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.

Nothing to report

We have had a couple of scares with Tova having noisy breathing over the past few days. But it has passed quickly and we haven't needed to go to hospital.

Eating is pretty much the same. Eating heaps, being fed, practicing self feeding.

Drinking is still hard for her. We are trying to get her to close her mouth when she drinks, but it isn't really working. Drinks are a 3 bib event, and usually a change of clothes.

Nissim is being cute as ever. He is a gentle and caring boy who says lots of funny things. Every night after the kids are in bed I think about the things that they said to me during the day. It always makes me laugh. They are so fun and so funny.

We weighed Tova last night. She was 11.1kg.

I hope we don't have to go back to hospital, not sure if I can cope with it again. It is so yuk and so scary every time!

Croup, need I say more

Nissim had a cold a week ago, I got it a few days later, then Tova and now Yuval.

Tova ended up with Croup, in the ambulance, hospital stay overnight and home again the next day.

Need I say more?

Tova's eating is very much the same.

Nissim however has gone on hunger strike, for example, Tova ate 1.5 sausages today and Nissim struggled to eat half of one! This has been going on for over a week. I hope it is just a sickness related issue.

One More Kilo

We weighed Tova a couple of days ago...

11kg

Tova had a check up with the Grommet surgeons the other day, one of the grommets is already growing out. Weak ear drums apparently. So, the decision has been made (I made it) that we don't do grommets again. There is a magic tincture that is being sent to me from Tasmania, natural medicine! It fixed my sisters ears when she was little, it ensured that she avoided grommets..

:-)

Hearing Test

Yesterday Tova had a hearing test to see if the Grommets have made a difference.

Firstly they tested if the Grommets were working properly and discovered that one of them is blocked, the other one is working perfectly. So I have to talk about the blocked one with the surgery team at our check up in a couple of weeks. Hopefully it isn't causing Tova any discomfort.

Secondly they did the hearing test. Nissim came into the room and was a PERFECT boy, he sat there quiet as a mouse for the entire time. I am so proud of him. The Audiology lady didn't want him to come in and told me she would find someone to sit with him outside the room, I told her that made me very uncomfortable (leaving my little boy with a stranger), so she reluctantly let him come in..

So, the end result of Tova's hearing test is that she has very good hearing! Thank god a billion times over! There are no words to express how wonderful that is. One less thing to worry about, one less challenge for Tova. It is absolutely wonderful!

You Guessed it... Croup Again

I got Internet For the hospital finally just the other day. I thought it would mean that we wouldn't have to be admitted again, I was wrong.

This morning tova woke with very noisy breathing. I gave the happy girl ventolin a massive breakfast and kept an eye on her for a couple of hours. When the breathing turned into croup coughing, I rang uv to ask him to come home from work and then rang the ambulance. They both arrived pretty much at the same time. Nissan was such a good boy. I told him that the ambulance was on it's way and he asked me where he should be whethe paramedics came into the house.

Tova was happily playing with the iPad on the couch breathing so loud that the windows could have shattered.

The paramedics took tova and I into the ambulance and gave her adrenalin. One of the paramedics has a child that had spent time in nicu and about two years of croup after. So it was nice that he had that connection. Ambo people are always so nice.

Tova responded well to the adrenalin and didnt need a second lot.

She is asking to go home and isnt looking like she is going to go to sleep anytime soon. At least I'm not sleep derived for the first time ever on a hospital admission. It was nice of tova to get sick at a reasonable time of day for a change.

Im very sick of it. When I rang the ambulance I had to fight back tears. I wasn't going to cry for being scared, more because it is enough now (and a little scary). I thought the 000 person would think things were worse than they were if I was crying like a frightened parent, so I held the crying in. If crying would make the. Romp stop, I would cry!

Nssim is completely wee wee toilet trained and almost poopoo trained. Tonight I got a phone call from the boys telling me that Nissan was in bed in his night time nappy, he got up and told abba that he needed to do kaka in the toilet, so abba put Nissan on the toilet and success! Such a clever boy! I never thought I would see the day.

Home tomorrow if we remain this boring overnight.

The room mates are good. Very respectfully parents for once. It doesn't bother me whe the kids are I crying etc, but I do get shitty when the parents can't shut up or when they leave lights on, oh and tas up really loud. Tonight all parents are quiet. Perhaps they are frequent flyers like us or have been here for ages.

Syringes

We have not used a syringe to give Tova a drink for over a week, it could even be a couple of weeks!

She drinks from a cup now. Not by her self yet, but she is trying!

It is quite a fabulous change, it is much less stressful in public giving Tova a drink from a cup rather than a massive syringe. It feels good!

I haven't been able to throw the syringes out, perhaps later today? It is going to be fantastic to get rid of them and look forward to all the good things yet to come!

