Day Three

Day three. Pretty similar to day two. I imagine most days are going to be quite similar.

Skype with aba in the morning, that made Tova's day.

Breakfast, dressed and handed Tova over to the class room. They must be nice to her in there because she is happy to go in. I do feel a bit worried about the hands but I have seen them carry the bucket with a jug and water for hand washing, so at least there is that.

Two kids are sick today. I have forbidden Tova to get sick. One has a temp and one was vomiting in the morning (no fever or anything, so it was probably just one of those things). The poor parents had to spend the day in their room. Poor kiddies. Everyone is hoping that no one else gets sick. There is nothing we can do now.. Just wait and see. This is the life of communal living. I am worried but am not going to stress too much about it as it won't achieve anything. Anyway, Tova won't get sick.  I have some pred with me in case.

At lunch time a chiropractor visited the camp. He comes every Wednesday. Tova and I had a session, it costs extra but is only $18 for Tova and a bit more for me.

I worked during the 4.5ish hours that Tova was in her therapy. I am also doing heaps of eating.. not much else to do while trapped in the middle of nowhere in cold Canada. It started raining today, it looks and smells absolutely beautiful outside. We are in the 'bush' so everything smells so fresh out there. And it is all misty, I guess because we are near the lake (the same lake that feeds into Niagra falls actually. It is a 15 min walk from here).

Tova was keen to do Hyperbaric today. I am not sure why as she spends most of the time trying to get out. She handles the sessions quite well. I think we are in there for about 1.5 hours a day. I am also pretty sure it is bad for my skin being in that pressurised cabin, something is making my skin very dry, and Tova's hair too. She looks quite funny with her space-girl helmet on in the chamber. We can't take photos, but I will try and get someone to take a pic through the window perhaps.

There isn't much else to say. We didn't go outside or anything today, it is too cold and wet. Bring on summer... Then back home to winter.. :-(

Here is a photo of some kids (not this group) doing Hyperbaric therapy. I just want to show anyone that is interested the super space girl helmet that Tova has to wear during the therapy. It is funny.

hyperbaric-oxygen-therapy-canada

same same

Day Two

This morning I got up to my alarm at about 7ish. Yuval messaged me good morning. He really wanted to talk to Tova, but she was still sleeping. After a while I put the Ipad on Skype with the volume set to low, in the cot/crib/porta-cot with Tova. Yuval woke her and both their reactions were priceless. They are so in love. They did lots of songs together and were both lovely!

Then, breakfast, dressed and organised for the first part of the day. I passed her over to the therapists and ran away as fast as I could!

One of the other mums invited me to join her and her hubby to the shops in Picton. So, even though I have a mountain of work to do, I took them up on the offer as I need some food for my little Tova. I'm not really comfortable buying non free range chicken, but I feel that Tova needs some flavour so got some.. I did find some free range eggs thank goodness.. I think they were only $3 too for 12. So that is a bonus. The supermarket is very similar to ours but I don't recognise brands so it was a bit frustrating yet very entertaining at the same time. As I was going to the check out I realised that I had forgotten the pin number to the travel master card.... *sigh*.. ooops. So had to use an Aussie credit card..

Back to the camp to do some work for a few hours then Lunch with the kids. Tova was happy enough, so I guess she had a good morning in her class. The therapists said that Tova was upset a few times because she wanted to do her own thing and wans't allowed. That is fine and to be expected. The other kids were all happy and waiting for their parents and lunch. Tova is the smallest, eats the most and finishes before the other kids. Tova is the only one that doesn't chew. A few of the other kids need some form of help eating but really are very capable eaters of regular food. Come on Tova!!!

In the hyperbaric chamber at 2pm Tova was watching one of the other children eating one of those fruit roll up type things, Tova was fascinated. So hopefully she will continue to watch and eventually TRY some solid food, any food, I don't even care if she wants to live of maccas or chocolate. .. The chamber was boring and frustrating for Tova, but towards the end she started to play with a blocks type toy with her friend Little Miss K. I hope that behaviour continues. It is so nice to see them play so well together and Tova to play without me or another adult assisting her.

We went outside to play on the swings after that. It was nice to have some fresh air. Especially for Tova whom is on something like day 3 of no outside.. for no reason, just that she is so busy in here.

I made Tova a yummy dinner, then bath and bed. Not much to say really. She is tired. She is doing great.

This ability camp is for adults too. So there are a few adults wandering around and we all share the kitchen, which means we all get to talk. Everyone is lovely. There are people here for all sorts of brain injuries. It isn't really my business to talk about their stories, but wow, some people are amazing. And they aren't amazing for any out of this world reason, they are just amazing because they are and probably don't even know it. This entire camp is exceptional. The owner started it when his daughter was involved in this type of therapy growing up with CP, she is now married and has a new baby. The owner is generous and kind. I am quite overwhelmed by the kindness of the people here.
There are two dads here for the first week, then they go back home for work until the last week. They are both very helpful, not only with their own families, but with everyone. Today one of them did all the dishes for everyone and tidied up the entire massive kitchen. He is such a great guy, and their son is adorable, always happy and smiling and just a big bundle of cute.

ability camp canada

ability camp canada

Day One

Day one was fine. I have only one issue which I will talk about somewhere in this post.

The morning started at 8.30 after breakfast. Tova, the other kids and all the parents went to the 'class room'. We were shown the types of things the kids will be doing for the 5 hours a day over these 5 days a week.

The most interesting part of this is that Yuval and I had been inventing exercises with Tova over the past year or so. We have been doing these in the evening before bed (mostly Yuval recently as I have struggled to find the motivation). Things like doing the bridge, touching toes and so forth. Well, this therapy here is similar. I felt encouraged and grateful that Yuval and I have been open minded enough to figure these things out for ourselves mostly. We did have some small guidance from Bec, who was Tova's physio a while back, but Beck resigned and wandered off into another line of work the last I heard.

I was thankful that the day didn't go as slow as I expected, and I was very impressed with how Tova behaved and listened to instructions. She is amazing. I think school back at home has already had a very big impact on her. I feel bad that we are missing so much of this semester. But...

The therapy is good. The therapy is going to change Tova for sure, as Tova is so very motivated AND the therapists spend most of the time singing.. Tova is in her heaven. The therapists are all very nice too, which helps.

Things that I found a challenge are that all the kids are put on potties a couple of times during the 5 hours (that bit isn't' strange, that bit is good), but after 'toilet time' is over, they don't wash the kids hands. I was HORRIFIED and had to fight back tears. I really don't know what to do about this. It is so strange to not wash hands after going to the toilet I don't even know where to begin to think about what to say about this. How freaking revolting and strange. Of course I had to say something. They were very nice to me about it and have told me that they will wash the kids hands using a bucket and jug and won't put the kids hands in the dirty water. I don't understand why they don't' just wash their hands in the basin around the corner from the class room. So unusual and dangerous. I hope with all my heart and soul that Tova doesn't get sick, I can't even imagine how horrific it would be to have to go to hospital here, alone, so far from home. So yes, i am very scared about this. I also hate being the one that has a problem. It makes me so uncomfortable. But what can I do? It can be a matter of life and death if someone gets sick from gross stuff like gastro. gawd.. how strange. I just can't believe it.

So other than the no washing hands, which to me is actually HUGE, the therapy is good.

