining to me what she was doing and all of a sudden  I was talking to someone else. It was all very confusing. They are quite unhelpful and rude actually. I am sure they can't be so busy that they are annoyed so much that a parent would be calling about helping their child. Very strange organisation. Anyway. They have told me that they can't help Tova with the conductive education program they have after school because Tova hasn't been through their early intervention program (the program she has been on the waiting list for four years and is now too old to attend). So what ever! I wonder if they are that rude to everyone. Maybe they have a tough love approach that really works.. who knows. It is a shame as Tova goes to school in the building next door to them.

Perhaps I don't even want her in a program with such negative people. I don't know. I actually dont' mind if they are rude if they get Tova to walk and eat properly!

I feel jet lagged today.
Tova is at school. The bus came to get her. I bet she is having a great day.

Journey Home

We made it home!

We went to the airport at about 12 mid day as that was our hotel check out time.
We didn't have to pay for our very heavy one suitcase because the lady at the airline desk was lovely.

We went through American customs in Toronto.. helpful! This meant that we didn't have to see our checked on bag until Melbourne!

Our flight wasn't until about 5pm, so we had loads of time to kill. We wandered around, ate food, sat around, watched the Ipad, talked to people and finally set off for Chicago.

We got on the plane first. I sat Tova next to the window so that she wouldn't fall off the isle seat nor bother the person sitting next to her (other than bothering me, which is fine of course). The guy that had booked that seat was quite horrified that she was sitting in his seat. I offered to move her after explaining that it was for safety reasons and for his own sanity, he wouldn't talk to me. I even said that the flight attendants would move us or him, or any combination that made him happy. He still wouldn't talk. I think he must have a diagnosis of something, so he is excused for being a bum head. Not his fault, unless he is just a fartface. Anyway. I got to talking with the mum in the seat in front of us and wished so much that we had all been seated together. She was great to talk to. Her daughter has some special needs and she was moving cities to be able to get better education and therapy for her child.

When we landed the horrible guy next to me wouldn't move, even though I had told him I had 40 mins to get to my next plane and had to run, he did get up to let me out when I physically got up and started walking into him.

Tova and I ran to our next plane and bored the second we got there. That wasn't fun.

This flight was about 4 hours. I don't remember much about it. Boring. Actually, that story above may be from the Chicago to LA flight. I am not sure what happened on the flight from Toronto to Chicago. It was quick, we ran off right away to get our flight to LA.

When we got off at LA we ran to our next boarding gate where we found out that our flight was delayed. So I was able to catch a breath.
It was midnight for Tova by then. She was completely wrecked. Crying, blotchy face and ended up falling asleep in her pram. When we boarded the flight I lay her down on two seats until we took off. The flight attendant moved the guy in our row so we had 3 seats to ourselves. When we took off I sat Tova up and she remained asleep. She stayed asleep for 9 hours. Then stayed awake until we got home yesterday in the evening. I don't know what that means in hours, but she stayed awake for ages.

We got to Sydney, had a short wait, the quick flight to Melbs. The ipad lost charge on the last leg half way through! What a brilliant invention!

Customs was easy, I said we had chips and maple syrup, they said, great, see ya!

I took a few deep breaths just before the doors opened to the public part of the airport where I knew a Yuval was waiting for us. I thought I could probably just almost hold it together and not cry when I saw him, but then I noticed a little Nissim and it was all over for me. We fell into each others arms and yep, he made me cry coz he is so cute.

I didn't see Yuval and Tova see each other, but Yuval said Tova ignored him. It wasn't until we got to the car that Tova wouldn't let Yuval put her down. She was clinging on so tight. It was beautiful.

Tova was completely fine. She stayed awake all day with no problems, I wanted to sleep so badly. I really struggled, and I think i fell asleep for 30 mins on the couch at 4ish. After dinner and bath we put Tova to bed at around 6 and I passed out at around 6.30pm. Nissim kept Yuval and I on our toes every couple of hours last night, waking and wanting to come into our bed etc...