Clever Tova!

Nissim is doing so well with toilet training. It has been hard, but quick. He is very good at pipi in the toilet (or on the trees). He will initiate it him self, we don't have to keep asking him (I do ask him every so often just in case). Even when he was having quiet time watching TV, he came running down to my bathroom and went to the toilet, he is such a smart little man. Now we just have to work on him doing caca in the toilet. He is at creche today, I know he will need to do a poo today! I wonder what will happen! haha.. I told him that he can tell the teachers to let him call me and Aba if he does a caca in the toilet!

Two years ago

It was an incredibly quick two years ago today that I took Tova's PEG tube out!

Tova still eats puree and soft lumpy foods and I have to feed her. She is mostly drinking from a cup (not a syringe) and is very interested in self feeding.

She has started to want to put food such as banana and rice crackers on her mouth, but she doesn't chew. She puts it in her mouth, and lets it fall out! That is still a very good step in the right direction for her!

Also, Today was Nissims first day of going to the toilet all by him self, with out being asked. We are very proud! He now only wears undies in the day and refuses to wear a day time nappy! Clever boy!

Grommets again!!!

Goodness me!

A few days ago Tova had the grommets done. No cancellation this time as it had been about 3 weeks since Tova's last admission to hospital for being sick. I think if it had been any less they wouldn't have done it.

This was our first experience in Casey hospital and our first time going public for Grommets! Wow, what a difference.

Public seem to have so much more time and compassion. They were amazing, all of them. I loath the part where I hold Tova while they put her to sleep, every time I have done it I have said to myself "never again, Yuval is doing it next time, I can't handle it", yet for some reason I do it again (actually Yuval did it always for the first few years). Well gosh, I had an anesthetist nurse holding me while I was holding Tova, there were about 4 or 5 medical people standing around me sitting on a chair and they were all supporting me with kind words and helpful information such as "she will jolt a little as she is falling asleep, but that is normal, don't worry, Tova is fine, she is happily asleep" and things like that.

Then they called me right away even before Tova was awake in the recovery area and didn't mind when I put Tova back on her bed the wrong way around, they just followed my lead because they knew that I know what is best for Tova! It was really something else! Tova recovered better than she has from any other anesthetic in the past. She was hardly sad and signed for a drink pretty soon after getting back up to the ward.

We were home just after lunch time! Tova was a bit sleepy and did have a long afternoon sleep and again went to be at bed time till the morning. She is completely recovered now.

She started creche today. I didn't think it would bother me, but I feel a bit anxious today. I know it will pass quickly and I will just drop her off and run soon!

Nissim is toilet trained almost completely now. It took about 4 days! Unbelievable. He is so clever. He kept refusing for almost this entire year. But I stayed home for 4 days and did nothing but toilet train! He loves undies now! Still night nappies because he loves his bottle at bed time! No worries!

Mullumbimby and Back

We made it to Mullum and back with NO ADMISSIONS to any hospital

Before we left I gave the Mullumbimby hospital a call (I think it has 15 beds). I wanted to check if they had everything that Tova might need if she got Croup while we were up there. Aunty Liora lives directly across the road from it, so I wasn't worried about how long it would take to get the the hospital, just if they could care for some small like Tova. They said they had everything we may need. We didn't need them! Excellent!

It was a good trip, too short, but really nice to see everyone. Nissim and Lev got on so well. They are great cousins. Nissim is also absolutely obsessed with the eldest of the cousins Edden. Edden didn't mind all the attention because he is a magnificent young man!

We were in Mullum for Edden's Bar Mitvah! The ceremony was in the Gold Coast Shull and then on Sunday he had a big party in Mullum. Both events were fantastic! He is the first of the cousins to have his barmy, the first of many. He did so well it was hard to hold back proud and emotional tears in shull. It also scared me a little that we are going to watch Nissim do the same thing in about 10 years!

The plane was even easier this time because Yuval was with us. The kids sat with him while I mostly played scrabble on the ipad. Yuval also got a fair amount of bejewled in too! Our babies are great flyers!

In Mullum we discovered that we don't need a high chair to feed Tova in, she ate every meal in a regular chair like a big girl. It was great. At home the high chair is easy, but now that we know we can sit her in a 'normal' chair, we will be able to feed her when we are out and about and have no pram nor high chair!

Tova ate well while we were away, she didn't eat anything particularly great, mostly supermarket purchased food because it was so convenient. However, for some reason she gained weight, and is now 10.9kg!

We are back home now and routine is starting to comfort us all.



Noisy Breathing

We are visiting Tassi.

The flight over was pretty easy, the kids were annoyed when the flight attendant told us to turn the ipad off for landing, but we sang and managed.

