# Monday, 10 June 2013

Chaya Devoira’s three word sentence

I took Chaya Devoira and Gittel to the park on Shabbos afternoon. One of the climbing frames there has a sort of arched bridge, over which Chaya Devoira decided to cross. Knowing that she has a problem with steep inclines, I moved towards her to offer some help.

She put on a fierce face (which is hard when she's so cute!) and shouted "No! Yaya!" (which is her way of saying her own name), then broke into a big smile, waved at me and said "Bye bye." She made it very clear that I wasn’t to help her, and she would do it all by herself, which she did.

She repeated the same thing a couple more times whilst we were there.

If someone had told me ten years ago that I would be so excited about a four and a half year old child saying a three word sentence, I think I would been surprised, but truth is, I was chuffed to bits. Whilst she is significantly more vocal than she was six months ago, she is still a long way off proper speech. However, a three word sentence is pretty impressive for her right now.

By contrast, Gittel had just finished reciting the last six of Shakespeare's sonnets, and was moving onto Milton! OK, so that's not quite true, but her speech isn't far off that!

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# Tuesday, 26 June 2012

Chaya Devoira banging a milk bottle

One of the children's breakfast time games is taking an empty milk bottle, placing the lid on gently and banging the bottle to make the lid fly up in the air. They then blow into the bottle to re-inflate it before repeating.

In this fascinating documentary, we are taken behind the scenes at Smile Gemach World Headquarters, and see Chaya Devoira banging the breakfast milk bottle...

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# Monday, 06 February 2012

Chaya Devoira and Gittel in a washing basket

Having a cuddle in a washing basket (two actually, but who’s counting?), Chaya Devoira smothered Gittel with kisses and hugged her as usual!

Chaya Devoira and Gittel in a washing basket

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# Thursday, 01 December 2011

Major developmental milestones reached

We are proud to announce that both Chaya Devoira and Gittel have reached major milestones in their development.

Chaya Devoira has learnt to blow raspberries, and Gittel has learnt to suck her thumb!

We are proud Smile

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# Sunday, 04 September 2011

Finally managed a half-decent photo of Chaya Devoira!

As anyone who has a child with Down’s Syndrome will know, they are generally extremely affectionate, loving and characteristic children, but correspondingly difficult to photograph! Despite my best efforts, my attempts to get a decent photo of Chaya Devoira have generally been doomed to failure. Most of them make her look gormless (which she isn’t, but you wouldn’t know if from my photography!) or half-asleep!

There was one very funny photo I caught of her eating a piece of cucumber. She loves food, and grabbed this cucumber as if it were a prized possession. She then climbed up on a chair (I guess where she thought we wouldn’t be able to take it off her!), and ate it with great relish. This photo (actually from the end of May) shows a lovely mischievous face as she keeps half an eye out for intruders…

Chaya Devoira eating cucumber

Anyway, whilst on holiday, we visited Foot Fell Park, which is superbly beautiful park on the southern tip of Lake Windermere. Towards the end of our day there, we had a nosh party (crisps, pretzels, etc) on a secluded piece of grass. I managed to catch Chaya Devoira off guard, and although she isn’t actually looking at the camera, it’s still a nice picture…

Chaya Devoira in Foot Fell Park

It’s taken me nearly three years to get that one! I hope it doesn’t take as long to get the next!

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# Thursday, 24 March 2011

Chaya Devoira gives the new baby a kiss

Chaya Devoira just toddled in to see her Mummy, who had just finished feeding the new baby. Interested to see what was going on, Chaya Devoira climbed up onto the bed and peeked at her new sister.

Knowing what an affectionate girl she is, the Boss put the baby on Chaya Devoira’s knee for a cuddle. Chaya Devoira immediately planted a bit, wet smacking kiss on the baby’s head (see the left-hand picture below).

Chaya Devoira gives the new baby a kiss

In the right-hand picture, Chaya Devoira is having her hair taken out of her eyes, where it flopped after the administered the kisses. She had just come out of the bath (and wasn’t really dressed, but had a dress over her pyjamas to see if it fitted), and so had floppy hair. I included the second picture as you can see more of the baby!

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# Monday, 07 March 2011

Chaya Devoira learns to walk!

One of Chaya Devoira’s main development issues (other than her lack of speech) is her poor motability. Whilst she can crawl reasonably well, she often does this with straight legs (so-called “bear walking). She has not yet mastered the art of standing for more than a few seconds at a time, and walking was something we assumed was still some way off on the horizon. If we hold a hand and lead her, she will walk stiff-legged with us, but will sit down as soon as we let go of her hand.

The occupational therapist in the special nursery she attends told us that Chaya Devoira once took four steps, but we had never seen this repeated, and so the excitement died down.

Imagine our surprise then, when on Friday afternoon she suddenly took a few steps. A couple of the other children were playing with her, and one of them stood her up and told her to walk. Amazingly enough, she did!

I ran upstairs to grab my camera, and got it switched on just in time to see a magnificent seventeen-step stroll across the room! This was followed by some less-successful attempts, but with definite promise.

This video shows the whole thing in glorious technicolour…

Since then, she has shown less interest in walking, but has been consistent in doing a few steps here and there. She has also started standing herself up without holding on to something, which is another promising sign. Obviously we are encouraging her as much as possible. but she has quite a strong will, and if she decides she doesn’t want do something, there’s no persuading her (unless we hold out some food of course!)

Anyway, all good indications of progress, however slow.

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# Thursday, 27 January 2011

Chaya Devoira as Rebbe Nachman!

Chaya Devoira came out of the bath tonight, and wandered off towards the boys' bedroom. She climbed onto Elihoyu's bed, and found his shloff kappel (yarmulka worn at night). Now Eliyohu has a rather bright yellow shloff kappel, emblazoned with the words of a well-known song about Rebbe Nachman of Breslov zt"l.

