The Tovington Post

The night was a bit tough. But Tova made it with no hospital nor pred. I possibly could have given her pred during the night, but she was sleeping through her noisy breathing. I didn't want to wake her.

In the morning I watched her for a while and it was obvious that she needed Pred. I gave her some.

She went as white as a ghost (it always does that to her), and her breathing improved.

We went to the shoe shop that sells Piedro Shoes and got Tova some Sandals. I wanted black, they only had pink.. so I got her pink.

We had lunch on Melbourne Street, which is a very beautiful street. The cafe pureed Tova's eggs on toast with no questions asked. Tova was still breathing a little bit silly and not quite herself. 

We spent the rest of the day doing not much.

It is starting to feel like summer! 

There are pigeons outside our room that have just had babies, which is very cute. The babies are mostly quite all day but then they get hungry and ask their parents for food. And then, wow when the parents do come home with food - the babies let the world know how excited they are. 

This morning Tova woke up with slightly noisy breathing, but nothing that really worried me. It of course made me hope to heck that it does’t turn into anything worse. 

I took her to Future Footprints, she was happy to show me all the things she likes to play with, but VERY unhappy when I said I had to go. She cried and broke my heart into a billion pieces. 

I was assured that for the rest of the day she is not sad like that. 

The people that work there, and run that place are lovely. Lovely like the Graz team - genuine. I felt better for hearing that she doesn’t cry all day (which of course I know, but it is nice to hear). 

I went and got us some supplies for the weekend as who knows what shops are actually open in this big little town. 

When I picked Tova up she was walking using canes (and a human helping her). They put weights on the canes to help stabilise them. Good idea. 

While waiting for Tova to come out of the class room I was chatting to some other parents. Some of their stories are just so unbelievable. The horrible things these kiddies have had to go through already in life, just to be alive is amazing. 

Tova was over the moon to see me. Nice!

I was listening to her breathing in the car and when we got home. Not perfect. Not great. 

As I have no idea where I am or where anything is I rang the ‘home visiting doctor’. They came out here a few hours later and gave me a bottle of Pred! I couldn’t believe that I didn’t have to schlep Tova out and try and find a late night chemist. I had to fight back tears. Thank you Dr Hans. 

So now I have that if Tova needs it. I hope not. 

If Tova does need it hopefully it will be enough to avoid going to hospital and having Adrenaline or anything worse!

I’m pretty over this. It would be nice to just relax each night and not have to worry all night about calling 000 and everything that goes with that. 

Here is hoping for a VERY boring night and another day of therapy tomorrow, followed by a weekend at the beach with my lovely Tova. 

Tova is ready for the weekend. She likes her days of therapy, but keeps asking for TV and a bit of a break! Fair enough.

I have noticed a few changes in Tova. Little things that are huge for us! For example: This morning I was getting ready, so I had the TV on for Tova on ABC for Kids. Giggle and Hoot asked the kids watching to roar like some character they were talking about or to.. and Tova did! It was great!

Driving home today Tova noticed an unusual building and pointed at it asking me to tell her what it was and talk about it. Also very cool!

The bed shuffling is also very interesting as she takes baby with her. 

These little behaviours are new and great!

The physical side. Well she refuses to let me pick her up. She wants to walk EVERYWHERE!

We miss our boys! 6 more days and they will be here!

I did the body attack in my room today. It was fun! I warned the hotel manager that I would be jumping around and if the people in the room below me had a problem to let me know. She laughed. 

This hotel is OLD, so the floors and walls are double brick and built well, I don't think anyone heard anything. It is a great room. 

We arrived early to Future Footprints today. I give myself time to get caught up in peak hour traffic. Well, it is a different concept here in Adelaide. Peak hour in Melbourne is horrible, here not so much.

Something I have noticed about Adelaide (the 3 streets of it I have seen), there are heaps of Vets! An unusual amount. I love a city that loves animals so much!

Apparently Tova had a good day today. She was so excited to see me when I picked her up. I love it!

It is nice to talk to the other parents while waiting for the kids to get out of class. Everyone knows so much useful info.

This morning I found a gym that had a BodyAttack class so, I asked for a free pass, got one and did the class. It was only half an hour, but that is ok, they chopped out the tracks that I find 'boring' anyway.

After I got Tova we drove down the road to the beach. Glenalg (sp?). It is out of this world. What a massive beach and a crazy indoor lunapark/water world place that has a ferris wheel out the front.