The Taste of Tassi is incredible. Everyone is happy and friendly, the weather is warm to hot and the food is delicious. The taste is on the docs surrounded by all the Sydney to Hobart Yachts, the buzz in the air is magical. At this time of year, Tassi is like a tropical paradise.

I have dragged the kids around through Salamanca, friends houses and everywhere in between. We had plans to visit my friend Fiona down in the Huon Valley on Monday but Monday morning at about 1.30, Tova woke me up with her noisy breathing.

Sarah (my sister) came over at about 2.30am (her daughter was staying at her grandmothers for the night, making Sarah 'available') and Dad and I drove down the the Royal Hobart Hospital. I told the Triage lady the usual panic "x24 weeker, chronic lung, labored breathing, multiple admissions for respiratory issues including into ICU and she crashes quickly". The lady told me to take a seat. I couldn't believe what I was hearing. But Tova wasn't at her worst so we sat. I had a look around the waiting area and noticed a man in a chair with a blanket and a drip in his arm. I was astonished, as to me it seem really unreasonable to leave  a person in the waiting area with a drip in. After about half an hour, it could have been an hour, the man with the drip and his friend ripped the drip out, threw the drip pole with the attached drip up to the triage window while shouting "the treatment here is disgraceful?" and walked out, I totally agree with him!

Tova crashed quickly and finally they noticed! 5 people surrounded us and sped us off to the resus area where they gave Tova adrenalin and monitored her. Idiots, I told them she crashed quickly, they didn't even listen to her with a stethoscope when we arrived. I can't believe the way Tova was treated. We went down to the ER kids bit, which had plenty of empty beds, so I am still confused why they made us wait. They shouldn't have!

Anyway, I didn't be rude, I did however mention that it was wrong that we were made to wait until the moment after Tova crashed. Everyone in the Hobart Hospital was friendly to me and Tova. It is much nicer than Monash. Monash is so tired and grotty.

When we got to the ward we were given a single room because their policy is that if a patient has been in another hospital with in a month they must be put in isolation. Nice! The room was big and bright with a view of Hobart including a bit of the water front.. Parents get treated much better there too. They even provide breakfast for the parent that stayed the night, oh and meals for one parent.

Tova was quite well by now but we had to stay over night because of Tova's history. The nurses really didn't have much to do with Tova yet they kept coming in every hour or so to ask if there was anything we needed, (food, toys, books, drinks etc) Monash don't do that. Hobart has a much better quality of service. Everyone was friendly.

I was pretty tired after only 2 hours sleep and fell asleep on Monday night at about 9.30pm. It wasn't the worst sleep in the world, but not the best either. I woke a few times in the night and Tova stirred a few times. We both woke at about 7.30am..

Rick (my brother) and his family arrived on Monday night and are staying at Dad's too. So when Tova and I got back to Dads on Tuesday morning everyone was there waiting. Everyone except Nissim, who had stayed at my sisters on Monday night. He was a good boy and didn't mind waking up to Sarah in my bed and spending the day with Dad and Sarah. He had dinner with Lilly and Sarah and Sarah's mums and then slept in Sarah;s bed with Lilly and Sarah. He came back to Dads before lunch time and was so excited to see all the people at Dads house. The kids all had such a wonderful day playing in the sun/shade.

I have lots of photos and will put some up when I get back to Melbourne or find some time before.

You can bugger off now croup! We are so very sick of you

Um, croup AGAIN

Last week I dropped Nissim off at creche, hung around for a while with Tova and talked to some of the creche workers. I was talking to someone in the room whom had a husky voice, I thought to myself, "here we go, let's see who gets sick from this".

Nissim got a husky voice the next day and then slowly over the next few days developed a fever and was put on antibiotics by the GP.

Yuval and I tried to keep the kids separate so as to keep Tova away from the virus. But of course she ended up getting it and yes again got croup.

Tova and I made it to the hospital at about 8am. She was given pred and monitored. Her O2 levels were fine, but it was obvious she was working harder than normal to breath. The strange thing was I couldn't tell if she had croup or not. Normally she has that barking cough. But I couldn't hear it this time. She seemed to have Asthma. However, after about an hour or so the bark appeared and the doctor told me that the virus had caused Asthma AND croup. wow. Poor chicken.

Yuval took Nissim to Savta Aviva's house for the day while he went to work (and Savta Debbie was in Canberra).

Tova wasn't interested in eating nor drinking much and we didn't push her. It is good having Nissim to learn from, Yuval and I watch Nissim when he is sick, he goes off his food, gets a little grumpy and flat and so does Tova (don't we all?).

A few hours past, perhaps it was about 12pm and the doctor and I agreed that Tova was 'well enough' to go home. I got home, washed the floors, hung out the laundry, did another load and changed the bed linen.

Tova started to breath terribly again, so off we went, back to the hospital. We stayed in Emergency until about 8pm and then on the ward over night. We got home at about 5.30pm this evening.