If you will forgive the full-frontal pictures of her big fat tummy, what happened next was very comical.

Seeing the kappel, Chaya Devoira picked it up and tried it on (left picture below), decided it was a perfect fit (centre picture) and reached out to grab the duvet and pull it over her head (right picture)...

Chaya Devoira tries on Eliyohu's Rebbe Nachman shloff kappel
Pulling the duvet up, she tucked herself up and snuggled down...

Chaya Devoira snuggled up in Eliyohu's bed

Not much you can say about that eh?

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# Monday, 20 December 2010

Chaya Devoira's hearing

a hearing aid (not as pink as the one Chaya Devoira has though)Chaya Devoira had a hearing test today. As our avid reader will doubtless remember, she had a moderate hearing loss in both ears, and was given hearing aids. She coped very well with these B"H, and showed an immediately improved awareness of what was going on around her.

She had another hearing test about five weeks ago, and came home with only one hearing aid. Her hearing had improved in her left ear to the point where she didn't need the aid, and was better in her right ear, although not enough to abandon it yet. We were told that this might be because it was the end of the summer, when all the flu bugs had died, and too early for the winter ones to kick in. We had to take her back in a month to see how she was coping with the cold wet weather.

Well, today was the day, and I'm delighted to report that she came home without any hearing aids! Apparently her hearing has improved to the point that she doesn't need them at all, even though she has a cold, and it's the winter. What's even better is that they don't want to see her again until March, instead of the standard one month that we were expecting.

Well done Chaya Devoira!

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# Monday, 11 October 2010

Chaya Devoira's hearing

No, she's not been in court, this is hearing of the audio sort!

Chaya Devoira had a hearing test today, and came home with only one hearing aid. Contrary to what you might think, this wasn't because she'd pulled the other out, but rather because the hearing was normal in one of her ears. There is still a slight loss in the other ear, but it's much better than it was when she got the hearing aids.

In fairness, the medical person (not sure what status they have, I wasn't at the test) said that this is the best time of year for hearing tests, as all the flu bugs have died off during the summer, and the weather hasn't gone wet or cold enough to allow them to breed again. We are keeping the spare hearing aid, and will see how she gets on over the winter. If she gets through the winter without any hearing loss, then we might get rid of the spare in the spring, and maybe even stop using them altogether.

Also at the meeting was the support teacher for the deaf, who has been working closely with the little lady since she got the hearing aids. She reckons that Chaya Devoira's speech is of high quality, and instead of teaching her sounds, we should concentrate on teaching her words. We are going to continue with the signing, as this has become a great help in her communication, but we are to play it down in favour of proper words.

All in all, an excellent report B"H.

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# Tuesday, 24 August 2010

New camera, and a cute picture of Chaya Devoira

Well, after about seven years, and almost 11,000 pictures, we finally decided to buy a new camera. Actually, that's not strictly true. We were wondering what to do with all our points from Tesco shopping, and had been disappointed at the selection of places that would take them around Carlisle (where we were going on holiday, which may get mentioned here one day).

Instead, we decided to spend some of the points on a treat, and used them against a new digital camera. Due to the amount of food our lot scoff, we had enough points to pay for most of it (holding back a few points for a post-holiday trip to Blackpool zoo, which might also get mentioned here one day). In the end, our posh new camera cost us a total of £11.94! Seems like a good deal :)

Predictably, the very first picture was of Chaya Devoira:

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# Wednesday, 24 February 2010

Chaya Devoira is the Shabbos Mammy

As our regular reader knows, Chaya Devoira goes to school, despite being only 18 months old. It is an integrated school, catering for special needs children, but with a reasonable number of children who don’t have special needs.

As with pretty much every kindergarten/nursery/etc around the Jewish world, they have a Shabbos party on Fridays, where a boy if chosen to be the Shabbos Tatty, and a girl is the Shabbos Mammy. Last week it was Chaya Devoira’s turn, so equipped with a tichel she waved a candle around whilst her “husband” made kiddush!

Chaya Devoira is the Shabbos Mummy

Judging by the picture above, it looks like one of the other girls was also lighting candles, but no-one minded, it was gorgeous! I’m not sure how much Chaya Devoira grasped what was going on, but she had a great time!

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# Sunday, 29 November 2009

Back home again

Despite our best hopes, Chaya Devoira was still on oxygen on Thursday, night, which meant they had to stay in hospital over Shabbos. The doctors wouldn’t let her home until she could manage for 24 hours without any oxygen. She was fine during the day, but still needed a bit during the night when her breathing was more relaxed.

Apart from the usual erev Shabbos jobs, this meant that we had to organise food for them over Shabbos. This added to the regular erev Shabbos chaos in our house! It wasn’t helped by the fact that I was coming down with a chest infection, and didn’t really feel like doing anything other than crawling into bed. Unfortunately, I didn’t have time for that, and bashed on anyway. Mainly thanks to my mother (who, along with my father had been staying with us all week) and Nechoma Bryna, we got there in the end.

We spent most of Shabbos wondering how they were doing, and when they would be coming home.

To our delight, we got home from shul on motzei Shabbos to find that the Boss had rung and said they were waiting for us. It was a joyous party that went to the hospital. On the way out of the ward, I stopped to thank the nurses for their care. Ironically, as we left, one of them called out to “See you again!” I felt like saying “I sure hope not!” but decided that this might be misconstrued.

So, we are whole again. Chaya Devoira still has some antibiotics, and has regular doses with an inhaler which she really doesn’t like, but these are a minor price to pay.

I wonder what will be next?