Ok, so now it is Wednesday. Yesterday Yuval, Nissim, Tova and I went on the hunt to get her a big girl bed. We ended up trying out new prams and buying two wardrobes, one for each child. They were half price and they are perfect. So that is good.

Tova and I went to bed early last night.

This morning the school bus came and collected Tova, I took Nissim to creche.

I then went driving around FREEEEEE and went to a bunch of shops. Now I am home. For the first time in forever I am home alone. I feel terrible, tired, but happy. I wonder how school is going.
We turned the walking frame around but it is a bit fast for Tova with 4 wheels. I wonder if they are using her canes too? I will call them later.

One really lovely thing, amongst many lovely things, about this school is, when the bus came this morning, the bus monitor knew all about our adventures because she has been reading this blog. I think that is really sweet. Everyone one in that school loves the kids.. Well at least they love Tova! How could they not!

Canada Beanie

Day Thirty-Two and Niagara

Where to start.. Well firstly, it feels like 'more has happened' in the last 2 days than over the past 5 weeks. Not with regards to therapy of course, which was the entire reason we were here, but to do with interesting things and touristy things.. now just to figure out where to begin with the story... the start right?

Thursday. Tova went to class in the morning. I did the final touches on packing, then worked, then paced the building feeling lost once I had turned off my computer at around 11am. I spent time talking to Tracy, the mum I developed a good relationship with over the past 5 weeks. She is amazing and actually, if it wasn't for her, not sure that I would have managed mentally for the 5 weeks. The other parents were all just as amazing, but Tracy and I seemed to make a different connection. Anyways.

One of the adults that had been doing the program when we first arrived at the camp came to pick me up with her husband. They live locally. We had to leave before graduation was over, so Tova missed out on the party and amazing looking cake. I feel quite sad about that, but we had to get a train.

I didn't think I would get all emotional, but actually, when I grabbed Tova to go I couldn't talk. I kinda just ran out the door not able to say anything much.. How embarrassing. I am such a wuss. Rude too, but I didn't mean to be rude, I just hate crying in public. AND I didn't even end up crying. I probably would have if I was with Yuval or other family, but I was with people I hardly know and so, did't cry.. .

We drove VERY SLOWLY to the train station. I felt very extremely grateful for the ride to the train station in Bellville, and sad that we missed the graduation knowing that we could have stayed at the camp longer and then just driven faster than 60/70kmp, and made it to the train at the same time.. but the people I got a life with are lovely and it is all good. I was feeling emotional and stressed about traveling so not really sure how to deal with all that.

So, Tova and I got on the train... It was a beautiful, comfortable train with free wifi. I think we were moved into first class because that is where assistance was to help us get on the train.. What ever it was, it was comfortable and fun, heaps of fun. Tova is a great travel buddy. I was scared traveling with her, alone, in a foreign country, but she took it all in her stride watching her ipad and looking out the window. I am so very proud of her.

Not much happened on the train. Just sitting and looking.

We got to Toronto. We found our bag and checked it in the bag place for the night. Then made our way with MUCH confusion and worse than Melbourne signage, to our next train. Train to Burlington. In the end we found it, got on it and sat again. Tova being perfect all the time.

I actually worked out that we got on the wrong train but to the same destination. So it didn't matter, it was actually good because we had enough time to meet the bus, which we probably would have missed otherwise. So that was clever.

When we got off the train at Burlington a lovely lady showed us where to go to find the bus and she gave us her cookies (which of course, being the germaphobe I am, we didn't eat, I am sure they were perfectly fine, but.. ).

We eventually got on the bus to Niagara Falls.

Again, Tova perfect....

Once we arrived a lady who had been on our bus and who lives in Niagara Falls drove us to our hotel. We hadn't spoken on the bus or anything, she just heard me ask how long it would take to walk to the hotel.. NICE!!! That walk would have taken forever!

At the amazing hotel I asked for the best room possible (we had already paid for our room).. I explained that we had been stuck in the middle of somewhere with no car learning to walk for the past 5 weeks and we really needed to have something special to remember from Canada, something touristy special.. He put us on the 40th floor with the most unbelievable view of the falls. I mean seriously, unbelievable.