Tova ate dinner. She isn't her usual self but she is better than she was yesterday.

Nissim is well now, just a little bit of a cough.

Tova had a massive sleep at the hospital today, I was worried she would stay up all night, but she went to bed at the normal time after bath and books (7.30pm).

I am not as exhausted as I should be, but I do feel revolting due to all the chips and chocolate I lived off from the hospital vending machines. Gross.

Other than that, eating is the same. Perhaps next year when Tova is in creche with other kids she will learn how to eat more independently. Other kids are apparently the best teachers. I hope so!

Very Sad News and Everything Else

I was laying on the fold out hospital bed this morning (more about that to follow). Tova was still sleeping in the cot next to me. It took me a while to wake up, I spent the first 20 mins just staring at the ceiling, which isn't as boring as it sounds because I was in the children's ward, where the ceilings are painted with all sorts of cartoon characters. I was staring at stars and a space man.

Tova was still sleeping so I turned on facebook on my phone. My phone with Vodafone has such bad reception in the hospital, in ER there is no reception at all, which is really annoying because in an emergency I usually have so much to organise, like canceling appointments and telling family what is going on. So, I was trying to load facebook, which was taking ages, I could read the grayed out status from one of the mums who was in Austria with us (Lucy's mum from Ireland, whom is continuously in my thoughts). The stupid reception wouldn't let the page load properly for about 5 mins. All I could read was something like "I am so sorry to hear about our friend all the way on the other side of the world, poor Ollie".

I was getting really annoyed and scared. Finally the page loaded. I am so devastated to write that Little Ollie from New Zealand, who was in our weaning group at Graz, has passed away. OMG, I can't believe it. It feels very surreal to write about him in the past tense, but he really was adorable and treasured. His 3rd birthday is coming up very soon, I remember that he had his birthday in Graz. Wow, the family must be torn in all sorts of horrific and traumatic ways. My heart goes out to them. I am so sorry to hear this news. He had a lung infection and just couldn't fight it. Unbelievable.

So, I was laying there reading this, while next to me was my little Tova back in hospital for the 3rd or 4th time since Saturday now diagnosed with Asthma, Croup and a LUNG INFECTION! wow. 3 things that can be fatal to our fragile/strong babies. wow.

When she woke up this morning I hugged her just that little bit tighter. Actually we were rolling around and playing in my fold out 'bed', until a nurse came in and busted us. Time for Obs.

We were sent home on Sunday from hospital. Tova wasn't breathing quite right and I kept thinking to myself that if she was like this and we hadn't been to hospital yet, I would be rushing down there for sure. But they had said that there was nothing else they could do for her and that home was the best place for her. Not sure why I fall for that every time, but I do. Even though I knew something wasn't right, I was happy to go home because they weren't doing anything different to what I would be doing at home.

Monday morning we went to the GP, she sent us home, then in the afternoon we (Yuval and I) called the ambulance. They came, looked at Tova, took her temp (over 38), were concerned and wooshed Tova and I off to the hospital around the corner. The Ambo guys were so amazing, what lovely compassionate people! I am really touched by their kindness.

We spent the next many hours in the Emergency Department. Tova was observed. Eventually we decided that it was safe to go home. But still I wasn't sure, but I didn't know why, other than Tova breathing short fast breaths, I couldn't explain it. The Doctors couldn't hear anything on her lungs and she wasn't croup breathing nor was there any wheeze. They did say we could stay there for a few more hours or even the night if we didn't feel comfortable going home. They told me that the ward had no beds even if we wanted to go up there we couldn't. The ER was so busy with families coming and going and the waiting room had plenty more waiting to get in. I haven't noticed it being that busy before.

Home we went.

Tuesday Tova was still vacant and exhausted. But I wasn't sure what to do because the doctors had told me Tova was fine. hmmm. So Tuesday night Tova wanted to go to bed early even though she had spent much of the day sleeping. She woke at about midnight coughing, choking, croup breathing and wheezing a little. Yuvie and I gave her panadol and ventolin. Eventually she settled enough to sleep, she was still breathing with difficultly, but again, I was confused.

At 3.30am ish, she woke again, this time Yuvie was very worried and called the Ambulance. They came very quickly. They were quite/very worried and gave Tova a ventolin neb, took her temp and other obs and again Tova and I were whooshed away to the hospital around the corner. We were put in the bed in ER that is closest to the doctors/nurses station (this is the spot where we often end up, when we are in this bed, I know it is bad). Tova was given the good old Adrenalin that works quick. I think they gave her more pred too. Tova's breathing responded really well to the Adrenalin. It was the first time since Saturday that I had seen her breath almost easy. She was also put on humidified 02, which helped her lots!