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# Tuesday, 24 November 2009

Chaya Devoira in hospital – a taste of times gone by (not a great taste either)

Ho hum, here we go again...

Just over a week ago (17th Nov for the date fans), the Boss took Chaya Devoira to the doctor as she had a temperature and was feeling under the weather. The doctor gave her some antibiotics, and told her to keep an eye on things.

Fast-forward to Shabbos, and Chaya Devoira hadn’t really picked up. If anything, she was worse than before. She still had a temperature, and was very listless and floppy. She hardly ate and just wanted to be cuddled (mind you, that’s normal!).

After Shabbos, we called the doctor who examined her and decided he wasn’t happy with her high breathing rate. He sent us down to the paediatric accident and emergency department of the local hospital for further investigation. A&E is the greatest place to be on motzei Shabbos, but it wasn’t as bad as it could have been. As it was a children’s A&E, we were spared the drunken louts that populated the next door adult A&E section.

After connecting her to a SATs machine (see this old blog post for our first encounter with a SATs machine), the doctor decided that her oxygen saturation levels were too low. They sped her into a cubicle, and put her in an oxygen supply. This brought her levels back up to an acceptable level, and we all breathed a sigh of relief.

To cut an increasingly long story short, she was admitted to the hospital later that evening, and went into the high dependency unit (HDU), where she was plugged up to the old familiar monitors.

By morning, they had identified the problem as bronchiolitis (see this old blog post for more about bronchiolitis), which is pretty much the same as last winter. They administered antibiotics, and so began the old familiar routine.

On Sunday, she seemed a little better, and was even interested in playing a little. She sat herself up for the first time in several days, and we even managed a few giggles.

Yesterday (Monday) she was deemed well enough to be moved out of HDU, but as they had not yet identified which strain of bronchiolitis she has, they put her into a cubicle instead of on the main ward. This is good for the Boss, as the main ward was fairly full, and consequently fairly noisy. She was getting little enough sleep in HDU, and would have got even less on the main ward.

She was managed most of her waking hours off the oxygen, but still needed it for feeding and sleeping. She was still on an IVU drip as they were trying to reduce the amount of milk she had, as a full tummy presses up on the lungs and makes it harder to breathe.

Today she was off the IV, and back on full feeds. To our dismay, she had a harder time keeping her oxygen levels up, and we feared that this meant that she was struggling with the bronchiolitis. During the morning, a doctor popped in who was on the ward when she was born. He was actually the doctor who told us that she had Down’s Syndrome in the first place, as was very proud of the fact that he could pronounce her name correctly! Apparently there is a “ch” sound in Urdu, and he was going around correcting the nurses who were calling her all sorts of strange variations.

Anyway, this doctor sais that the lower oxygen levels today could be that the mucus in her lungs is detaching itself, which is blocking her up. Whilst this sounds like a bad thing, it’s actually a positive sign, as it is the first stage towards clearing her lungs completely. Apparently the mucus detaches, then either gets coughed up, or absorbed into the body (not exactly sure of the medical details here), so even though it’s causing her slight problems, it’s a first step towards getting rid of it.

It’s funny how we had put this whole part of her life out of our minds, and how quickly it all came back again. We had naively assumed that she wouldn’t have such problems after her heart operation, but it seems we were wrong. Here I am again playing Mummy (with a lot of help from Nechoma Bryna and my mother).

As usual, every cloud has a silver lining, and despite the fact that I’m run off my feet and exhausted, the extra time I’ve spent with the children has been marvellous. It’s also been quite cathartic being forced away from work and the computer. Apart from two e-mails, I think this is the first time I’ve used the computer properly since last Wednesday. On the one hand, my work is suffering, and I had things that needed doing, but on the other, I’m kind of enjoying ignoring it!

Anyway, got to go. A housewife’s work is never done you know :-)

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# Monday, 26 October 2009

Chaya Devoira in a box of balls

On Chol Hamoed, we went to Gulliver’s World (family fun park) for a day out. Chaya Devoira went into a ball pool for the first time, and thoroughly enjoyed herself, bashing the balls and chuckling merrily. We realised that this was a very good developmental experience for her (good excuse eh?), and decided to buy some balls and a pool when we came home.

Having been amazed at the price of proper ball pools, we eventually found someone selling inflatable paddling pools for a few quid on eBay. We settled on one of these, and a separate purchase of balls. Having perused the offerings from both Tesco and the Early Learning Centre, who seemed to be about the only reputable people selling them, we went for the ELC balls, mainly due to the fact that the reviews there were good, whereas the reviews of the Tesco ones were largely negative, due to the soft and flimsy plastic used.

The balls arrived this morning. Not knowing quite how many we would need, we bought two hundred, which arrived in a large box. Much to the excitement of the other three little girls (and the complete indifference of Chaya Devoira, who was more interested in her breakfast), we opened them up. Not having the paddling pool yet, I emptied the balls into the box in which they had been delivered, and put Chaya Devoira inside.

The result? Total bliss for one little girl...

Chaya Devoira in a box of balls

For a girl who is supposed to have learning difficulties, she learned pretty quickly how to throw the balls out of the pool and across the kitchen floor! She then spent a very happy half hour bashing away at the balls, until the Boss removed her to get her dressed and off to school.

During the morning, the paddling pool turned up, and is now inflated in the kitchen, full of balls. Chaya Devoira is currently out at an appointment, but will presumably end up in the pool when she gets home. I reckon she will have until about 4:15pm, when the other little girls get home. At that point, she will either be removed to make way for someone else, or she will have company!