After therapy we had a break for half an hour then into the hyperbaric O2 therapy chamber. Tova was very interested in it all, she happily put on her collar thingy and came into the chamber. We drank heaps of water to stop our ears from hurting and then it was time to put the helmety thingy onto Tova. She let me.. She was ok. But she didn't like it. One of the other families was kind enough to provide Tova with a Winnie the pooh dvd as ours doesn't play on American players. So that was good, but Tova was too focused on the hood-helmet thing to get into the movie. Hyperbaric therapy is b  o  r  i  n  g for us adults, and for the kids too really. It goes for about 1.5 hours. Tova will have it once  a day during the week and twice a day on the weekends. If it does amazing things we will probably try to continue with it at home. There is a center in Toorak that does it.. with the toorak price...

Tova and I are pretty sick of each other. Tomorrow morning I hand Tova over at 8.30am and get her back at 12.45 or something (I can't remember the exact time). So when they told me I had 5 hours off a day, it wasn't true. But anyway. I will work around her and I have the electronic babysitter with me so I can work.

Everyone here is friendly and kind. Everyone has an accent. There are quite a few conversations about Coffee, which is fun as I am a new coffee drinker.

We miss our boys. I miss having a car.
We haven't even been outside today for one second. The gym is going to love me when I get home, or I am going to love it.. for sure.

I have been told about a cheese factory nearby.. YUM. They even have maple cheese.. I wonder if I can take that back to Aus.. I will google it..

Last night Tova was awake from about mid night to 4 am, but she was in good spirits all day and now put to bed and fast asleep by 6.30pm. I hope so much that we don't wake up tonight. It would be nice to be over jet lag..

I wish Tova's friend Taylah was here.. she would be amazingly helpful. The only thing is that I don't think the other mums would let me take her back home with me. If we come back I am going to find a way to bring Taylah. There are a few dads here for the first week, helping out.. it makes a huge difference having help. Especially for the Hyper chamber. So Taylah, get ready for a trip to Canada one day.. and just 1.5 hours of work a day! Pretty good deal right? Or come here now!

I cooked amazing food for the first few days, but tonight couldn't be bothered.  I have to go to the shops and get Tova some free range chicken n stuff.. Hopefully I can find soy yogurt too..

Very happy Tova on a swing in Ontario
Tova on the swing at ability camp canada

Travel Stress

I am going through waves of stress and calm. I am not sure why it is stressful packing for overseas, it isn't as if we can't get pretty much everything in Canada. 

The only thing that is properly stressful is organising the Growth Hormone for travel. We have to ensure we have a letter from the doctor stating that Tova uses growth hormone and how much etc. I have to ensure that it is kept cold. So ice packs and cold bag are ready to go. Once on the plane I have to find an understanding flight attendant that doesn't mind putting the icepack in the freezer and the hormone in the fridge.. Then I have to remember to take it with me when I leave the plane. I have to take it on as carry on in case my luggage goes missing. So I will have more than I want to carry in my carry on. Which isn't so much fun as I have a 13kg beautiful child that I will have to carry too. Fabulous.

Ok, enough complaining.

Other than dreading the flight with a 5 year old, it is all pretty exciting. We are excited to see what changes happen in Tova after this adventure.

Tova is loving being back at school. The new school bus has arrived, it is fantastic. White, new, quiet and so clean. It looks like a mini coach.

Nissim and I have been slowly painting the cubby house out the back. It is a big one and we both get bored pretty quickly. It is however, almost done. Once done, and when I get back I will post a picture of it.

 

Getting to Camp

Ok. We made it.

The flights were all good.

Melb - Sydney was no problem, that is a quick flight.

Sydney - LA was long. Almost 13 hours. Tova was amazing. She ate, watched movies and slept. She didn't sleep much, at about 9.30pm Melbourne time she passed out on 2.5 chairs (we had 3 to ourselves). She slept for 5 hours.

When we first got on the plane the girl that was assigned the seat next to Tova took one look at where she was going to sit and looked horrified.. YAY!! haha. That was my plan. I was hoping that would happens so they would ask to be moved and we would get the three seats to ourselves.. and she did and we did.. It was great. She was all "oh no, but I want to sleep for this entire flight, I have to sleep for this entire flight... ".. haha. I said "oh yes, you don't want to sit here then".. I didn't want to tell her that Tova is non verbal, therefore QUIET.. haha. see ya lady!

We made friends with the 2 men in the seats in front of us. They were on their way to a crazy American road trip, and are quite possibly on the same plane home with us. I hope so, they were lovely. It would be fun to compare notes about our experiences over the 5 weeks. Josh and Cameron! Hi guys! I hope you are recovering well from the jet lag. I think Tova and I should be recovered by tomorrow. I hope.

I also slept little bits on the plane.. I think. My memory is a bit hazy now. We ate stuff, and shared the food we wouldn't eat with Cameron and Josh. It was almost like having Yuval and Nissim with me.. :-)

The flight attendants weren't very nice. Well, sometimes some of them were. It was a bit confusing actually. There were a couple of older flight attendants that looked like they were completely over working and that the flight was long and they were tired at the beginning of the flight. I heard one snap rudely at a passenger right at the start, even before we took off. I was thankful she wasn't on our isle.. But they wouldn't let me put the Growth Hormone anywhere cold. That was very disappointing. I don't know if it is damaged now. The cold packs were completely defrosted by the time we got to Toronto, but it was still coldish in the cold bag. I think the pressure in the plane made some leak. The bag is a bit wet (could be from the ice packs too), but also smells like that hormone. Yuk. AND when I gave Tova her injection last night, I had to do 6 clicks of air.. so perhaps 6 days worth of hormone leaked? I don't know.. well I am still going to give it to her. I just hope that it isn't damaged. It was such a big decision to even give it to her in the first place. I don't think there will be any left to keep cold on the flight home, so I may not have to worry about that.
So, I am pretty unhappy with the flight about that.

We got off at LA. We had to collect all our bags and pass through customs. That was a bunch of lines and waiting. But we had fast track cards because we were connecting flights, so we were in the quick lines.. they were still very slow. Tova did well. Nothing much happened, I was asked a bunch of standard questions, got finger prints scanned and photo taken. We check our bags back in and went on our way to find our next flight. We had to go back through security checks to get to our next gate. A security person noticed me with the pram (my pram was given to me almost the second I got off the plane, NICE!) and ushered me off to a special very short line (that still took ages). I was looking all worried and probably quite horrendous by that stage, the people in the line behind me were lovely and told me I had heaps of time and didn't need to worry. That was nice.
I took my shoes off, which also felt nice, as everyone else had theirs off and eventually Tova and I went through the security scanner. I think it is full body xray in U.S. Anyway, we went through uneventfully and found our way with help from everyone we asked to our Gate. Near our gate there was a charging booth. So Tova and I sat next to that and she watched her pooh Dvd for an hour.

The DVD player only lasted for a few hours on the flight from Sydney. It was the only thing Tova really wanted to watch. The movies that I had purchased on Itunes the other day and set up on the ipads didn't actually load onto the ipads, so they couldn't be watched. It was very stressful! That is something I have to fix up for the flight home.

LA-Huston Texas. Another flight. I was pretty fragile by then. Tova not so much. I don't understand, she was amazing for the flight to LA (except just before she passed out at 930pm on the plane, she cried then, but she was just tired). Then she was amazing in transit, amazing on this next flight. No fussing, no crying. She was a little annoyed she couldn't want her DVD player, but really, she was just so angelic.
The lady sitting next to us asked me where we were going and all that, and when she asked me if I had any other children, I almost burst into tears. I was so fragile. When I asked her for her story, she told me she was going to her best friends funeral.. Fabulous. We were the pity party seats at the back of the plane and we had a laugh about that.. That flight was pretty quick, I think 3 hours. I'm not sure.