Sometime, many hours after we go to ER, Tova had a chest xray, she has a lung infection. She was quickly put on Antibiotics. I mentioned to them that an IV would distress her much more than the Oral medicine, because finding a vain in Tova is almost impossible, it would distress her so much. I was pleased that they didn't feel that they HAD to do IV. I also convinced them not to put the tapes on her face for the 02prongs, that stuff is so hard to get off without causing Tova pain. So, that was good.

We spent the night and this morning in Hospital. Tova was breathing so much better this morning, pretty much like normal, with the occasional cough. But not a croup cough, just a normal sick person cough. Yuval and I decided as Tova was so much improved, it was best to take her home because of all the sick people in the hospital (we didn't want Tova to catch anything more).

I am hoping so much that this is the end of it. I almost know it is. Her breathing is almost perfect now, not like the past few days. I can't believe I came home with her breathing like she was over the past few days. I should have never left the hospital on Sunday. The doctors told me that they didn't pick up on it because when the listened to her chest there was no noise, usually with a chest infection they can hear noise. There was no indication that she needed an xray. I don't know, she was clearly struggling to breath, something was clearly wrong. I just don't know why I didn't question it more. I guess I didn't know the questions to ask. NOW I DO! If it happens again I will know what to ask for.

Nissim came in on Wednesday morning with Yuval (before Yuval went to work and before my mum went to pick Nissim up). Nissim was a little concerned about Tova and the hospital. But was a good boy. He just kept telling Yuval that he and Nissim should now go to Nissim's house. He also recommended that it would be best for Tova and Ima to come home too, but was ok when I told him that Tova and Ima had to stay for a little longer.

He has been at mums and creche, he will go to mums again tonight and home tomorrow evening. Mum's are great. I miss Nissim loads, but I need to get some rest tonight before my eyes fall out of my head.

Tova has gone off her food and hasn't really eaten much since Saturday. I would be scared to weigh her. However, when we arrived in the hospital on Saturday they weighed her. She was 10.8something.  Wow, almost 11kg!

OH, also, one of the doctors (Dr Debbie from King David, I know this because she pronounced Tova's name correctly, my first reaction was "oh, you are Jewish", she thought that was funny, I said I knew because she didn't say toe-va). Anyways, this doctor said that one of the reasons Tova may get Croup so often is because when she was intubated as a baby for so many months, it possibly left scaring (oh my poor baby suffered so much back then). When there are scars on the upper airways, it can contribute to the frequency and symptoms of croup. Interesting.

We will miss you Ollie, you will always live on in our memories you precious little man!

November Already

This time two years ago Yuval and I had just found out that our funding was approved for Graz. We were busy getting married and making arrangements to get to Austria.

This year, we are relaxed at home and all eating way too much. I have an extra 7kg, Yuval more than that and the kids, well they eat too much but burn it off very quickly.

Tova woke with asthma yesterday and the day before. I gave her ventolin both mornings which seemed to fix it. I don't remember Tova ever having asthma without being sick. The first morning I packed my bad ready for a stay at the hospital, but nope, she improved and was perfectly fine until the next morning. Again no hospital visit.

This morning she has woken up fine, no asthma.

This is quite a milestone. Perhaps those hospital visits are going to now be memories.

Eating is pretty much the same for Tova.

It isn't a burden but I would like her to self feed and eat dry foods sometime soon. Life would be dramatically different if she was able to do that.

Her speech is improving slightly, which is lovely. I think it is still only Yuval and I (and Nissim) that understand her 'talking', but that works for me at the moment.

It is nice that Nissim understands Tova. He got very upset this morning because Tova slept in (due to waking at 4.30am, yawn). He was worried because she wasn't at the breakfast table. He then was very happy when she woke up and joined us.

Ears

Tova had an appointment with the ENT a week or so ago. Both her Grommets have grown out, he said she will need them again.

He also mentioned that even though this seems like an ongoing condition, eventually it will sort its self out and she won't have ear/grommet issues for her entire life. Good to know.

I am pretty sure that if she would chew some food, talk or have better muscle tone in her mouth, she wouldn't have all this fluid building up in her ears.

At least she is using her mouth now. It has been close to 2 years since we left for Graz. Yuval and I got married in November 2009, then trotted off to Austria in January 2010 and returned in Feb 2010 with an eating Tova.

Our new speech therapist has been great with all aspects of Tova's oral issues. She has been working on speech and progressing further than any speechy before. Tova really loves her. The Speechy has also started helping me with feeding Tova and the issues that has attached to it. We are going to try and work out how to progress Tova onto the next stage of eating. Good luck to us.

My goal is to get Tova to a stage where I can pack her a sandwich plus a drink in her lunch box and send her on her way. Self feeding, chewing and no puree!