P.S. Just as an aside for those contemplating buying these balls, we weren’t hugely impressed with the strength of the ELC ones either. As you can see from the blue ball at the bottom right of the picture, they squash quite easily. I don’t know how well they will last when they get properly bounced upon. It may be that the squashiness allows them to pop back out again without splitting, or it may be that they’ll just split. We’ll see. If you are thinking of buying any, let us know and we’ll tell how these fared!

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# Thursday, 22 October 2009

Latest Chaya Devoira news

The exciting news is that Chaya Devoira has a tooth coming! You can’t see it yet, but you can feel it if you’re daft enough to put your finger in her mouth!

The other exciting news is that she sat herself up for the first time yesterday. She was lying on her tummy on the floor, and Aryeh Yehuda was making her giggle. She swung her legs out to the side (quite an amazing sight, I wish I was that flexible), round to the front and underneath her tummy. From there, she pushed herself up to a sitting position.

More news as events warrant. Watch this blog :-)

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# Thursday, 15 October 2009

Chaya Devoira on a swing

Had to share this picture. We went to Clifton Country Park the other day, and Chaya Devoira had a go on a swing. Apparently this was the funniest thing since Auntie Mabel got her string bag caught in the revolving doors, and spent the day doing the waltz!

Chaya Devoira on a swing

As she swung backwards and forwards, she kept laughing heartily. The above picture shows her mid-laugh.

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# Monday, 07 September 2009

Chaya Devoira’s first birthday

Amazingly enough, a year has passed since Chaya Devoira was born. In many respects the time has flown by, and it’s hard to believe she’s one already. Having said that, it’s been a long year!

Before I start waffling (common habit, as the regular reader of this blog will know), here is a picture of Chaya Devoira cutting her birthday cake...

Chaya Devoira cutting her birthday cake

Just before I clicked the button, she was actually looking at the cake, and could even have appeared to be interested in cutting it. Unfortunately, she got distracted by some interesting air molecules to her right, and that was that.

Her interest was soon rekindled when the Boss shoved some cake in her mouth though :)

The crown was made by the people in her school, and she wore it pretty much the whole day. For those curious, she does go to school, although only for two hours, three times a week. The school is for children with special needs, and they do all sorts of interesting and clever things with Chaya Devoira, including the obvious physiotherapy and speech therapy (which at this age is more to do with eating and drinking than speaking, but it all works towards the same goal), to the less obvious hydrotherapy (floating around in a bathtub) and weird massages in a multi-sensory room. This involves rubbing her down with a scouring pad, whilst pretty lights flash on and off!

We interrupt this drivel for a cute birthday picture...

Chaya Devoira cutting her birthday cake

Reflecting on the past year, we have learnt a lot, and grown a lot. Chaya Devoira has brought a lot of Simcha into our lives, as well as helping us get in touch with our own selves a lot more than we did before. We went through some emotional rollercoaster rides with her, but Boruch Hashem, we seem to have come out on top.

Happy birthday Chaya Devoira, we look forward to many more years of your smiles. I could write a lot more, but I think I might get a bit emotional for the generally irreverent tone of this blog!

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# Thursday, 23 July 2009

Chaya Devoira’s check-up

We went to London on Sunday for Chaya Devoira’s latest check-up. This was a routine one, just to keep an eye on her after the operation.

B”H, they were very pleased with her. The slight leak on one of her valves is still there (makes her sound like an old car!), but they are not worried about it at all. They took her off one of the two medications that she was still on. They left the other as it helps give her heart a little more oomph, which will help her cope with the leak.

We are going back in early Feb, and hope that they will take her off this other medication as well.

Other than that, she’s doing great. B”H, she’s developing a lot better than we had expected, and whilst it’s too early to say for sure, it does look hopeful for the future.

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# Tuesday, 09 June 2009

Simcha and Chaya Devoira

The physiotherapist came today, and she was very pleased with Chaya Devoira’s progress. During the session, she managed to persuade Chaya Devoira to sit up all on her own! This was the very first time she has ever done this.

Unfortunately, by the time I came in the room and saw what was going on, Chaya Devoira was getting a little tired, and was distracted by the camera, so I didn’t catch her first ever sitting.

The therapist also encouraged her to kneel up and lean on the edge of the play nest, which resulted in this…

Chaya Devoira

Simcha, not wishing to be left out, came over to give Chaya Devoira a hug, causing Chaya Devoira to flop backwards! Still, it made a cute picture…

Simcha and Chaya Devoira

Chaya Devoira has learnt how to play with her feet, which apparently is an important developmental stage. I get told off for things like that, but I guess that’s the difference between being eight and a half months and being six and a half years old (which is what Shayna Brocho reckons I am!).

Simcha is now outside on her trike, learning to use the “puddles” as she calls them. Instead of sitting on the trike and walking along, she can now puddle!

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# Thursday, 14 May 2009

Update on Chaya Devoira

Well, it’s been some time since I last blogged about Her Majesty, also known as Chaya Devoira :). This is partly due to not having as much to report as the previous few months, and partly ‘cos my computer broke and I didn’t have enough time to think about blogging whilst I was trying to fix it, putting up with a temporary one while the new one arrived, uninstalling all the rubbish that came on the new one, installing all the fab stuff I wanted, catching up with a backlog of stuff caused by the above, etc.

All of which is a poor excuse, but as it’s the best you’re going to get, you’ll have to put up with it!

The great news is that Chaya Devoira is doing really well B”H. Since the operation she has been like a different child. She eats well, and has started on solids. We had her assessed yesterday for a local Jewish special school, and they gave her a very good report. It’s obviously too early to tell properly, but the indications are that her condition is mild, which gives us a lot of hope for her.

Here’s a moderately recent picture of Chaya Devoira fast asleep, hence the dark shadows around her eyes...

