Doing So Well

We’re now at a point where Daisy is constantly getting calories in via her mouth! We’re finding that we have to spoon feed her, but that’s ok, as she will learn the skills that she needs to feed herself in time. If we feed her, it detaches her from the process a little, which means she can tolerate the food going in. Today was chocolate milk which she loves. Asparagus soup, tomato and hotdog soup …..don’t ask!…..ice cream. All loaded with double cream! The more calories we can get her to eat, the less that have to go down the tube.

Daisy definitely has times where she struggles far than others and she gives of signals when she’s had enough rather than telling us that she’s had enough and it’s a matter of getting in tune with those signals so that I don’t end up with the meal splattered all over the kitchen floor.

She is doing so well though!!

Oh and she enjoyed Jaffa cakes today! She likes to disassemble them and eat little bits of the cake or the chocolate or the orange jelly all separately.

 
We also played a cool board game in which you have to try lots of different food.


 

Trying to get a little more in.

Today we decided to focus on volume, trying to get more calories in. I think we were really successful. Daisy was taking in 150 odd calories at most mealtimes. Admittedly they were in the form of cream added to things but it’s a great start! Cream of tomato  soup with added cream, macaroni & cheese with added cream, petit filous….not with added cream, ice cream. Daisy was super keen to have a hot dog/frankfurter, so we used that as our chewing practice, that still seems to allude being swallowed.

   

In some of our spare time today GL, Daisy, Reuben and B went on a bug hunt and collected lots of ‘doodlebugs’ (we English seem to call them woodlice but I think doodlebug is way better) and a ladybug. These mini beasts sat at the table with us and helped egg on Daisy’s eating. 

We also tried a bit of kite flying. 

  Untangling the lines.

I don’t think it was quite windy enough. 

I’m now totally ready for sleep. Yay bedtime!!

A squash and a Squeeze

This is how my kitchen looks……

  
Sometimes there are up to 9 of us in there! It’s intimate! 😀

So today the 3 amigoes arrived before Daisy had even woken up. We left her to sleep until she woke up and came downstairs at 8.40am. She’s not great in the mornings so we left breakfast until 9am. I had previously given Daisy a water bolus at 7.30am for hydration and to help get her appetite going.

Breakfast consisted of drinking a tiny amount of milk off a spoon and making a little bit of orange juice from a fresh orange. Daisy wasn’t really that keen on eating anything. A bit squirrelly as we like to call it. Meaning she was on the edge of her comfort zone. GL said it that it was pretty cool that Daisy could tolerate the milk, as lots of kids with sensory issues like her can’t due to the milk coating the mouth.

Snack time followed suit not too long after breakfast where Daisy was a little more willing to join in. Maybe the fact it was chocolate mousse helped. Man, I’d gobble that stuff up, I brought her the expensive stuff, Tesco Finest! We estimated that she had around 54 calories worth! After snack Daisy received another water bolus.

Lunch was at 12.30 after GL, J, P had been for a walk with, Daisy and Reuben and B in the lead on their bikes. Hot dogs were once again on the menu and the favourite. Daisy enjoyed dipping them in tomato sauce and Mayo. Daisy was taking bites, chewing then spitting it out. She’s not quite ready to swallow those yet! 

Once lunch was done Daisy was tube fed her lunch, 200 calories to keep her going!

I get the feeling Daisy isn’t quite so keen today, maybe she’s a bit tired, or she’s twigged that this is going to go on for a while.

After lunch, everyone had a good break, reading, trampolining or outside playing with stones in the sunshine, yippee for the sunshine!!🌞

At 3pm snack time, we got to scoff some  chocolate with Daisy. Little hollow eggs with mini smarties again. Daisy ate 9 little pieces of chocolate but once again couldn’t cope with the different textures of the mini smarties.  So impressed with her chocolate eating…….maybe she does take after me….. Like Nathan, he had no issues shovelling in chocolate!

For dinner I had cooked pasta, chips & peas. The tomato sauce made an appearance on the table again. Chips dipped in ketchup are good…… Well….. The ketchup is good anyway, the chips were just a vessel. We had a quick cheeto chewing competition before Daisy  was done. 

It’s now 10.30pm and I’m shattered, I think this is more emotionally draining than I realise. All day long it’s , go, go, go. Eating, cheering, coaxing, clearing up, preparing food, cuddles, changing nappies, feeding babies, tube feeds, water feeds, remembering to wash clothes, give attention to everyone so that no one feels left out and then don’t forget to put the clean clothes!! It’s a marvellous journey though and not one that I’d change!!😀

A Few Years Later….. Intensive Wean

So it’s been a long while, Daisy is now 5, Reuben 9 and a newish addition, Nathan is 15 months.

We’ve got to a point in life, where Daisy is agreeable to putting food in her month and my favourite American’s have arrived to do 2 week of intensive weaning to try and get Daisy eating.

So GL, P and J are staying in Somerset traveling 30 minutes south to hang out at our house to do 5 sessions of ‘food play’ for the next 2 weeks.

Daisy is now 100% on Blended Diet, meaning, food that I have made and whizzed up in my fabulous Vitamix rather than a formula that is provided by the NHS. This change in her diet has meant that she is far less sick! A huge thing for us as she was vomiting every day, multiple times a day which seems to be such a common problem for tube fed kids.

Saturday and Sunday last week we started to reduce Daisy’s calorie intake in the hope of making her hungry. So this morning, Monday, we sat down for breakfast at 8am, and encouraged Daisy to eat some Yogurt and Jelly. We calculated that she must have eating around 40 calories.