When we landed we had to find our next plane. The staff were NOT helpful. I walked off wondering where the f I had to go. I found a board with the flights and gates. I found where we had to be, but had no idea how to get there.
I asked someone that looked like staff walking along near me. WHAT A LOVELY GUY! He re read the boards for me, to ensure I was correct, told me I had to catch a train and noticed my freaked out look. He took my bag ( we had no pram this time so I was carrying Tova) and took me to the train, he got on the train with me and walked me right up to the front of the gate.. I then realised that in America people tip.. omg, I had no money.. I hope he knows how much I appreciated his help.

Texas-Toronto. Teeny tiny plane. I think it was a 40 seater. Tova was again amazing. No fussing about anything other than the fact that I couldn't let her watch the DVD player. We made friends with the guy in the seats on the other side of the isle. He was good to talk to. Tova liked watching me talk to him too. So that was entertaining for a while. At one stage I looked over and the Tova as asleep. So cute. She slept for about an hour. The flight attendants on this plane were lovely. Perhaps because it was such a small plane.

We arrived in Canada. I was pretty emotional by now. Tova not, she was happy and cute. I thought that I could burst into tears at any stage. I am not even sure why. I was very tired and worried that I have made the wrong decision about going to Canada and spending so much money and missing the boys.. My beautiful boys.
Customs here in Canada was a little bit more eventful. I had collected all our bags and walked up to the customs dude. He asked me the normal questions and then asked me what I was doing in Canada for 5 weeks. I said "holiday".

Customs "where are you staying"

Me "near picton, I don't know the address...."

Customs "Who with?"

Me "Kevin someone, omg I can't remember his last name".

customs looking very surprised and physically jumped "What?"

Me "the place is called Ability camp".

Customs "do you have a letter from your husband saying you can bring your child into Canada?"

Me: "what the... a what? No, but I have her birth certificate, my marriage certificate and a letter from the camp"

Customs "you do understand why I am asking you right?"

Oh my goodness, I looked like one of those people on the TV shows about border security. It was pretty funny and not so funny at the same time. In the end the customs guy was really lovely and helpful. He did have a few odd things to say about children with special needs, but only had good intentions.. so all good.

We made our way with all our bags out into the freezing cold air and waited for the shuttle bus to the hotel. It arrived after about 15 mins and took us to the hotel. We slept. I slept very badly because I was sharing the bed with Tova and even though she is small, she seems to take up the entire bed. I will attach a photo of how she was sleeping, which shows how much room I had next to her. So, we went to bed at about 1.30am Toronto time. I woke up to my alarm at about 9am. I ate chocolate to give me a sugar rush. Tova wouldn't wake up. Even with the tv on, music on and curtains open so the room was light, she was just totally out. I had to wake her at 10.50 so we could get downstairs and meet our ride at 11am.

We were picked up at 11am by a friend of the Camp. He drove us via Walmart to the Camp. It took something like 3 hours. Walmart was like Kmart, but had a food section. No free range eggs, no free range meats. BUT $17kg fresh Salmon. I got $22 worth. YUMMMMM.. I don't think much of food from Walmart, so I will try and find a better shop next week when we need more food.

Apparently there is a farm down the road from this camp that sells farm fresh eggs, so we will buy them.

Last night Tova went to bed at 7.30 and went to sleep almost straight away, in my bed. I went to bed at 10ish and would have slept through perhaps if a Tova didn't wake me at mid night. She couldn't sleep, we got up, I fed her a banana and gave her a drink. Then I set up the portacot and put her in it. I listened to her cry for a while then I guess we both fell asleep. UM, we woke at mid day!

When we arrived yesterday, we were the only ones here. Everyone has arrived now. There are going to be something like 5 other families and 3 adults. The adults are in different sessions and only one is staying here, the others will come for their sessions and then go where ever it is they live or are staying. The adult that is staying here is lovely! She is with her mum, they are both lovely. Nice to talk to and friendly.

Tova has made friends with a little boy and his big brother. The big brother is great, he is about 12 years old and really polite. Tova likes them both. The little brother is here for therapy too.

So, I haven't met everyone yet. All the other families have been here before, one even 5 times. I need to win the lotto if we are going to have to keep coming back.

Sessions start for Tova tomorrow at 8.30am. I have to join in with her for the day tomorrow. I am not sure how I will cope with that. 5 more hours of Tova and Ima time. I hate therapy, I really find it boring and I struggle. But then for the rest of the time she is with them for 5 hours a day 5 days a week! woohoo. .

Tonight is going to be interesting. We have only been awake for 7 or so hours. So even though it is bed time, it isn't. Maybe I will put Tova to bed at 8.30 and see what happens.

It is so confusing. At least there is the baby jail to put her in so I don't get crawled all over during the night, and she doesn't fall off the bed.

That is that for now.

Oh, two things I forgot to mention. First when we woke up in Toronto the first morning, it was snowing! Not impressed! The second thing that is quite astounding is that on the way to the camp the guy driving us stopped for coffee. I got a coffee for me and wholemeal carrot muffin for Tova. The cost of those two things together was...... $2.60. Amazingly good! So, if we were actually staying somewhere close to shops, Tova and I would be living off Coffee and muffins.. Lucky we aren't. The coffee isn't very good, Tom or Tim something is the name of the cafe chain.. not that I know anything much about coffee..

Getting to Camp

Ok. We made it.

The flights were all good.

Melb - Sydney was no problem, that is a quick flight.

Sydney - LA was long. Almost 13 hours. Tova was amazing. She ate, watched movies and slept. She didn't sleep much, at about 9.30pm Melbourne time she passed out on 2.5 chairs (we had 3 to ourselves). She slept for 5 hours.

When we first got on the plane the girl that was assigned the seat next to Tova took one look at where she was going to sit and looked horrified.. YAY!! haha. That was my plan. I was hoping that would happens so they would ask to be moved and we would get the three seats to ourselves.. and she did and we did.. It was great. She was all "oh no, but I want to sleep for this entire flight, I have to sleep for this entire flight... ".. haha. I said "oh yes, you don't want to sit here then".. I didn't want to tell her that Tova is non verbal, therefore QUIET.. haha. see ya lady!

We made friends with the 2 men in the seats in front of us. They were on their way to a crazy American road trip, and are quite possibly on the same plane home with us. I hope so, they were lovely. It would be fun to compare notes about our experiences over the 5 weeks. Josh and Cameron! Hi guys! I hope you are recovering well from the jet lag. I think Tova and I should be recovered by tomorrow. I hope.

I also slept little bits on the plane.. I think. My memory is a bit hazy now. We ate stuff, and shared the food we wouldn't eat with Cameron and Josh. It was almost like having Yuval and Nissim with me.. :-)

The flight attendants weren't very nice. Well, sometimes some of them were. It was a bit confusing actually. There were a couple of older flight attendants that looked like they were completely over working and that the flight was long and they were tired at the beginning of the flight. I heard one snap rudely at a passenger right at the start, even before we took off. I was thankful she wasn't on our isle.. But they wouldn't let me put the Growth Hormone anywhere cold. That was very disappointing. I don't know if it is damaged now. The cold packs were completely defrosted by the time we got to Toronto, but it was still coldish in the cold bag. I think the pressure in the plane made some leak. The bag is a bit wet (could be from the ice packs too), but also smells like that hormone. Yuk. AND when I gave Tova her injection last night, I had to do 6 clicks of air.. so perhaps 6 days worth of hormone leaked? I don't know.. well I am still going to give it to her. I just hope that it isn't damaged. It was such a big decision to even give it to her in the first place. I don't think there will be any left to keep cold on the flight home, so I may not have to worry about that.
So, I am pretty unhappy with the flight about that.