Chaya Devoira

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# Thursday, 26 March 2009

Our trip to London

Chaya Devoira had an appointment back in the hospital last Tuesday, as a follow-up from the operation. We took the opportunity to have an afternoon off, and went down on Monday afternoon.

We spent the afternoon in the Natural History Museum, and the Science Museum. This was a bit like being a little boy again! When I was young, my mother used to take me to London for the day on my birthday. We spent the morning in the Natural History Museum, followed by lunch in one of the kosher salt beef bars that used to exist in Soho (not the sort of place a Yiddishe boy would go nowadays!), and the afternoon in Hamley's toy shop, spending my birthday money.

As previously blogged, we spent far too much in Hamley's last time we were in London, so we decided not to do that again. No, this time we spent far too much in the Science Museum's shop! They have some amazing stuff there, although it's pretty pricey. Trouble is, the stuff is so tempting, it's hard to resist! Anyway, we got some more birthday presents, and some afikomen presents at the same time. I even got my own birthday present, which of course I've forgotten about, and will be very surprised about when I get it!

As usual, I've waffled on and forgotten the main point of this blog point. Although spending some time together was an important side benefit of the trip, the main purpose was to take Chaya Devoira for her appointment :-)

They did the usual stuff, a heart scan, ultrasound thingy, some other clever things too. The important point is that the doctor gave her a very good report boruch Hashem. He confirmed that there is a small leak in one of the valves of her heart, but was quick to point out that this was not significant, and could very well never affect her. Even if it requires correction, this could be a matter of decades!

After the appointment, we had lunch in the arboretum of the hospital, where we spent many hours last time. The sun was shining gloriously through the glass roof, and the windows were open, creating a lovely summer feel to the meal.

We then went back to the train station, with a quick stop in Trafalgar Square to say hello to Lord Admiral Nelson, who looked somewhat nervous on top of that column! Sadly the famous masses of pigeons that always used to be a feature of the square were gone. There were signs around asking people not to feed the pigeons, and very few pigeons to feed. I guess they read the signs and went elsewhere!

Anyway, we returned home, tired but happy in the late afternoon, just in time for the children's supper, where we sang Happy Birthday to Eliyohu, for it was indeed his birthday. Supper was spicy chicken cous cous, with boozy trifle for dessert. Yum.

We are going back for another appointment at the end of July, at which they intend to take her off the remaining medicines. After that, it should be just an annual appointment to keep a general eye on her.

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# Friday, 20 March 2009

Chaya Devoira laughing

The Boss was jiggling Chaya Devoira up and down, causing her to laugh and giggle. I managed to catch a couple of shots of her...

Chaya Devoira laughing

Maybe I'll try video next time, because the smiles look far better in motion, and the giggle are just gorgeous!

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# Sunday, 01 March 2009

Chaya Devoira smiling

Boruch Hashem, following her operation, Chaya Devoira now smiles quite a lot. They are often fleeting, but there are more and more of them. Hopefully they will last longer too, which should make for easier photography!

Anyway, I managed to capture two smiles, and couldn't decide which to put on here, so I put on both!

Chaya Devoira smiling

More smiles as I can grab them :-)

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# Monday, 23 February 2009

Finally home!

I am typing this blog post with Chaya Devoira on my knee :-)

They arrived at around 6:30pm this evening, well, tired, and free of wires and tubes. The Boss worked out that Chaya Devoira has only spent four more days at home than she has in hospital in her entire life. Let's hope that's going to change from now on.

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# Sunday, 22 February 2009

Ooh-err, they could be home tomorrow!

Having blogged this morning about how they might be home on Tuesday or Wednesday, the Boss rang before to say that the doctors had decided that they were being overly cautious when increasing Chaya Devoira's medicine, and they had done two increases today.

They need to take a blood sample in the morning, and wait for the results, but assuming that it is clear, they should just discharge her immediately. This means that they could be out by lunchtime, and maybe home by early evening!

Yippee :-):-):-):-):-):-):-):-):-)

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I came home, but they didn't!

After all the build-up, we woke up on Friday morning to be told that Pendlebury had had an emergency admission at 5am, and there wasn't a bed for Chaya Devoira. After some discussions over the telephone, it became clear that she wasn't going anywhere that day. As the following day was Shabbos, and they don't normally transfer non-urgent cases on a Sunday, this meant that she wasn't going anywhere until Monday at the earliest.

We were now left with the difficult decision of what I should do. On the one hand, the children were all safely staying with friends, and the Boss needed me with her. On the other hand, we had told them all that we were coming home, and we were concerned about the effect that not coming would have on them.

After some lengthy discussion, we decided that I should come home by train. The hospital in London said they would keep in contact with Pendlebury, and see when a bed became available.

So, it's now Sunday morning, and they are still there. There is an ambulance booked for tomorrow morning, assuming that Pendlebury can find a bed.

The good news is that Chaya Devoira is doing great, putting on weight nicely and behaving herself. She is totally tubeless, wireless and not connected to any machines at all. You can actually see her pretty little face for the first time in months!

They increased the medicine again this morning (see the post from Thursday about that), and have only one more increase to do. This means that they may be discharged completely on Tuesday or Wednesday - hurray!

Thanks to everyone who sent such lovely messages. We appreciate every one, even if we didn't get chance to respond individually.

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# Thursday, 19 February 2009

Looks like we're going home tomorrow!

The doctor came round this morning, and said that he had spoken to the people at Pendlebury, who are ahppy to take Chaya Devoira back tomorrow (Friday), as long as they can find a bed. An ambulance is being arranged, which will leave fairly early in the morning. I will stay in the hospital tonight, as it's very unlikely I could get down to the hospital early enough. We impressed upon them the importance of going early, as it is Friday tomorrow.