Tova wants so much to go on the wheel. She cried when I said no. Not sure why I said no, but I didn't feel like it. Perhaps on the weekend. She was unimpressed!

She did make me walk to the water and take our shoes off so we could walk in the water. She wants to go swimming. I think the weekend will be hot, so maybe then.

The boys arrive in a week!!!!

Tova has not played musical beds this evening. I think she is tired.

I love this apartment, it has such a good feel to it. We are happy!

Tova seems heaps more focused in only the past few days. This therapy is very impressive. I am a very big fan of Conductive Education!

The staff at Future Footprints are still outstanding! I love how they treat Tova. I'm not sure where they get all their energy from to do what they do all day, but they are all happy and inspiring when I get Tova at the end of the day. 

Tova was a bit hesitant about going to class today. But happy enough. I told her I was going and she made sure that I told her I was  coming back to get her. I think some times she is worried that she will have to stay places for ever! 

I chatted to some dads who were dropping off kids on the way to work and then went on my way back to the hotel to work too. I wish I had stopped at a gym, but nope, I sat for the entire day working.

Tomorrow morning I am either going to a gym or doing the Attack on the usb. 

When I picked Tova up I chatted with the other mums, they all seem lovely. Their kids are so cute. All the kids seem around the same age ish. 

I think Tova had a good day. Her face lights up so much when she sees me. It is the happiest face I have ever seen!

I drove to pick Tova up with no GPS and the same on the way home. I feel like a local, as long as I stay on the three roads I know. 

Katrina and Jack visited Tova and I this evening. Katrina is my biological Sister, which makes Jack my nephew. He is remarkable, I'm pretty proud to call him my nephew! Tova's cousin! It was great to catch up with them (and their friend also named Jack). Tova was watching the sound of music and made it quite clear that she didn't want to be disturbed by anyone. hehe.

Jack is keen to catch up with Nissim and Yuval when they are here too. 

Adelaide has a nice feel to it. 

Tomorrow we do it all again. 

I am very impressed with Future Footprints, I highly recommend it. They run programs all through out the year, not  only intensive programs like this one.

After dinner I gave Tova a bath, read her books (in one of the single beds pushed together), went out of the room to let her fall asleep. I did tell her to stay in the single bed that is pushed up against the wall so that she doesn't fall out. She nodded. I went back in later to find her in the double bed with baby, baby all tucked in next to her. She is so cute. I am pretty sure she does this for my amusement because I talk about it to her in the morning when we wake up. She laughs. 

We left early just in case. There is no need. We are CLOSE! 

The moment we arrived someone greeted us and showed us the way in. Future Footprints - the people doing the Conductive Ed program, have just moved to a new building, there is no obvious signage. We were greeted by the most lovely husband (covered in paint) of the owner/organiser. He helped me with all Tova's stuff.

Once in Tova looked around quietly, not clinging to me, which was nice. She was curious but cautious. However a few moments later she was whisked away and didn't look back. She felt comfortable from the word go. Lately Tova has been a bit clingy and sooky at new places. But not here. I think she really liked seeing the other kids and also the staff are lovely. Everyone was lovely to her. She did a puzzle and got comfortable.

I asked what was expected of me and pretty much told that I can leave (or stay if I want), I left after a quick intro in to Tova and her eating etc. 

I went food shopping. 

And then Internet Shopping. 

We now have food and internet (but now no money). 

I love this hotel! It is so big and bright and clean. It is a bit lonely, not like Canada where we all lived in the same building. 

I met a mum today, she seems very nice. Local. I told her about Lively Eaters. 

My boys are on my mind. It would be nice to have them around. They are visiting in a week or so. 

Tova had a great day. I hope she has a great day tomorrow.

When I picked her up today she was so beautiful that I almost cried. I had to fight back tears. I think because she was so happy and we came such a long way and it is a success from the word go! 

We shall see what the weeks bring. I have a good feeling, why not!

Tomorrow I start work as we are now all set up. 

Tova has been playing musical beds, tonight she and her fav toy 'Baby' are in the single bed. I think I will push the double up against the single and have one massive bed. 

It is cute to find her in a different bed each night. 

I'm feeling a little horrible, I have pretty much lived off junk food for the last few days and haven't been to the gym for too long. Maybe tomorrow I will jump around to the body attack video I have (given to me by someone very kind). Or perhaps I will just keep eating! Only tomorrow knows. Nighty night. 