Tova has really started to try and self feed, she takes the spoon from my hand and knows what to do with it. She has also started enjoying grabbing big handfuls of puree and throwing them onto the floor, especially if I have just cleaned the floor.

Yuval and I took about 6 big bags of toys that the kids don't use anymore to the op shop yesterday, it feels so cleansing!

Nissim is learning toilet training at the moment, that is interesting and emotional. Emotional for him. He is finding it a bit overwhelming, but we aren't rushing or pushing him.

We love BORING

There really isn't much to report.

Tova is still eating only puree/lumpy wet foods.

I am still feeding/drinking her every 2 hours.

She is happy, growing, gaining.

Nissim is lovely. He eats well sometimes and not others.. I guess that is a part of being 3!

Internet

Eating is pretty much the same. Mashed, a few lumps, soft and wet foods only.

Tova is trying to do some self feeding, grabbing the spoon and asking for the glass to drink from at drink times.

We are doing more point percussion to try and get better muscle tone in her mouth, hopefully that will help. We are doing a bunch of other therapies too such as feldenkrais and more speech therapy.

At least she is eating, drinking and growing. She looks like such a 'big girl' now. I was watching her from the window at play group today. She was sitting on the little stool smiling and watching as the 'teacher' was singing the good bye song. Something about her just looked so grown up.

Nissim is being a good boy mostly. It is fun watching him be 3. When he meets new people (at the park for example) the first thing he tells them is "hi, I have short hair". It is his pick up line. So cute!

The last time we were in hospital with croup the doctors told me that some kids get repeated cases of Croup and can do so for years. Therefore I have decided to buy a dongle for wireless internet. That way when we go to the hospital I can play on my computer while we are there.

My other thoughts on this are, if I do buy this dongle, get a plan and pay loads of money for it, Tova won't get sick again.. Because that is how things seem to work.

So, I went to the shops to find out about prices etc. Only to be informed that because I have upgraded to Lion, no dongles are currently compatible with my computer.  However, I am sure that this can't really be true (I am yet to find the the time to research the facts). If it is true, the updates to the drivers can't be too far away and I will get one.

ER, PICU, Ward and home

Croup again!

Nissim and Yuval have been a bit sick for the past few days, Yuval even taking a few days off work and spending heaps of time in bed sleeping. I haven't been feeling 100%, but have been ok. Tova was acting fine up until about 9pm on Wednesday night.

Yuval and I thought Tova was snoring unusually heavily, but she was happily sleeping so we didn't think we should wake her. At about midnight we put the humidifier in her room. At 2.30 she woke with that horrible croup cough and crying. By 2.45 we were in the ER and Tova was given Adrenalin. It worked pretty much instantly, calming her breathing almost completely. However not long later she started having troubles again, so she was given another lot of Adrenalin. This time it didn't work as fast/well and again after some time she was given another lot of Adrenalin and some Pred. PICU came down to meet her, as they do after a child is given 3 doses of Adrenalin. I was given the 'if she doesn't recover soon, we have other ways to make her comfortable' talk, (which of course they mean intubating her).

Tova was taking her time to stop that croup cough and horrible breathing so we were taken up to PICU. The second Tova noticed the cot from her pram, she started to smile. Then almost the moment she got in it (laughing) her breathing calmed and the nurse said "what are you doing in here, you are too well to be here". :-) Yep, I agreed! That is actually a really good thing to hear!

After spending most of the day in ICU for observation, we were moved to the ward. We were at first given the bed in-front of the nurses station that has the sink pretty much in the area where my bed would fold out for the night. And all the patients and nurses in that room would be using for the day. The first thing I did was ask to be moved. They are usually really good about asking to move. They have always moved us when we have requested in the past (usually for the same reason, but sometimes because we have been next to a challenging family).

The head nurse said that because we had been in ICU we had to be near the nurses station. I told her that Tova was just pretending to be in PICU, it was really only done for a precaution.  So after much pleading from me, we were moved. Our new bed was in a great spot all things considered. Of course the room was noisy and everyone particularly disrespectful of the other families children trying to sleep. My body was in shut down and I managed to sleep through the noise and lights for a couple of hours from about 10-midnight, Tova finally sleeping from about 10pm. The noise woke me for an hour or so at mid night and then Tova woke me at about 2.30 for an hour or so. I think she now has a flu/cold.

After she settled I completely collapsed. I didn't hear anything from the nurses or other families. I had 2.5 hours sleep the night before and was too tired for my ears to work. Showering at the new RonniMac family room was quite a treat. Tova stayed asleep pretty much up until 9.30, and would have slept more if we hadn't been discharged so early.

It was quite remarkable being 'let out' so early. Last night the Dr came around before going home and asked me if our day had been boring, I replied that it had. He said that he started work at 8.30am and would come see us first thing. If I told him that our night had been boring too, he would let us go right away (which in doctor means a few hours). It was a boring night in respect to all things croup related, so we were home by about 10am!!!!