Chaya Devoira will need to stay in Pendlebury for a few days, whilst they wean her off one of the post-operation drugs, and monitor her weight. This means that she will be in hospital over Shabbos, but at least she will get loads of visitors as soon as Shabbos ends!

So, we just have to daven that there is a bed available.

Chaya Devoira continues to feed well B"H, so it looks like the feeding tube may soon be redundant - Hurray! The nurse took off the nasal specs that were used to feed oxygen into her nose. When she has come off oxygen before, they have left the specs on in case they were needed. It seems that they are satisfied that she isn't going to need them again. This is great news.

What's even better is that you can see most of her pretty little face now. The feeding tube is still there, but that's all. Hopefully that will be gone soon :-)

Update later that day...

It's official, we are being transferred back up north in the morning. They want to keep an eye on her for a few more days, partly to make sure she puts on enough weight without being fed down the tube, and partly because they are giving her a drug that she will need for a few months, and they need to increase the dosage gradually, checking her blood pressure every 15 minutes for the first two hours after each increase.

However, being in hospital in Manchester is defintely better than being in hospital in London. At least the other children will be able to visit.

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# Wednesday, 18 February 2009

Good news about Chaya Devoira

Boruch Hashem, Chaya Devoira continues to go from strength to strength. They took her off oxygen completely this morning, and she stayed off it until around 5:30pm.

When they did the surgery, they attached wires to the electrical control centre of her heart (no, I didn't know it had one either until the other day), in case there were any problems with heart rhythms. If there had been, they would have been able to attach a pacemaker to the wires and regulate her heart. As this hasn't been necessary, and the chances of it being necessary are now vanishingly small, they removed the wires. This is another step towards home :-)

However, the best bit of news altogether was that the doctor decided that Chaya Devoira can start feeding properly, instead of using the tube. They are leaving it to the Boss to judge if she is getting enough milk at each feed, and will monitor her weight to make sure that she is taking enough. Although she is going to need some time to build up her strength fully, she did well today, and scoffed a lot!

We are hoping to get some decision tomorrow about when we can go home. As they still need to wean her off one of the medicines, and they want to keep an eye on her weight, it is unlikely that they will let her leave hospital before Shabbos, but it does seem quite likely that they will try and transfer her to Pendlebury before then. This will be a great move for all of us, especially the other children, who haven't seen the Boss or baby for a week now. We'll have to see what they decide in the morning.

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# Tuesday, 17 February 2009

No present for Chaya Devoira, finally on the ward, but not going home yet

4pm, back in the KIC

As previously reported, I went off to Covent Garden, although along a rather meandering route. This was due to the fact that I have an underdeveloped sense-of-direction gland, and regularly get lost when I don't have my Chief Navigator with me. I somehow ended up in Trafalgar Square, but managed to make my way to Covent Garden without too much excess delay.

When I got there, I found that the shop had almost sold out of the little toy I wanted to buy for Chaya Devoira, and the only two they had left appeared to be defective. Ho hum. I wandered around the shop for a bit, partly as I couldn't be bothered walking back empty-handed straight away. I found a nice wind mobile that I thought would make a good present for one of the girls, so I bought three!

When I got back to the hospital, I found that they were still in the ICU. Yolanda had just gone, and the Boss was getting hungry. We kept being told that we were going to the ward very soon, and then that it would be later, and then that it actually be very soon, and so on. We finally made the move around 2pm, and by the time we had got there, settled in, plugged all of Chaya Devoira's wires in and so on, it was about 3pm. That's quite late for lunch, especially when the hospital will be bringing the Boss' supper at about 5pm. Still, we managed to force ourselves.

The doctor came around just before. He is very happy with Chaya Devoira's progress, and gave us an outline of the plan for the next few days. Obviously, everything is all dependent on how she does, as unexpected changes are to be expected :-)

The bottom line is that there is a faint possibility that we will be let out on parole on Thursday, although this seems unlikely. If all goes well, and Chaya Devoira behaves herself, then they will let us out on Friday. Given the (lack of) speed with which hospitals work, this could make it difficult, if not impossible, to get home before Shabbos. We have a few people who we could ask to have us over Shabbos, although it would obviously be much nicer if we could get home. If it didn't work out for Friday, then it would be Sunday.

So, we settle down for a few days on the ward. We are on a different bit of the ward from before, mainly due to the virus that broke out in the bed next to us. That end of the ward is still closed off. We did quite well out of that, as we are now in a bay of four beds instead of six, and only two others of these are occupied. One of those is waiting for the doctor so they can go home. What's even better is that this bay appears to be completely devoid of TVs!!! This is wonderful, as it's so lovely and quiet. We are davenning hard that they don't decide to bring the TVs back :-)

I think that's all there is to report for now. Further blog posts as events warrant.

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# Tuesday, 10 February 2009

Latest Chaya Devoira news

Well, having managed three blog posts that didn't really have anything to do with Chaya Devoira, despite her being mentioned briefly, here is one that's just about her and no-one else.

Despite my best efforts, she remains very difficult to photograph. She actually looks a lot cuter than this photograph would imply, but this is the best I could manage this morning...

Chaya Devoira this morning

For the technically minded, the white tube is a nasogastric feeding tube, which currently has 23 ml/hour of milk flowing through it, up her nose and down into her tummy. The clear tubes supply oxygen to the little device stuck up her nose, and all that tape is to hold it all together!

Anyway, it's not Tuesday, and we aren't in London. For various reasons that I haven't quite clarified, but are immaterial, we didn't go to London yesterday. There was a surgical meeting at the Evelina hospital yesterday, and it seems they decided to stick with the original date of this Friday (13th Feb) for the operation. We are waiting for confirmation from them that they have a bed, and that the hospital here can arrange transportation, but it looks like this is what will happen.

