The Tovington Post

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.

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..

Tova on the swing at ability camp canada

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.