Oh how I would love to stay in bed all day today.

Tova seems fine now. I gave her some panadol when we got home and she ate breakfast. She has had some green snot, so I guess she now has a cold. Nissim is a bit grumpy, I think he has the end of a cold and is bored because I am so boring today. Poor boy.

I am so looking forward to bed time tonight, and healthy food. When I am in hospital with miss T I eat so much junk. And to make it worse, the new family room has free cake and chocolate biscuits.. Great!

The doctors said that some kids just get Croup and they don't know why. And she may keep getting it for a few years.. not what I wanted to hear. But at least I can feel somewhat prepared. I usually think that this is the last time Tova will get Croup, and get shocked and saddened when she gets it again. Now I can at least know that it is quite possible that she will get it again and be surprised if she doesn't.

Well, it is great to be back home for miss Tova to get well. AGAIN.

One is 3 and One is 4

My tiny little ex 553gram 24 weeker just turned 4 years old.

It was fun having two three year olds for a couple of weeks. Now it is fun having one 3 and one 4.

Happy birthday princess.

We went to uncle mordi's cafe for birthday coffee. They made her a sticky date pudding cake with a sparkler, she loved the sparkler. I loved the pudding.

Saba gave Tova some of the sauce and ice cream from the cake. Tova isn't able to eat her cake yet (unless I puree it). So the condiments had to do. I look forward to the birthday where Tova grabs a piece of cake and eats it 'as is'. One day!

Nissim ate some.

The kids got about $150 cash, so we went and brought some crazy expensive clothes from Seed and Country Road. Every time I asked Nissim if he liked an item of clothing he replied "I don't think so!". So cute!

We are meeting a new speech therapist tomorrow, not that there is anything wrong with the one we see now (she is lovely and helpful). We just figure the more therapy the better, and another point of view can't hurt. Perhaps this one can help us get Tova to chew and eat dry foods.

I wonder if it is more than just low muscle tone in Tova's mouth? We will see. I wish there was a feeding clinic for issues like Tova's here in Australia. I would love to go to an intensive feeding program (live in style) for 10 days. The only ones I have found are either closed or only take severely CP and other special needs kids, they told me Tova doesn't have a severe enough special need... BIZARRE, because I would have thought that anyone who can't chew, can only eat purees and can't self feed is severe enough. Not to worry, we will find a way. Hence the new speech therapist.

Birthday Boy

Tova is eating almost normal quantities of food again thankfully.

We now have two 3 year old children in the house. Tova is 4 in a few weeks and Nissim just turned 3.

They had a big birthday party in a hall next to a park. It was great fun and the sun even came out to help us celebrate. I didn't see Nissim for the entire afternoon. He wasn't interested in me and spent his time playing with friends and in the park (at least that is what I have been told).

Tova was a good girl and enjoyed herself right up until the end. By the time most people had gone home Tova had also had enough and insisted on going home, so the two of us left Nissim and Yuval to tidy up. They had loads of helpers such as cousins and grand parents. To whom Tova and I are very grateful.

Savta Aviva made two amazingly beautiful birthday cakes, I will attach a photo.

Nissim waited for two sleeps before opening his presents on the morning of his birthday. He was so excited to open them and every single one was fantastic. Thank you everyone for being so generous! We are waiting to open the rest of the presents on Tova's birthday.

Of course, turning 3 means Nissim had his hair cut. Wow, I can't stop looking at him. He looks like a little boy! Last night I crept into his bedroom just to take a look at his hair again. He really looks different, his entire face seems to have changed. Of course he remains the cute little man that he is.. Take a look at the pics.

Also, surprisingly, Nissim didn't react at all to the hairdresser nor Yuval cutting his hair. Yuval did the first big cut and snipped off Nissm's pony tail. When we first arrived at the salon he happily sat in the chair and let the lady touch his hair and put the gown on him. Really, we were all in shock about that more than the actual hair coming off. It was really strange. I think it must be all the preparation we did with him over the past few months, where we explained every single thing that would happen on the day. He was simply excellent!

:-)

Happy birthday little man! We love you so much.

Off Her Food

Since being home from hospital earlier this week, Tova has slowly gone off her food.

While she was in hospital and for a day or two after, she was eating like her normal piggy self. But now for the last couple of days she doesn't want to eat much at all. She is drinking which is a good thing.

The other day she slept until about 9.30am from about 6.45pm the night before! She has also been sleeping for an hour a day and requesting to go to bed pretty much from the moment she is awake.

I hope this sickness/tiredness passes quickly.  I have a feeling that her ears are hurting too, because when I put her ear plugs in (for the bath) she cried a little (which never happens).