Boruch Hashem, Chaya Devoira is doing a lot better today. She has been off the SiPAP since 7am yesterday morning (it's now 5pm today), and she's coping fine. As a result, they are moving her out of intensive care today, as soon as they can find a bed on another ward. We are actually quite sorry to leave ICU, as the care has been fantastic, but we don't have the choice. Amusingly enough, the nurses there have become very attached to Chaya Devoira, and are quite upset to see her go.

One thing that we are going to miss when she leaves the ICU is a wonderful fibre optic device they have there, which keeps her amused for ages. It is a large bundle of thin tubes, which glow at various points, and change colour in a very mesmerising way. She will sit and gaze at this contentedly for ages, as will we. If anyone fancies buying us one a present, you can buy them here for the bargain price of £559.00! Can you say "e-x-p-e-n-s-i-v-e" boys and girls?

So, if you find yourself with nothing to do on Friday (no idea what time yet), please say some Tehillim for her. Thanks.

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# Wednesday, 04 February 2009

Common cold, so we could be on our way!

The results of the test finally came back, and it looks like the illness was nothing more than a common cold. They are going to take another sample tomorrow and confirm this, but if it is, then they are going to get moving.

Given that tomorrow is Thursday, so the results won't come back until Friday, they will probably keep them in hospital over the weekend, and then take them down to London in an ambulance on Monday, with the intention of operating on Tuesday. This all assumes that the hospital in London has the availability.

I'm terrified and elated all at the same time. It's a weird feeling.

Any Tehillim and davenning that you can do for Chaya Devoira bas Sharon Yehudis would be greatly appreciated.

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# Tuesday, 03 February 2009

Still in ICU, coming off the SiPAP

Chaya Devoira is still in the intensive care unit, but is doing OK. They took her off the SiPAP (machine that pumps pressurised oxygen into her nose) for a few hours this morning, but had to put her back on afterwards. They are going to try again in the morning, and see how she gets on.

The interesting thing is that the doctors are now suggesting that the breathing difficulties might not have been due to a virus or infection, but might have been heart failure :-o

They are also talking about transferring her directly from the hospital to Guys in London, which should speed things up. Trouble is, they still don't know if it's viral or bacterial. It seems that they don't send off samples over the weekend, and Monday's batch are sent at 10pm, so if they take any samples after about 5pm on a Friday, they don't get sent off until Monday night at 10pm. Very efficient!

End of bulletin. Further newsflashes as events warrant. This is Silver of the PSG signing off...

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# Monday, 02 February 2009

In intensive care - but don't worry, it's not that serious!

Chaya Devoira was transferred to the intensive care unit (ICU) this morning. Before you panic, this was only because they didn't have a bed in the high dependency unit (HDU) where she went the last couple of times. Just like before, her breathing became more difficult as the virus/infection set in, and she got to the stage where they wanted to put her on to the SiPAP machine that pumps the oxygen into her at a sufficient pressure to keep her lungs open. They would normally have done this in HDU, but they didn't have any beds, so she went into ICU instead.

Now, I'm pleased to be able to say that I've never had the need to see inside an ICU before. Having seen the HDU, and knowing that ICU is one step up in care from HDU, I imagined that ICU would be a very silent place, where each bed was in its own cubicle, where the nurses crept around and spoke in hushed tones, and the inert patients would lie semi-comatose in their beds, each hooked up to a wealth of serious-looking machines.

Hah, was I ever wrong! Talk about noisy! It was more like an open ward, albeit with rather more security on the door, but with loads of people bustling around. True, there were more machines than I'd seen in one place before, but the majority of these were familiar to me from other wards.

Anyway, right in the middle of it all was Chaya Devoira, with her strange mask on and the SiPAP bubbling away (it removes the moisture from the oxygen before shoving it up her nose, as it wouldn't be too pleasant having a nose full of water!). She was calm and drowsy, although it turned out that this was due to heavy sedation.

All in all, she is doing fine. They slowly reduced the oxygen levels during the day, but she is still on 35% oxygen, which is quite a lot higher than the 21% in normal air. They aren't in a hurry to get her off the SiPAP, as they would prefer to make sure she's really better first. Sounds good to me.

The cardiologist came round while I was there, and we asked him how this would affect her operation. He said that it depends on whether she has a virus or an infection. If it's a virus, then they will want to leave her for a couple of weeks before operating. If it's bacterial, then they can go ahead straight away.

It turns out that Guys hospital, where she is to have the operation, currently has a very short waiting list, and they were going to ring us on Sunday to ask her to take Chaya Devoira down, so they could operate today! As she was admitted on Shabbos, this never happened.

It seems that if she has an infection, they could call us at any time for the operation. This is good, in that she should get seen sooner, but it puts us on alert pretty much the whole time, which is quite a strain. It also brings the whole thing more closely into reality, which had to happen some time or other. Subconsciously, I think we were putting off the thought. Looks like we can't now!

Anyway, no more news for now. IY"H she will be home soon, but we'll see.

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# Sunday, 01 February 2009

Sigh, back in hospital - when we were so close

Due to breathing difficulties, we had to take Chaya Devoira into hospital yesterday (Shabbos). It seems she has yet another virus, so is back on the same routine as before.

Unfortunately, we are still at the difficult stage, where her breathing is very laboured, and she needs high amounts of oxygen pumped into her to keep her levels to a safe point.

Apart form anything else, the problem with all of this is that she was supposed to have her heart operation on the 13th Feb. The cardiology people said that they want a full ten clear days from when she gets over the virus before they will operate. Her previous bouts of these viruses have kept her in hospital for 11 or 12 days, so if this pattern is to be repeated, she would only be coming out of hospital the day we are supposed to go to London to check in.