We got settled in and went downstairs to eat. I ate almost a weeks worth of food. Tova ate too, and entire bowl of guacamole and some fish and mashed potatoes. We are pigs. By the time we got back upstairs it was about 10pm. I don't mind, we are about to have serious jet lag, so what difference does it make. 
So any fat I didn't put on over the past 5 weeks, I put on over the past 2 days, that is for sure. 
 
After dinner we looked out the window and Tova went to bed.. 
 
In the morning I woke up at something like 7.45. I was lying there for a while and then heard whimpering. OMG, I looked over and there was NO TOVA IN HER BED. I leaped up frantically, where the fruck could she be? I had put about 10 pillows around her bed on the floor in case she fell out during the night. But she wasn't on any of them. I started picking them all up like a mad woman. I found her, under a pillow and wedged under her bed. FUCCCCCCCCRRRKKK. I almost threw up. Not sure about anything. I don't know how long, I don't know, I just don't know. I wish I could was my eyes from the vision. I don't want to keep seeing it. I grabbed her, scooped her up in my arms and put her next to me in my bed. She was still all sleepy. She was fine. but omg, omg, omg. How revolting. 
 
We skypedYuvie. Tova was more interested in watching the wiggles so, see ya aba! Sorry! You aren't as cool as the wiggles this morning! 
 
I went and checked the fridge and freezer that had been delivered to my room last night. They guy came up last night with two fridges, turned one down to freezing and the other to normal. I asked him a bunch of times which one was which and he told me.. well dude. You were wrong. The growth Hormone and other meds all got frozen, while the ice packs all melted. I tried to google the dangers of using frozen growth hormone etc. Not much to find other than DO NOT FREEZE.. Stressful. 
 
We went for breakfast. It was a free buffet, GROSS. I hate buffet food.. disgusting. But I had to feed T. So I grabbed a heap of bananas and porridge. The staff were amazing and helped me. Tova must be quite obviously 'special needs' to the public, because no one questioned me about needing help. Interesting. So anyway. The staff were very helpful, even though they weren't supposed to do table service or anything, they did.. Tova didn't like the porridge and ate 3 bananas. I took the fruit with us when we left. 
 
Check out was at 12 so we slowly got ready while being very distracted by the view from our room. Last night when I first walked in I swore. I mean, wow, what a view. 
 
We wandered around the falls for a few hours before we had to go get the bus. We mostly just spent money on food and gifts for Nissim. Tova didn't like the soup I got her, so I got her a muffin. It is really very difficult to eat out with someone that doesn't chew. I have given up almost, and now just feed her cake. That tim/tom Horton place is great because they the muffins for 1.25 or what ever they are. Tova is pretty much living off them today and probably tomorrow. 
 
We got a taxi to the bus, got on the bus, got back on the train from Burlington to Toronto. Met a great guy on the bus, that helped us on and off the stupid train that had no ramp. Then he walked with us to get my bag, and then out to the street to find the bus to the airport. It was tricky as it had been moved and where it was moved to, had no sign. But we found it and he wandered off. Thanks nice man.  
 
We got on a small bus to meet the big bus to take us to the airport. A lady let me use her phone to ring the hotel to ask them to come pick Tova and I up. We arrived at the airport and a few moments later the shuttle arrived. We got to our hotel and they told us to go next door because we have been upgraded. Nice. 
 
WOW, what a room. This place is lovely. Nothing to see out the windows, but so nice in here. Clean and new and fresh. I am impressed, especially as if I remember correctly, I didn't pay much for this room when I booked online the another week. Probably less than $100. 
 
It must have been around 8pm by the time we go here. We went down the road for dinner. We went to an irish pub. Tova fell in love with the Chinese, Canadian Musician playing his guitar and signing bob Marley songs. We ordered food and took it back to our hotel. I ate most of it, she ate some. 
 