We got off at LA. We had to collect all our bags and pass through customs. That was a bunch of lines and waiting. But we had fast track cards because we were connecting flights, so we were in the quick lines.. they were still very slow. Tova did well. Nothing much happened, I was asked a bunch of standard questions, got finger prints scanned and photo taken. We check our bags back in and went on our way to find our next flight. We had to go back through security checks to get to our next gate. A security person noticed me with the pram (my pram was given to me almost the second I got off the plane, NICE!) and ushered me off to a special very short line (that still took ages). I was looking all worried and probably quite horrendous by that stage, the people in the line behind me were lovely and told me I had heaps of time and didn't need to worry. That was nice.
I took my shoes off, which also felt nice, as everyone else had theirs off and eventually Tova and I went through the security scanner. I think it is full body xray in U.S. Anyway, we went through uneventfully and found our way with help from everyone we asked to our Gate. Near our gate there was a charging booth. So Tova and I sat next to that and she watched her pooh Dvd for an hour.

The DVD player only lasted for a few hours on the flight from Sydney. It was the only thing Tova really wanted to watch. The movies that I had purchased on Itunes the other day and set up on the ipads didn't actually load onto the ipads, so they couldn't be watched. It was very stressful! That is something I have to fix up for the flight home.

LA-Huston Texas. Another flight. I was pretty fragile by then. Tova not so much. I don't understand, she was amazing for the flight to LA (except just before she passed out at 930pm on the plane, she cried then, but she was just tired). Then she was amazing in transit, amazing on this next flight. No fussing, no crying. She was a little annoyed she couldn't want her DVD player, but really, she was just so angelic.
The lady sitting next to us asked me where we were going and all that, and when she asked me if I had any other children, I almost burst into tears. I was so fragile. When I asked her for her story, she told me she was going to her best friends funeral.. Fabulous. We were the pity party seats at the back of the plane and we had a laugh about that.. That flight was pretty quick, I think 3 hours. I'm not sure.

When we landed we had to find our next plane. The staff were NOT helpful. I walked off wondering where the f I had to go. I found a board with the flights and gates. I found where we had to be, but had no idea how to get there.
I asked someone that looked like staff walking along near me. WHAT A LOVELY GUY! He re read the boards for me, to ensure I was correct, told me I had to catch a train and noticed my freaked out look. He took my bag ( we had no pram this time so I was carrying Tova) and took me to the train, he got on the train with me and walked me right up to the front of the gate.. I then realised that in America people tip.. omg, I had no money.. I hope he knows how much I appreciated his help.

Texas-Toronto. Teeny tiny plane. I think it was a 40 seater. Tova was again amazing. No fussing about anything other than the fact that I couldn't let her watch the DVD player. We made friends with the guy in the seats on the other side of the isle. He was good to talk to. Tova liked watching me talk to him too. So that was entertaining for a while. At one stage I looked over and the Tova as asleep. So cute. She slept for about an hour. The flight attendants on this plane were lovely. Perhaps because it was such a small plane.

We arrived in Canada. I was pretty emotional by now. Tova not, she was happy and cute. I thought that I could burst into tears at any stage. I am not even sure why. I was very tired and worried that I have made the wrong decision about going to Canada and spending so much money and missing the boys.. My beautiful boys.
Customs here in Canada was a little bit more eventful. I had collected all our bags and walked up to the customs dude. He asked me the normal questions and then asked me what I was doing in Canada for 5 weeks. I said "holiday".

Customs "where are you staying"

Me "near picton, I don't know the address...."

Customs "Who with?"

Me "Kevin someone, omg I can't remember his last name".

customs looking very surprised and physically jumped "What?"

Me "the place is called Ability camp".

Customs "do you have a letter from your husband saying you can bring your child into Canada?"

Me: "what the... a what? No, but I have her birth certificate, my marriage certificate and a letter from the camp"

Customs "you do understand why I am asking you right?"

Oh my goodness, I looked like one of those people on the TV shows about border security. It was pretty funny and not so funny at the same time. In the end the customs guy was really lovely and helpful. He did have a few odd things to say about children with special needs, but only had good intentions.. so all good.

We made our way with all our bags out into the freezing cold air and waited for the shuttle bus to the hotel. It arrived after about 15 mins and took us to the hotel. We slept. I slept very badly because I was sharing the bed with Tova and even though she is small, she seems to take up the entire bed. I will attach a photo of how she was sleeping, which shows how much room I had next to her. So, we went to bed at about 1.30am Toronto time. I woke up to my alarm at about 9am. I ate chocolate to give me a sugar rush. Tova wouldn't wake up. Even with the tv on, music on and curtains open so the room was light, she was just totally out. I had to wake her at 10.50 so we could get downstairs and meet our ride at 11am.

We were picked up at 11am by a friend of the Camp. He drove us via Walmart to the Camp. It took something like 3 hours. Walmart was like Kmart, but had a food section. No free range eggs, no free range meats. BUT $17kg fresh Salmon. I got $22 worth. YUMMMMM.. I don't think much of food from Walmart, so I will try and find a better shop next week when we need more food.

Apparently there is a farm down the road from this camp that sells farm fresh eggs, so we will buy them.

Last night Tova went to bed at 7.30 and went to sleep almost straight away, in my bed. I went to bed at 10ish and would have slept through perhaps if a Tova didn't wake me at mid night. She couldn't sleep, we got up, I fed her a banana and gave her a drink. Then I set up the portacot and put her in it. I listened to her cry for a while then I guess we both fell asleep. UM, we woke at mid day!

When we arrived yesterday, we were the only ones here. Everyone has arrived now. There are going to be something like 5 other families and 3 adults. The adults are in different sessions and only one is staying here, the others will come for their sessions and then go where ever it is they live or are staying. The adult that is staying here is lovely! She is with her mum, they are both lovely. Nice to talk to and friendly.

Tova has made friends with a little boy and his big brother. The big brother is great, he is about 12 years old and really polite. Tova likes them both. The little brother is here for therapy too.

So, I haven't met everyone yet. All the other families have been here before, one even 5 times. I need to win the lotto if we are going to have to keep coming back.

Sessions start for Tova tomorrow at 8.30am. I have to join in with her for the day tomorrow. I am not sure how I will cope with that. 5 more hours of Tova and Ima time. I hate therapy, I really find it boring and I struggle. But then for the rest of the time she is with them for 5 hours a day 5 days a week! woohoo. .

Tonight is going to be interesting. We have only been awake for 7 or so hours. So even though it is bed time, it isn't. Maybe I will put Tova to bed at 8.30 and see what happens.

It is so confusing. At least there is the baby jail to put her in so I don't get crawled all over during the night, and she doesn't fall off the bed.

That is that for now.

Oh, two things I forgot to mention. First when we woke up in Toronto the first morning, it was snowing! Not impressed! The second thing that is quite astounding is that on the way to the camp the guy driving us stopped for coffee. I got a coffee for me and wholemeal carrot muffin for Tova. The cost of those two things together was...... $2.60. Amazingly good! So, if we were actually staying somewhere close to shops, Tova and I would be living off Coffee and muffins.. Lucky we aren't. The coffee isn't very good, Tom or Tim something is the name of the cafe chain.. not that I know anything much about coffee..

Croup no Hospital

The other morning Tova woke up with the stupid croup breathing.

I gave her pred.

Fed her breakfast.

And kept an eye on her.

She didn't get sick enough for me to take her to hospital. Acutally she spent the day improving.

So, perhaps we really are seeing the last of the croup emergencies!

 

Ability Camp Inc.

In 2011 I found this: www.abilitycamp.com.

I have been receiving their emails for the past few years and kept it in the back of my mind as something that Tova could benefit from.