Oh well, all in its right time I suppose. For now I'm playing Mummy again.

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# Wednesday, 28 January 2009

Chaya Devoira fast asleep in her chair

I managed to catch a picture of Chaya Devoira whilst she was fast asleep, with a full tummy and (presumably) sweet dreams.

As you can see, she has filled out somewhat, and is almost chubby now!

We are still waiting to hear about her operation, but boruch Hashem, things are quiet here, so we aren't complaining.

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# Sunday, 11 January 2009

Welcome home Oxygen Girl!

After an edge-of-the-seat rush that would have been worthy of a good thriller, we managed to get the Boss and Chaya Devoira home 25 minutes before Shabbos. As I mentioned before, we were expecting the home oxygen people to ring on Friday to arrange to come and assess the house. We thought this meant that they would come and install the system on Monday.

At around 11:30am on Friday, I had a telephone call from them, asking if it was OK to come round and install the system! I replied in the affirmative, and within about ten minutes, there was a chap at the door with cylinders, pipes and a machine. He said it would take about 20 minutes to install, and would then be ready for use. Contrary to our previous understanding, the machine turned out to be a fairly modest, portable affair that sits in the corner of the room, extracting oxygen from the air and pumping it down the outlet tube. This connects to the nasal specs, which are small prongs that go up Chaya Devoira's nostrils, and send oxygen to her lungs. This isn't as unpleasant as it sounds, as the prongs are quite short, but it does involve extra sticky tape on her face to hold them in place, as you can see in this picture...

Chaya Devoira having a cuddle with Grandma

If this were to be a long-term situation, they could plumb tubes around the house, so that she could be plugged in in any room. As we are hoping that this will only be for a few weeks, we opted to have a long piece of tube attached to the machine, so that we can trail it around the house to wherever we want to take her. He also gave us a back-up tank, and a couple of portable tanks, so that we can take her out of the house. These came with a fairly smart carry bag that goes on your back.

Excited with the thought of them coming home, I rang the Boss to tell her the good news, and to get her to ask to be discharged. That's where it all went wrong...

They couldn't find the doctor. I mean, this is a hospital, and they couldn't find the doctor! Unfortunately, without a doctor, Chaya Devoira couldn't be discharged. Furthermore, without a doctor, her medicines couldn't be prescribed.

Whilst trying to be as polite as possible, the Boss nagged them every few minutes until they managed to find the doctor. With that hurdle over, we had to sort out the medicines. Apparently, the pharmacy in the hospital has a turnaround time of four hours, putting it well into Shabbos. Thankfully, the nurses were on our case, and they managed to get this sorted out with about an hour to spare.

So, I set the bath going (as neither of us had managed one yet that day), and shot off to the hospital to pick them up. When I got there, I discovered that there was another hitch. For the last week in hospital, Chaya Devoira was on 0.1 litre/minute of oxygen whilst awake, and 0.2 litre/minute whilst asleep. Apparently you sleep more lightly when asleep, which was news to me as I thought you breathed more deeply, but that shows how much I know eh? Anyway, the doctor had prescribed 0.5 litre/minute, which seemed rather high to us. For those of you thinking that too much isn't a problem as long as she gets enough, it seems that too much can be as dangerous as too little, as if she gets too much, her body thinks that she has plenty of air and slows down her breathing, depriving her of nitrogen, the other main gas in the air we breathe. Apparently this is very dangerous.

So they had to find the doctor, and couldn't! Yup, this is the same hospital, and they couldn't find the doctor again - albeit a different doctor. Time was ticking away, and we were getting somewhat nervous. We tried ringing the home oxygen company, but they referred us back to the doctor. Eventually, we persuaded them to let us go home. The nurse was going to continue to try and see what she could find out.

We dashed to the car, and drove home as fast as the traffic and speed limits allowed. We arrived home 25 minutes before Shabbos, both needing baths, with loads of things to sort out before Shabbos. Unfortunately, in the rush at home, the running bath had been forgotten, so we had a small flood in the ground floor of the house!

Amazingly enough, we somehow managed to sort out Chaya Devoira's vast array of medicines and utensils, mop up the flood, bathe, dress and arrange ourselves in time for Shabbos. I'm still not sure how, but we did it.

Shabbos was wonderful. It was so nice having them both home again, even though we had to watch out for the oxygen tube that trailed around the house. We were never in doubt as to where Chaya Devoira was, you just had to follow the tube!

So, if anyone is feeling oxygen-deprived, just pop round to the Smile Gemach and have a whiff - we've got plenty :-)

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# Thursday, 08 January 2009

Ho hum, still in hospital and Simcha mostly trained

Unfortunately, Chaya Devoira is still in hospital, so I haven't a lot to tell (unless you want to hear about the washing, shopping, cleaning, etc). She got over the virus reasonably quickly, and was only needing a small amount of oxygen to keep her breathing. We had high hopes of her coming home last Monday, but it didn't work out.

The frustrating thing is that she is only on the lowest level of oxygen, and should really be able to manage without it, but every time they try to take her off it, her levels plummet.

They are now organising an oxygen system for the house. I thought that this would be as simple as a canister of oxygen that we would put under her cot, but it seems that they don't do that. They have some fancy system that pipes oxygen around the house, so you can take the baby into any room and plug her in. Trouble is, they have to come and assess the house, then come back and install the system before they'll let her home. This all takes several days, during which the Boss is sitting in hospital wishing she were home.

On a brighter note, Simcha's toilet training went pretty well. We have had a few inevitable accidents, but overall she's getting pretty good at it. Another thing thing to add to my CV!

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