The Tovington Post

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!

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.

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.

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!

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.