BUT It always seemed so expensive and so far away.

Their last newsletter stated the amazing specials they were offering for their April Sessions. So Yuval and I had a talk about it, and yesterday we purchased a ticket for Tova and I.

We leave on Friday, yes in 8 days.

Ummm, I would have to say that I am not at all organised. But what do I need to sort out? I need to pack clothes. I need to organise carry on luggage. I need to print tickets and that's pretty much it. All I really need is money, tickets and passports.
I must be forgetting something.

Prep

Today is the last day of the school term.

Tova has been going to school now for a few weeks full time and taking the bus all by herself to get there!
Thank goodness that Tova likes the bus, actually Tova LOVES the bus. On the weekend just past, she took me outside to go and wait for the bus. She also spends much of her time signing (in Auslan) "School Bus".
It would have been quite different if Tova didn't like either the bus nor school. I feel lucky.

School holiday programs have been way too hard to find. We have ended up having to get a nanny so that Yuval and I can still work and Tova doesn't just get plonked in front of a TV for 2 weeks.

Nissim is really becoming a great big little brother (he is bigger than her but younger). He loves making Tova laugh and tries very hard to play with her even though she isn't as interested in his games as he is. But they are great together and can spend quite a bit of time together laughing and entertaining each other now. It is great.

The Growth Hormone seems to not be bothering Tova. She is very good about having the injection each night. She cries sometimes and laughs others. I stuck the needle into my leg one time and didn't even feel it.. I'm not sure why it makes her cry. But it does.. often. Yuval and I love Friday nights as it is our night off the injection.

Tova had her eyes tested recently. No eye problems.. yay.

That is about it for now. There have been no hospital visits since the last one posted on here. We can only hope for no more ever!

 

SCHOOL

So creche is finished and now Tova is at school full time. wow.

Tova has swimming at school every Thursday. I went to watch. She did much better in the pool without me in there with her. MUCH better. She swam with her teacher Andrea. Tova loves Andrea the most apparently.

After swimming was home time. Tova went on the bus for the first time.

Andrea took her to the bus and read her a book she made (Andrea made) about taking the school bus to and from school. Andrea sat with Tova until the bus went. I raced home so that I could meet Tova when she got dropped off. Tova is the first off after school and last on in the mornings.

Apparently Tova was happy and smiling on the bus trip - all 15 mins of it.  That's lucky.

This morning the bus arrived out side our house at about 8.20. I put Tova on. She wasn't terribly impressed about it and I did have to sing a nursery rhyme to get her to sit down.

I then followed the bus to school. She was apparently happy on the bus.

By the time I got there someone had already taken Tova down to her class room. So I walked down there. She was in a different room having cuddles with one of the other teachers. She looked at me and could see her own class room and indicated that she would rather be in her class room than with me. So, off she went to her little desk and asked for Maths.. she most certainly doens't get that from me.

Today, she will get the bus home and I won't even be following it.

The next school day is Tuesday as Monday is a public holiday. But it seems that things are finally about to settle down into some sort of routine. Just in time for school holidays to shake it all up again.. :-)

following-bus My Tova is in that bus!! The bus company are getting brand new buses over the next couple of weeks too! This one is so loud and clunky, I thought it was going to wake up my entire street this morning.

Tova in my car. Tova in School Uniform. Tova in my car. Tova in School Uniform.

Monash Hospital for Croup Yet Again

5.45am - I woke to pitter patter of little feet walking to my bed room. Nissim stood next to me and told me he had been having bad dreams. Through the monitor I then heard Tova breathing badly. Great... croup... stridor...

I went to her room, Yuval put Nissim back to his bed and Tova joined Yuval back in our big bed while I went and got Panadol, pred and Ventolin.

Being a bit out of practice with the hospital bags (and not having one packed anymore), I took ages to get everything together. Tova had seemed to calm down a little bit after half an hour. But not enough, so I drove her to Monash. I didn't feel like calling the ambos. So I drove the 4 mins to the hospital.

When we got there she seemed to have improved a little more. Still, she had that stridor. So I went in. There was not one person in the waiting room. We were sent right in.

The doctor on duty in the peads emergency ward said "Hi, I'm Ari".. I said "oh good, someone that will actually pronounce Tova's name correctly without me explaining". He then quickly switched to key words in Hebrew when he spoke to Tova. He was LOVELY!!!! He blew up a blue glove like a balloon (Tova LOVED him for that), then he drew eyes and a mouth etc on it to make it a fish. He and Tova played catch for a bit then she didn't want it anymore so Dr. Ari put it in the sink, turned the tap on and said "Fish swimming now".

It had been an hour since I gave Tova the pred. It had started to work. So NO ADRENALIN. There were some touch and go moments in there and at once stage the adrenalin neb was set up, but Tova started breathing just fine. So we ended up staying there for about 5 hours, no extra drugs, then home.. amazing.

The last croup was in November I think. So we are getting the episodes further and further apart each time. It seems to have gone from every 3 weeks to every 3 months. NOT BAD!

The doctors were all quite impressed that Tova is on Growth Hormone and said that it will help stop the croup too! GREAT. They better be right because Tova cries almost every time we give her the injection. Poor baby. She doesn't try to stop us giving it to her, in fact she get ready in a comfy position, but she knows it is going to hurt and she looks a bit worried and cries and then is fine. Yuval and I both hate giving it to her and always want the other person to do it. Tova likes it when Yuval does it the most.. which is fine by me! Poor Yuvie.tova wondering what to watch first, the ipad or the dvdI asked for a cot because Tova loves to jump and fall off beds when I am too tired to pay attention. She actually really enjoys being in the little 'jail'. I like her being in the cot too, as I can take my eyes of her for moments at a time. One of the last times we were stuck in there she threw herself off the bed (which I had lowered to the lowest setting). I had passed out, and she was on Adrenalin.. I think I had managed to get 1 hour sleep before I had to rush her to hospital, so as the hours ticked past I fell asleep, and was awoken to Giggle, THUMP, CRRRYYY.. So this time I avoided it by the use of a cot.. and anyway, she was quite reasonable this time with her croup.. it was almost 6am.. I can handle that.

 

School, Eating and Hormones for Growing

Tova loves her new creche. Taylor her Aide came along from Chabad Glen Eira to the new creche, which made the transition much easier. Tova and Taylor have both been there since Late January, 3 days a week. It has been great for Tova to have someone like Taylor in her life, knowing how to feed her and communicate with her, they even have their own special secrets and games that they play together.

However, for some reason that I am not quite sure about I decided to enrol Tova in school. I had a look at about 5 schools last year, not expecting to send Tova until 2014. I really don't know what happened but for some reason I kind of just fell into the school and the idea that Tova could possibly go this year. So for two days a week over all of Feb, Tova has been attending Prep. She took a few days to get used to it and I couldn't leave, but for the past 3 or 4 visits she has loved it and I have even left her there for 2 full days.

She is starting to do what the teacher says, like "stay in your seat"... I have spent quite an amount of time sitting in the back of her class room, watching. It is great to see that Tova will learn so much. The teachers and the schoool SEEM fantastic. I hope they really are fantastic.

We will however be sad to say goodbye to Taylor whom has now been offered a full time job at the creche.

The school are happy to take time out to feed Tova and will even try and teach her how to self feed!

Another crazy thing we have started is Growth Hormone. This drug is a bit scary. We have been thinking about it for about a year, and were even still trying to decide if we should go ahead right up to the last moment before we gave Tova her first injection. Yuval and I feel like it is something that we must try. This magic drug has the potential to help with Tova's muscle tone. Our friend has been using it on her son for over a year and she says she can't believe the difference it made in her son's muscle tone.