2014-01-05

Tova and I set off on Saturday morning at 10.30ish.

I packed everything. I pretty much just took every single item of clothing from our cupboards and shoved them into two suite cases, then went around the house grabbing 'stuff'. It was GREAT because usually we go by plane and can't take much. So much thought goes into packing. I didn't think much on Saturday morning, I just packed.

So with a full car we set off. Tova watched movies pretty much the entire way. We did stop every few hours, sometimes to eat, sometimes to play. There was a park somewhere like Horsham that we spent some time in. We met some other kids driving from Melbs to Adelaide, they were cute and fun to talk to.

It started getting late so we stayed the night at a motel in Kaniva. It was fine. Tova slept in her own bed. I let her decided which bed she would sleep in or even if we would sleep together. She decided to sleep in the single bed and she actually stayed in it all night, covered even. So that is something new.

In the morning we slept in a bit and took ages to get it together, we left Kaniva at about 10ish. Again we drove for a couple of hours, stopped, ate, played, drove and so on. Finally we got to Adelaide. In the morning Yuval had told me about a self contained hotel room that was sort of affordable (Still expensive) so I decided to check it out before heading to the Mother of the guy I met on the plane to Canada's house. Josh (guy from plane) is from Adelaide and his mother has a spare room and VERY generously offered for Tova and I to stay with her. I have been quite worried about staying so far from the therapy place (40mins drive each way for therapy each day). So I first went to one hotel room that I had found. I didn't think much of it. It would have done, but still a bit far (20 min drive each way to therapy). I then went to the one Yuval found. It is about 10 mins drive each way. It is GREAT. BIG, and clean and the owners are so lovely. It is a shame to be spending so much money on somewhere to stay, but it is going to be nice.

There is no net here. So I will have to sort that out tomorrow. Not sure how I would survive with no net.

I spoke to little Nissim on the phone today. It will be nice when he and Yuval come to visit Tova and I in about 10 days.

In the bed room here there is a double bed and two single beds. I pushed the singles together for Tova, but just went to check her and she is in 'my' double bed. So I guess that is her bed now.

I went to go buy groceries, but all the supermarkets shut at 5pm.. However, get this... they open again at 12am.. yep midnight. How strange. So, we don't have anything fresh to eat. I got Tova some noodles and veggies from the noodle/wok box take away. Yuk. But it is food and not so unhealthy.

Tomorrow it all starts.. Again. I hope Tova has a great day tomorrow. I hope I get a chance to go find the internet/dongle. Just like Austria.

Therapy, therapy, therapy.

Hello Adelaide. I wonder what it is like here.

Nissim and I are a bit sick. We have colds. It is so annoying! 

My poor little boy is coughing the same way I used to when I was a child, that isn't good! It scares people. I have drugged him and put him to bed (drugged with herbal cough medicine that seems to be the only one that ever works - Brauer or something). 

We spent much of today doing pretty much nothing. 

Tova wasn't breathing too well in the morning, so she stayed home too. She did have other plans but it scares me when she doesn't breath properly. So I took them to the beach, Yuval came with us as he started work at mid day today. It was nice walking along the beach.

Tova improved over the day and Nissim and I continued to feel horrible. 

In a few days Tova and I are going on a massive road trip to Adelaide. I have given myself two days to get there and will decide how I feel while driving. We can stop and stay somewhere overnight if we feel like it, or drive it all in one day. We are in no rush.

The boys will come and visit somewhere in the middle (they will fly) and then Tova and I will road trip it back a week or so later. 

My gym membership is now on hold as there are no Fitness First in Adelaide, which is such a shame as I could have used the gym there for no extra charge. Somehow I have managed to get my hands on the most recent few Body Attack videos, so I will jump around to those while in South Aus. Or I can always join a gym while I am there.

The second bathroom in our house is being renovated and the house is constantly a big mess these days, I am looking forward to being away from the mess and noise. The noise of the builders radio gets me the most, we have different music tastes that is for sure. But I am happy for them to listen to anything they want as they are doing such a good job.

I am also looking forward to seeing my older sister and family whom we recently met after discovering she existed about 4 years ago. They live just outside of Adelaide and are super lovely!

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. 

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.

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. 

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!

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.

Last week!

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..

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. Nothing else needs to be said!

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.

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.

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.

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!

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.

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.

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.

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.

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.

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!