She is now sleeping on a mattress on the floor thank you very much. I said to her she is welcome to fall off this one! Which she is currently almost doing. She is such a mover in her sleep, which is why I hate sleeping with her so much.

So that is that. We have met some amazing people over the past 2 days. Lots of people want to help us, no one has been scary, and we have had fun. Tova has been very tolerant the entire time. Thank goodness for the ipad.

This is our last night in Canada. Strange. wow, I am going to fall into Yuval's arms (after Tova of course, so perhaps in a few days, when they let each other go) and I am going to let my little precious most wonderful son in the universe fall into mine while I present him with his many gifts.

HOME TOMORROW, sort of.. we have to fly for 30 or so hours first, but HOME! I am looking forward to getting Tova moving using her canes and making her walk using her walking frame everywhere, even in the house. That is going to be reinforced, If she wants to get somewhere, she must walk!

Eating next, we will get her self feeding, then move onto solids, omg, and one day i can just hand her a sandwich and say, 'there ya go'. I can only imagine how easy life would be without worrying about having puree something all the time.

right.. photos. I might do them when I get home. Too tired right now.

Tova Touching the Waterfall
Niagara Falls Canada - USA View

Day Thirty-One

NO MORE HYPERBARICS! That is a nice feeling. Bitter sweet actually.

Sad because it is possibly doing Tova a world of Stem Cell good, and good because it is so very boring and tedious being locked in a little chamber with 3 other adults and 3 other children. That is  lots of people for such a small space.

Tova had her little video session today. I wasn't allowed in, so Yuval and I can watch it together once we figure out how to watch an American dvd on an Australian player. Perhaps we will never get to see it.

The interview bit was me talking to one of the therapists. We talked about Tova and her progress. She asked if I would come back. I said yes, but I would prefer my husband to come back instead, as long as the returned him. I remember Austria wanted to keep him because he is so fantastic with kids and people generally. I MISS MY FAMILY.

Another beautiful thunder storm tonight. Again, short but amazing.

Tomorrow Tova has class and then we are catching a train outta here.

Day Thirty

Only 2 more hyperbaric sessions to go. Tomorrow there are two. There isn't class tomorrow for Tova. There is a video and interview or something.

Today was fine. All the parents attended the class today (well all except two mums that left for the day to get tattoos while their hubbies sat in the room with the rest of us.. clever mums).We were on one side of the room, on very uncomfortable stools watching the kids have their day of therapy. It  was cute and fun to watch  most of the time. I did have to fight falling asleep standing up at one stage (we didn't only sit there, we also did work with the kids). Tova had woken up at about 4am this morning and I am really tired.

In the class today Tova took about 40 steps with the canes, she only did her fake falling a couple of times. She is VERY wobbly, but wow, she is improving already so much. Amazing to see. I had tears in my eyes. I know that it isn't 'walking' but it is closer. I have chosen to celebrate her wobbles, because before we got here, there was no way in the entire universe that she could do this. The therapists say that the only thing holding Tova back is her attitude. We will work on that. She's a clown.

After lunch was the chamber. I fell asleep in there. I had no choice, I just couldn't keep my eyes open. Tova let me mostly. It is kind of magnificent falling asleep in there as time passes so fast. I could have happily stayed in there for a few hours, sleeping.

Tova and I have completely run out of food. Well, we have oats, avocados and bananas.. We are leaving on Thursday, so hopefully there is food on the train to Toronto. Or we will be living off oats all Wednesday and Thursday.

I am so very much looking forward to SHOPS, being able to go buy milk when I need it. This has been a horrible experience living with no car and no public transport and no way to get anywhere. I am sure no one can live like this. It is HORRIBLE.

There have been a few thunder storms here for the past few nights. Really beautiful, very quick and very loud. The days have mostly been quite warm and sunny, which is nice considering we are going home to winter. Not that Tova and I have actually be outside for however many days. We did go outside today to pick Lilacs.

Wow, 30 days of therapy done and dusted. We most certainly have a changed Tova and motivation and tools to go home with. This was the right thing to do. I think Tova's life will change from now onwards..