It is a scary drug because it has some horrible side effects. So far Tova has suffered from a few of them, we first noticed them at about the day 3 mark. Tova is more tired, seems to be uncomfortable and is rubbing her ear more than normal. I think she is a bit consipated too. Today at school they said she wasn't herself all day. She had frequent bursts of sadness. This is so unusual for Tova. She was the same when she got home and for the rest of the afternoon and evening. i gave her tpanadol after dinner (which she didn't eat).

At about midnight she woke up hungry, Yuval gave her a midnight snack. I watched her eat. She is so cute. I am still amazed that she eats with her mouth.

So this growth hormone is an injection into the fat part of her thigh 6 nights a week. Tova hates it, is scared and cries just from seeing it. Poor baby. She also makes yuval do it so she can hold onto me tight. Poor Yuval.

I think we will call the nurse tomorrow and ask if the side effects stop soon or not. It is bad enough that it hurts her giving it to her.. Stupid side effects.

I just hope we see some dramatic changes in her to make it all worth while.

ALSO, Tova has been seeing a very lovely Chiropractor for the past few months. He has managed to get the fluid from Tova's ears to bugger off. For the first time in Tova's life she doesn't have fluid on her ears.

Toilet training is going just fine. Slowly but surely. Almost every poo is in the toilet.. wee is a bit harder for some reason. Tova loves wearing pull ups.

Nissim is being a good boy and once Tova is settled into school Nissim and I will have Ima and Nissim Tuesday every week! I think we will start up swimming lessons again. And perhaps something else like kick boxing or what ever 4 yr olds do once a week for 'sport'. 

Ok, so once I get a school uniform I will post a pic of Tova 'first day of school' kinda thing.

Now just to get over to Lively Eaters to get Tova eating independently. Or anywhere that has an eating school! That would be great. 

Doing Poo

Ok, so yes, I gave up toilet training after about 8 days of my house being a big wee wee nappy!!

However there is some success! Tova now does poo in the toilet as long as we get to her when we see the warning signs. So far all but one have been done on the loo!! Congratulations Tova!

She loves sitting on the toilet.

Our next challenge will be wee! Yuval and I went back to the continence nurse to talk about strategies. We have our plan and have put into to place at home and child care.

The nurse, whom is very impressed with Tova and has much faith in her, said that she thinks Tova will be fully toilet trained within this year!

Incredible! I am so proud of Tova.

Eating is pretty much the same, but we are going to shake it up this year.. I hope we get to Lively Eaters soon!

No hospital for quite a while.. I think it has been about 2 months! We are loving it.

There was an ambulance parked out the front of our house the other day, it gave me a fright because I immediately thought of Tova. But it must have been for a neighbour.

Nissim is great.. cute! He lost his voice the other day, he isn't sick at all, just not much voice. When I asked him where he thinks he may have lost it he told me that it was somewhere in his head right now.

Toilet Training Attempt One Day Two

Ok, on Monday I drove a very long distance to Ringwood to talk with a continence nurse about Toilet Training Tova! I was nervous and anxious about the meeting as quite often in the past at appointments I have been asked all sorts of questions that for one reason or another really bug me.. I was also running late and Tova was annoyed about the long drive.. So by the time I got there I was rather stressed.

HOWEVER, the lady that greeted me and then sat down with me for probably 2 hours was unbelievably lovely. I am completely overwhelmed by her compassion, friendliness, knowledge and general loveliness. She was great. She made me so relaxed. Even Tova became relaxed after a while and explored the offices.

She gave us tips on how to Toilet train Tova. It has been a bit of a wee wee journey so far.. just like Nissim was..

One wee in the toilet and the rest on towles on the sofa and in my bed. :-) oh the joys!

So.. Let us see how much I can handle and if I can deal with it, how long it takes to get Tova in undies. She does love wearing undies. She also LOVES sitting on the toilet.

It is very cute to feel her little bum with no nappy when I pick her up to carry her.. hehe.. She is pretty proud of her self so far, even though there really isn't much to be proud of from my point of view, at least from the point of washing view!


Day 3 here we come!

Tassi and Back

Tova, Nissim and I went to Tassi. Yuval stayed at home worked and rested (lucky man).

There were loads of bush fires while we were there. The smoke was terrible, but for some reason, Tova didn't get Croup or any other breathing issue, which means this year on our visit to Tassi, we avoided being admitted to the Royal Hobart! Nice work little Tova!

My mother came down for the last couple of days (we all stayed at dads), and she said the smoke was bothering her, so we were all quite happily surprised that Tova had no issues.

Rick, my brother and his wife and kids also came down. The cousins all had a ball!

I met up with some Tassi clients and hung out with family. Quite a few friends were trapped along the coast due to so many roads being blocked becuase of the fires.

The kids and I went to the taste. It was amazing! Every year it just gets better and better. I hope that next year (if we go) there are more rides and fun things for the kids to do.. however, even if there isn't, it is great just how it is.

We had a ball!

Home now and Nissim is back at creche. Tova is waiting to go to the same creche, but we just found out that all the paper work we had filled out over the past few months was wrong - the wrong forms, so we have to start again (thaks so much for that to the person who is to blame.. nice work! I hope to never meet you for your sake). I am kinda going out of my mind with no respite. But this is the life of a Mother I guess. Hopefully it will all be sorted out in a matter of weeks not months. *sigh*. I think Tova is also pretty bored.

At least Yuval got a break while we were away!

 

 

Growing and Hormones

We got a phone call on Monday Morning telling us that Tova had a bed that night in the hospital for an elective treatment (a bunch of blood tests for the endocrinologist).

I spent the rest of the day rushing about like a crazy person organising everything and everyone.

Tova and I made it to the hospital by 4pm (the time we were asked to be there). I wasn't exactly sure which ward we were supposed to be on, so I walked into the one we know best. I didn't have to say anything, a nurse said, 'oh hi Tova and mum, we are expecting you'.
We knew every nurse on duty and all of them agreed that we didn't need to spend the night there, so they put a hold on her bed and sent us home with instructions to be back at 7am. Which is exactly what we did. I am so happy that we didn't have to spend the night there.

We went home, had dinner and went to bed. Got up early and drove the 4 mins to the hospital.

Tova didn't eat from midnight last night until about 2pm today. This was part of the blood test. Everyone, including me was expecting the skinny, tiny little Tova to crash and need magic water through the drip at least once during the day. But nope, her sugars and all other blood tests stayed 'normal' all day. 

The blood test involved taking blood from her every 15 mins for the first hour or two then every half hour after that, all day! Well almost all day, from about 8am till 2pm. She drank water, and nothing else.

They took the blood from a drip thingy that they placed in her arm first thing in the morning (and got in first go, which is unheard of, as Tova has no veins). The doctor who did it even won a block of chocolate for getting it first go as everyone on the ward knows that Tova has no veins.

They were clever about putting the drip in, they gave Tova nitrous which was very helpful. She was so drugged out, it was funny. It wore off pretty quick.

She spend the day watching hi 5, wiggles and night garden.

At 2, once she was able to eat, she ate heaps.

We are home now, the entire thing was much easier than I had imagined. Tova is tougher than we all imagined, the doctor commented that it is a sign that we feed her the right foods and she must eat well, because all her levels were so good all day even with all the blood being taken and no food.

The female doctor and her two students who were looking after Tova (and me) today were above and beyond excellent. They were fun, compassionate, interesting, friendly, informative, and down to earth. They made the entire day much easier.

The results, well, we find out in a few months, but it looks like she produces all the growth hormones herself perfectly and doesn't need growth hormone treatment. She is just small!