Then we sat down for a snack at 10.30am, our next door neigbour B come to join in with our meal times and we offered Daisy some cooked pasta, that we had added cream and butter to and blended to a smooth consistency. I’m not sure she was hugely keen on it, but she did swallow some. We’re trying to make all the food we offer her, high in calories.

Lunch was sandwich making, which ended up being a mayo and frankfurter sandwich, a weird combination, but , hey, it worked for Daisy! She told us that she liked the mayo as it tasted salty. Daisy wowed us all then by chewing and actually swallowing, 3 cheetos!! This is such a huge thing, as Daisy has never swallowed anything like this! Makes me hopeful for the next 2 weeks if we can accomplice this in the first day.

3pm snack time was chocolate! Daisy liked to make the smooth chocolate melt in her mouth and then swallow the melty mess. She wasn’t so keen on the mini smarties, we think that the combination of textures is too much for her senses to cope with.

For dinner Daisy enjoyed mashing herself some potato with butter and cream, I think her favourite bit was dipping her finger in the accompanying tomato sauce.

We found that she  benefited after each session with switching off and watching something on Netflix after each ‘meal’ She seemed to need this more so, towards the end of the day.

We’re so proud of how she has done today. I think she is super pleased with herself too.

Tomorrow we do it all again!

Hello 2013!

Ok, so I know this is about a month and a half late….nearly 2 but who’s counting?

Many parents were in England for most of December which was was fabtastic! The kids got to make them read story after story, play this and that and just spend some lovely time together. We had planned on visiting the wonder that is Dartmoor but sadly the weather had other ideas. So we just spent loads of time in front of the fire that Dad make at 4am most mornings. The poor guy’s body didn’t really want to adjust to uk time and he would oftne wake up early each morning…the plus side for us was that the living room was sooooooo lovely and warm each morning.

After Christmas, the big news was that Reuben started school. For a while he had been saying and believing that he would go to school when he was bigger. Not sure where he had this idea from, but hey. So i thought that if he didn’t get his chance to go to school now, it would only be harder and harder as he got older and older and it might be something that he held against me in later life.

So after the lovely Christmas holidays. He started in 2K. He has a lovely teacher who has really helped with the settling in period…although I don’t feel that it is quite over yet. Reuben still feels the need to take favourite cuddly Marlene to school in his rucksack. Even though she did manage to get lost and sparked a huge hunt!

But overall, he says that he has great days at school, even though getting his into his uniform each morning is a chore!

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Since Reubs is starting school and I was in the swing of it, I have signed Daisy up for nursery. We’ve got a few forms to fill out to try and get some funding for a 1-1 for her. She’ll need watching like a hawk as she likes to put inedible objects in to her mouth and also so that she can be tube fed her brekkie. She will start in May, after we have been to visit Mum and Dad in Israel!! Yipeeeeeeee!

 

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Golf

Much to Reuben’s disgust, yesterday morning rather than get straight in for a swim. We had an explore.

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We had fun playing 18 holes of golf, whizzing on zip wires, climbing on wobbly stepping stones and walking down hill and then all the way back again!

Hoping to get on our bikes today……

Center Parcs

We’re having a long weekend away…. At Center Parcs. Not somewhere I’d ever really considered as a place I wanted to holiday. But when we were given some money for a short break. I wanted to go somewhere that Reuben would have loads to do. After reading up about Center Parcs and their amazing swimming pool, I thought it would be ideal.

Now of course, we can’t really get him out of the pool! There is a heated pool outside, with rapids, a cold plunge pool. The pool inside has waves every half hour, lots of slides, a little kids area, whirlpool… What more could a 6 year old want!

For those not in the know, Center Parcs is set in acres of forest. The lodges and villas look our into trees and lakes. Every morning the ducks and squirrels come looking for their breakfast.

This is the view from our living room/ diner/ kitchen.

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Oh The excitment Of My Life………..

One thing I can’t complain about, is the lack of drama in my life.

This week was once again, down to Daisy.

We’d been invited round to watch some fireworks with my sister in law. We had a lovely time, a time to laugh and enjoy good company. The kids had a great time, play fighting, playing hide and seek and causing general mischief.

The time came for us to head home, as I was packing up, I saw Daisy in the room next to the hall way, she started to be a little sick, as she is prone to doing, so I went over to her with a little tub to catch any more that was immanent oh the glamour!). She urged a bit and that when she started to go blue, yep, the child who does not eat anything had swallowed somthing…there was a game nearby that has little balls, the size of marbles….

I picked her up, turned her upside down and  while running shouting for my sister in law thwacked her on the back as hard as I dare, L came and stuck her finger in Daisy’s mouth dislodged whatever it was down there and Daisy returned to the usual pinky hue, gagging away.
My legs were jelly, that was far too close a call…..I spent the night reliving it and being thankful that the episode hadn’t turned out horrendous.

This morning Daisy was little quieter than usual….but not for long and it hasn’t put her off putting things in her mouth…..

By JoJo Posted in Daisy

Singing In The Rain, Just Singing In The Rain

Think it’s been a little wet around here lately!

It’s really not meant to be a pond out of my kitchen window! But we don’t like to let an opportunity like this pass us by.

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So we wade out in our jimmy jams……

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And go for a surf!

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And a boogie board!

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Ahhh….kids in the rain!

Not too much damage and thankfully it didn’t get any closer than 2″ away from the back door.

After a blocked drain was unblocked, it all flooded away
Much to the disappointment of the kids!

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