Day Twenty-Nine

The last week!!!!

Things I am looking forward to the most are being able to go to the shops, not depending on others, having personal space, doing laundry every day, cleanliness, easy to use kitchen, the boys!

Tova woke up really sad this morning. She was in a deep sleep so I asked Yuval on Skype to wake her up. She was so fast asleep. I patted her to wake her a bit and after a few minutes she just cried and cried. So unusual. Yuval and I were worried. Poor tinky. Well anyway, it seems that it was just a waking up from a deep sleep thing as after about 10 minutes she was laughing at Yuval and ready to go have breakfast.

Off to class today. Today is the last proper day of class. Tomorrow the parents are in the room all day and Wednesday I think each child and parents go in the room separately for some amount of time. There are also two hyperbaric sessions that day. Thursday is graduation. Friday they have a short day, but actually we are all leaving on Thursday. So the staff will get a long weekend before the next group start. I assume there are people starting next week. Not sure.


Body attack again this morning. It feels great to at least move once a day. No more outside for me nor walking/jogging to that lake. Too boring. Too many flies. It was so fascinating for the first couple of weeks. Now not so much.

Day Twenty-Seven

We did our first Hyerbaric session this morning at 9am. Then Tova and I went to our room. I did BodyAttack and she watched the wiggles. I was jumping around next to her for 55 mins and I think she only looked at me out of the corner of her eye twice. She a good girl. She watched the wiggles standing leaning on her bed. She has been doing quite a bit of that standing leaning stuff.

Lunch and then the next hyperbaric session.
Boring and frustrating. If only I could have the ipad or Tova's shows on every time, it would go so fast. No one likes it in there.

After that session I gave Tova a muffin.. since we have so many.

The we went to the therapy room to have a practice with the canes. Tova is so difficult. She just won't do it. She does the pretend fall thing laughing and lays on the ground saying no.. Very frustrating. Even bribing with singing didn't help. I remained patient and eventually got her to take a few steps. I have never seen her so stubborn, it is great but frustrating.

This afternoon I offered to take her out the back to the playground. She cried and said no every time. Eventually I took her anyway. we were out there for about 15 mins then back inside. Tova was pretty much a sad sack for the rest of the evening. Even not wanting to talk on skype ot the boys.

I just hope so much that she isn't getting sick.. well I don't mind if she gets a little bit sick, but not hospital sick. Not sure that I would cope.

She took ages to go to sleep, it was about 9pm when she finally fell asleep. Her breathing seems fine.. I am a bit scared.. hopefully for nothing.

One week to go! I have another week to eat and eat and eat.. which is all I am doing here at the moment. Good thing I don't have car or I would be at the junk food store every day..

So.. here is hoping for a very boring night and rest of our stay here in Canada..

Day Twenty-Six

$6 for 6 muffins and a coffee.. madness.. great madness... What is that at home? About $20!!!

what $6 can get you in canada
$6 goes much further in Canada

Day Twenty-Five

One week to go. It has gone way too quickly.

So, I just had the individual session with Tova in the class room today. I was expecting more of the same big fail and cheekyness. Even though the therapists assure me that they have seen Tova walk a few steps independently with the canes.. I have never really 'believed' them.

WELL! oh my goodness, I mean seriously, what the f### just happened? Tova the incredible! I can not believe my eyes, she took about 4 very wobbly but completely independent (meaning without an adult holding the stick nor holding her) STEPS using the CANES! UnflippingReal!

We have always known she would do it 'ONE DAY', but it just goes to show that practice, practice, practice and tada!!! She is absolutely terrible at it and can't be left alone with the canes as she will just fall.. But I can see it won't be long, with lots of practice, she will be walking with canes and not the walking frame in not time! THEN walking with NOTHING! Tova is amazing.

She looks so pretty today, she has Yuval's eyes and they are sparkling.

Maybe I will make her cake as a reward (or punishment as there is only white peroxide flour here and I have no way to get to the store to buy real flour).