We hadn't made a decision to give her the hormone treatment, we were/are just exploring our options.

What a day!

A Normal Cough

Tova slept through the night.

She woke early again (6.30ish) coughing and a little upset.

The cough sounds like a normal cough, not a croup cough. She ate breakfast and had a drink, so she can't be too bad.

She is quite grumpy today, so I guess she isn't feeling too good.

No hospital again! How simply incredible.

Dare I say it? CCCCRRRROOOOUUUPPP boring!

Really? It is kind of like a joke now, isn't it?

Instead of first talking about the boring croup. I want to write about yesterday.

I took Tova to the therapy center where she has Bowen therapy with the most lovely John!

The center also has a bunch of other therapists, I took Tova to the Osteo to fix Tova's ears.

Tova wasn't very impressed, it was similar to the hearing test the other day, where Tova completely lost the plot, with what seemed like fear. Not sure what that is all about, it isn't like Tova to be all freaked out.

Well, this time I was mostly prepared. I had the Ipad, but I took the wrong one. I took the one that has NO WIGGLES! That was stupid of me. But it still has loads of kids games, so Tova was ok during the appointment. Not great, but ok.

So, now we wait and see if the osteo made a difference. We will go back to her again next week for more. I really hope she can get the fluid out of Tova's ears!

I will also search for additional methods to help with fluid and see what I come up with. But NO MORE GROMMETS!

Well, ok, so the croup!

Tova woke up at about 6.30am with that stupid croup cough. I got up and picked Tova up out of her bed and took her into mine. She was all cozy in between Yuval and I. About 15 mins of being semi peaceful she started that cough again, so we gave her Pred.

It did the trick. No hospital yet.

She seems fine, her cough gradually changed from the croup bark to a normal cough during the day. We even made it to Science Works for the afternoon. Wow, that place is so boring. But the kids had fun, and that is why we were there, so it was well worth the trip.

Tova ate well today. She had a huge breakfast, huge lunch, huge dinner and snack in between. I knew something was up yesterday when she only ate half her breakfast and half her lunch and wasn't very interested in dinner. I knew she was getting sick. That is the only time she doens't eat us out of house and home.

She is now in her bed sleeping. I can hear her in the monitor, she seems to be stirring a little. I hope that tonight is as boring as can be! Of course I have butterflies in my stomach and am feeling all anxious. But, hopefully no hospital!

Nissim didn't eat much dinner tonight. Not sure if that is because of all the cheesymite snacks he had today, or if he is also not feeling the best.

Nissim is so funny these days, saying really funny things for example, on the way home from science works, he was a bit grumpy so we were telling him how much we like a happy Nissim. He said "My happiness is gone!" and when I asked him where it went he replied "it is in my bum!". haha. He is a funny one.

Lively Eaters

Well, I asked and I found!

I have discovered Lively Eaters. A feeding clinic in South Australia.

They offer exactly what I have been desperate to find for the past few years. An intensive feeding program!

As I have said before, I know that I am half the problem with Tova not progressing further with her eating. I know I need to change my attitude and routine. This feeding program will hopefully be the thing that changes us all and helps Tova to move on and start self feeding.

I can only imagine what life will be like with two children taking care of them self at the dinner table. How crazy to imagine sitting down to a meal where I don't have to feed me and Tova. Just feeding me sounds pretty good to me!

Omg, and not having to give her a drink every couple of hours and watching her taking sips from a cup by herself sounds pretty good too!

Not that I am complaining. I LOVE that Tova eats and I don't care how she eats as long as it isn't tube feeding. I am for ever grateful for the 100% success we had in Graz. Our goal was to get the tube out and we did that!

Next goal is self feeding.

So, I am waiting for lively eaters to get back to me. I read about them in a post on the Tube Fed Kids  forum.

It looks like a trip to South Australia is on the cards and hopefully very soon.

Not only will it help in most aspects of our lives (having Tova self feed) but it will also help Tova and the fluid in her ears.

Tova had a hearing test yesterday. For some reason she completely freaked out. She normally doens't care about having a hearing test. I don't know what was going on but she was completely hysterical and wouldn't let go of me, I didn't know she was that strong. It was just horrible. I wanted to run out of there and never go back. But I know it is important to see how her ears are now that the grommets have grown out AGAIN. Actually one nice thing about it was all the full on hugs Tova was giving me. Wow, she was holding on like her life depended on it. My poor baby. I felt so mean. It took me until this morning to get over it actually. I was quite stressed when I got home.

And to make things worse the arse in the hospital cafe (Zouki) was completely rude to me when I went to buy a coffee. If he is having a bad day he should take it out on someone else behind the scenes. Working in a cafe in a hospital means most people that he serves are completely stressed, scared and or depressed, they don't need a jerk to treat them bad just because they ask for soy milk in their coffee. JERK!

I remember what Tova was in NICU and I ate some food from that Zouki cafe. I got food poisoning, gave it to Tova and I wasn't allowed to go to see Tova for about a week! She was put in quarantine and got VERY SICK. Yuval and or I (can't remember who) told Zouki, who offered us a free meal to say sorry. OMG, as if I could ever eat there again. It took me a few  years just to be able to buy coffee from there. I should say that quite often there is a very happy and VERY friendly guy working there, but not yesterday. wow, fart head Zouki guy!

So yes, she has fluid on her ears again and because of that has some hearing loss. She can hear perfectly with working grommets, so we know that she doens't have a permanent hearing loss. 

Now it is just a question of what to do now. Yuval and I have decided not to do grommets again as they can damage her ears that are already very fragile. We will go on a hunt for 'alternative' therapy now. And go to the Australian Hearing thingy and talk about temporary solutions until the fluid clears, which it hopefully will in a matter of time!

Oh so frustrating. Poor Tova. Stupid Premature, stupid body for being such an epic failure when pregnant!

 

Still no Hospital

Tova has been a little bit sick since when ever it was that I last posted. However, she hasn't needed to go to hospital. It is wonderful!
I love a 'normal sick Tova'.
Of course it is nerve racking every night, wondering if we will be woken by noisy breathing. But so far so good.
Tova has just had a cold. A very slight runny nose and a cough.
Nissim too, on and off. Me too actually.
Yuval, well perhaps it is still coming for him..

One of Tova's friends from NICU days is back in the children's on CPAP because of such bad asthma. Get well soon Montana, we love you!

Nissim has started creche for a third day a week. It is really nice for me, and for him. He really needs that now. Next year I hope that he will go 4 days a week. Tova too, she really needs more creche. I am far too boring for them to spend too many days with.
I am just not sure how I would fit all Tova's therapy in and 4 full days of creche. She currently does 2 full days and 1 to 2 half days. She would be more than happy to spend 7 days at creche, especially with such AMAZING teachers. Her creche go above and beyond my expectations. They truly are fantastic+.
When kids have birthdays at creche the chef makes a birthday cake, they always puree some cake for Tova too, so she can join in the fun.. So cute!

Not much else to report. I am just happy that Tova has avoided being admitted to hospital for 2 months, and been sick during that time!

We really need to find a therapist that has experience with feeding issues, as we would love to move on with Tova. I would love her to start eating food that isn't pureed and love her to start self feeding. I look forward to the day I can  hand her a Vegemite sandwich and she takes it and eats it.. wow, I can't even imagine how liberating that will be for her and me. The hunt for therapists begins.

Croup but not....

A couple of days ago I woke up with a sore throat. I went and got some Betadine gargle and tried not to breath on Tova. Usually when I get any kind of sick, it means Tova catches it and ends up with croup and hospital by ambulance. 