We have the kids birthday party tomorrow. We are all hoping that she is at least 99% better so she can come to the party.

I haven't panicked too much while she has gone off her food. But it does still make me nervous. It shouldn't. Most people go off their food when they don't feel well.

Nissim is fine, he has been playing with his cousins who are down from NSW for a few days. Tova signed to Timna (cousin) "I love you"!!! So sweet!

Tova went to bed very early again tonight. I suppose her body is telling her that she needs sleep to get over what ever it is she has, perhaps croup takes this long to get over even though she didn't need oxygen or adrenalin. Maybe it is the steroids working their magic, yet disrupting her sleep pattern.  If she is any worse tomorrow, I will take her to the Dr.

Tomorrow will be filled with cake, lollies and junk food! yay!

I miss the gym. I haven't been for about a month. Hopefully we will get back there on Monday!

Croup again

It's been a while between sicknesses. Months even! I was wondering how long we could go without illness and hospitals.

Yesterday Tova woke up with labored breathing and a barking cough. No other symptoms. Ventolin did nothing so I figured it was Croup.

Yuval was at work (he started at 4am) so I asked my mum to pick Nissim up and take him to creche. Of course she did, she is always there for us!

I took Tova to the hospital. The ER was completely empty, so we were ushered in right away. Croup was confirmed, her lungs were clear and she was given Pred. No oxygen, no adrenalin, only pred! Easy!

Through out the day she didn't get better, but didn't get much worse.

The doctors worried a little because of Tova's history and proven ability to deteriorate quickly, we were kept there for the entire day and over night mostly for observation.

The Pred made her sleep for hours during the day and kept her awake for half the night.

All the medical staff were lovely.

Mum picked Nissim up from creche, so Yuval could spend some time with Tova and I at the hospital. Nissim ended up sleeping at mums too! I always feel torn when things like this happen. Nissim gets passed around and all I want to do is be home all together. He doesn't mind at all. He loves staying at Savtas house, it is his second home.

As usual on the hospital ward I ended up in a room with someone that had loads of visitors including other small kids. I never understand that. I don't want Nissim anywhere near the place nor have to worry about guests.. But unlike usual, none of my room mates turned their lights on during the night, which is lovely.

It wasn't an especially hard night, but it was broken and uncomfortable sleep for Tova and I. One nice nurse gave me panadol to give to Tova to help her settle. It helped her.

We were discharged at about 11am. It is always so nice to be home.

Tova is in a good mood.  Nissim seems a little tired and fragile, but very cute.

Tova has remained with no other symptom, other than funny breathing that sounds loads better today. She is perfectly happy.

One week until the Nissim haircut. WOOHOO

Heavy

Tova feels heavy. My arms hurt from carrying her. She is still a tiny dot on the planet, but getting heavier. I wonder what she weighs? Perhaps I will weigh her sometime soon out of curiosity. Mostly to find out if it is just me getting weaker.

Tova, Nissim and I are in Tasmania visiting family and friends.

We went to a birthday party for a little boy turning 5, whom is also a Graz graduate! And yes, he ate his cake!

Flying here was very easy. I am not sure why, but my kids are very easy on the plane. I put them in their seats and they didn't move until we landed. Tova was a bit worried by the loud noise of take off and she settled very quickly once the sound stopped.

I never stay here long enough. Last time I was here for about 5 days, this time about 10. Next time I am going to stay for at least 2 weeks. It is so beautiful and easy going here.

Eating is good. Not much to report. I have been using the dvd player here just because I don't want to struggle in an unfamiliar place (Tova is a bit out of sorts because it isn't familiar and aba isn't here).

Lovely

Things are lovely and boring at the moment.

Nissim's creche told me that he is a good eater at creche, which makes up for the not so good eating at home (at least 2 days a week). I don't worry about him too much as he is happy and growing (so his clothes tell me) and there is no way we could force him to eat.

It is almost haircut time for him. In a matter of weeks that long pony tail will be a thing of the past and I will hopefully leave the 'are they twin girls?', 'what's her name' and 'she is so pretty' comments in the past! The big 3 years old is next month! He is booked in at a fancy pants kids hairdresser on his birthday. We have been preparing him for the hair cut for months and he is pretty excited to have short hair like Aba (and the promise of cake). However, there is potential for him to freak out. We figured that a hairdresser with play stations, flat screens and toys was probably the best way to go for a first haircut.

Tova has been eating heaps as usual. She is trying to feed herself more and more with the spoon and is having fun putting her hands into the food and hands into her mouth. She also likes to put food on one finger and then put the finger in her mouth. Clever!

Also, she has started allowing Yuval to brush her teeth with a real toothbrush and tooth paste. There is a process to it and she insists on the distractions he provides like singing and airplane sounds, but at least she is brushing her teeth!