I took Tova to the Bowen Therapists (John whom we LOVE!! ). I mentioned that I wasn't 100% and he had to try anything to prevent Tova from getting sick. He did his magic. We then trotted off down the road to our Traditional Chinese Medicine Man (Udi Tal we love him too). He did his magic!

That was on Thursday. Today is Saturday. 

This morning Tova woke up with that croup cough. Her breathing was ok and she seemed to not have a fever. However, Yuval and I don't risk it now. We gave her Pred and Panadol, she had breakfast and a drink. It all seems to be working. The croup cough now sounds like a normal cough, which is music to my ears. Every time I hear her cough I feel happy. Happy that she sounds like a normal sick child, not a rushed off in an ambulance sick child. 

Nissim has a runny nose, but seems fine. 

Both kids have spent much of today on the couch with tv and ipads. I have been to the gym and lululemon - I want EVERYTHING in that shop!

So, we are hoping that tonight is as boring as bat poo... Croup has a way of sneaking up on Tova when we least expect it and so suddenly.. But perhaps not this time!!!

It has been pretty much 2 months since Tova's last hospital stay because of croup. I hope to eventually write it has been 2 years.. 

Eating is the same.. Of course she isn't eating as much today as she isn't feeling so great, but she is eating. 

Oh and the other night, it could have even been last night (they all blend together), Tova's grommet in her left ear fell out. It was in her ear, I found it when I was about to put the ear plugs in for her bath. It was a strange thing to see. But Fantstic, I just want the other one to come out now, then Tova can have swimming lessons. We will also visit some natural and 'alternative' therapies about fluid in her ears. NEVER grommet again! NEVER!

 

Keeping Warm

We have put a heater in Tova's bed-room over night. Hopefully the warmth along with naturopathic drugs and some crossing of fingers will help keep the croup away. So far so good.

Eating is the same. We really need to find someone to help us move forward with Tova's eating. I haven't had much luck finding a speechy who knows much about eating and people like Tova.

Yuval and I put Tova on the scales this evening after dinner and before the bath. Strangly she was 11.2kg, but when we visited the hospital earlier in the month she was 11.9kg on their scales. I think I like theirs! haha. Different scales, different weight. Not to worry, she sure feels heavy.

Both Nissim and Tova are completely happy in their respective child care centers.

Nissim has been going to Swimming lessons for the past few months once a week and loving it. Hopefully next semester (in a few weeks) Tova can start too. I just don't know about those stupid Grommets. I think they have already grown out, but am not completely sure.

Tova has been really interested in using the toilet/potty, so toilet training Tova here we come! That should be a heap of fun.

I have been messing around with this website, so a bunch of pages are not quite in order. It should be all fixed up soon enough.

That's it really. It has been nice with no hospital stay for almost TWO months. LOVELY! I get a sick feeling when I think about having to go back there. It is so horrible for Tova. It is scary and uncomfortable stuff going to that place with a sick child. 

Croup but different

So, on Monday Tova woke with croup.

Nissim was also a bit sick with a cold type thing. But not really bothered.

Tova was also not fussed, she was however as white as white could be and looked very much like a little vampire baby!

I gave her Pred and waited. I know that is what they would have done if I rushed her to hospital, because she didn't seem so bad that she would need adrenaline right away. So, we waited.

After two hours, she wasn't worse.

She spent the day watching Dvd's and eating.

No loss of appetite.

We nervously went to bed on Monday night, Nissim woke us about 300 times and Tova joined in a for a about 100 of those. Yuval and I were a touch tired on Tuesday.

I gave her Pred again on Tuesday morning.

I was in shock that we hand't called an Ambulance yet.. How strange.

We canceled all her therapy appointments, went for a walk around Caulfield park, ate sushi and Raffeteys in Chadstone and basically did nothing all day.

All Tuesday Tova was as white as a ghost, but ate us out of house and home.

Nissim was a little poohead and woke us another what seemed like billion times on Tuesday night. Tova woke a few times again. I think she slept in our bed for a while. But again, no hospital.

Wednesday, the croup cough was gone and replaced with a 'normal' cough, but it woudn't stop. I got scared and confused. So on Wednesday afternoon after a rosy faced Tova refused to eat her lunch, I took her to the ER. After waiting for an hour and  a half to see a doctor (I have never waited that long before, and I dind't mind at all, it is nice to be bored in there, better than the alternative). The doctor listened to Tova's lungs for a good 10 or so minutes. He said she had good air entry and that we could go home. Tova didn't have a massive temp and she was happy enough. And she had been drinking lots (not eating though).

Actually it was pretty strange to hear these words fall from my mouth with such confidence after the doctor asked me if Tova had  lost her appetite ..  "Oh, I don't care if she eats or not, she is sick, sick people don't eat".. What? haha, it was funny to hear myself say i don't care if she eats or not.. And truly mean it. What a milestone.

Another mile stone was being told we could go home after 3 hours of hosptial.

Tova had a good sleep last night, so did Nissim. I had a talk with Nissim about sleeping in his own bed all night and not calling out to adults.  It seemed to work. We all had a full night of sleep.

Tova woke pink and happy. Nissim seems to be completely well.

Tova went to playgroup and Nissim to swimming lessons then off with my mum for the day (and he sleeps there tonight).

Play group told me Tova had a good day. I took her to John her Bowen therapist. She was very happy to see him, and as always he lit up when Tova crawled through the door! They really love each other.

I think some of the potions that John has given me to give to Tova for her immune system and respiratory issues, must be working!

So, croup, sick and no hospital = happy me!

This could be it, the end of hospital days! Imagine that! Wonderful.

Tova is still a little off her food today but breathing well and not coughing at all.

 

So far, so good

Well, Tova has been fine during the days and coughing a little in the colder hours of the morning eg: from 5am onwards.

Once she is up, she stops coughing pretty much.

We have had a heater and humidifier in her room during the night, perhaps that is helping somewhat.

So, no hospital for now.. maybe this really is the beginning of a new non hospital going Tova!

Nissim has been asking how to sign lots of words as Tova mostly communicates with Auslan (she can hear, but for one reason or another does not talk, well she does say aba, ipad and umbrella). He has been asking how to sign 'Nissim', rather than teach him how to finger spell (which Tova knows how to do) Yuval and I looked up the sign for the meaning of his name in English = Miracles. That is now going to be his sign name. We will show him tonight when he gets home from creche.

Not sure what is going on

Early this morning at about 2.30am I was woken by a croup coughing Tova. However, she was sleeping and didn't seemed stressed.

I let her sleep.

She woke Yuval and I a few more times during the early hours of the morning, but she remained calm and sleeping. Yuval went to work at about 4.30am and was on standby for a call from me telling him to rush home because I was taking Tova to hosptial.

Strangly, I didn't have to make that call.

I let Tova and Nissim sleep until they woke up. Tova first at 8ish and Nissim a while after that.

Tova ate her massive breakfast as she always does and was happy and bright as though nothing was wrong.

Nissim refused to eat toast in the car and insisted on eating a proper breakfast at the table. So we were late to creche. Fair enough.

I was umming and aahhing about taking Tova to creche, but decided that since she was acting completely normal and happy even, it would be mean to keep her home with me. So I took her to creche. I gave them the run down and told them that if they were unsure about anything at all to call me and I would come get her.

I sat by my phone all day waiting and expecting to get a call. I really thought Today would be spent in hospital. But they didn't call.

Tova had a great day at crech as did Nissim at his.

So now we just have to make it through tonight. I wonder what will happen. I have set up the humidfyer and a heater in Tova's room to help avoid croup.

I guess I will go to bed early in case we end up in the stupid hospital all night. Gawd, I shudder just thinking about it. not again... please....

Poor Tova.