Can he survive on love and yoghurt?
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Topic: Can he survive on love and yoghurt?
Posted By: KiwiL
Subject: Can he survive on love and yoghurt?
Date Posted: 04 November 2009 at 4:40pm
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Hi ladies,
So sorry it's taken so long to do an update. We've been on a 6 week roller coaster and I was waiting for things to settle before I posted. But, silly me, I should know that there's no such thing as smooth sailing. So, while we're in a good phase, I thought I would write. Jackson's stay in hospital was very productive. The first week we were there he had a lot of tests, some old ones repeated, some new ones and some ones we expected to be negative, but they did anyway. He pretty much came back a picture of health! On the 5th day they wanted to do a stool test for malabsorption. The doctor came to me at the end of the day to apologise because the silly nurses had sent it off to be tested for rotavirus by mistake. So, we had to give another one. The following evening (after we'd been discharged to Ronald McDonald House for the weekend) Jackson began vomiting violently in his sleep. All night. So, we were back to hospital the following morning, and not long later that accidental stool test actually came back positive for the rotavirus. Completely not we needed! The following 8 days was utter hell. Jackson vomited and poo'd liquid countless times a day. We soaked towels, filled laundry trolleys, changed sheets all day every day. He was utterly miserable, and just lay in his cot not wanting to be touched or disturbed. He couldn't hold down anything, even pedialyte or water, but was desperately thirsty, so I had to allow him to drink and then wait for it to pour out again. It was heartbreaking. The oncall doctors would visit without reading his notes with NG tubes to insert in him and I had to fight to keep them out. I was scared to leave the room in case I came back and he had a tube!! Finally they agreed to an IV line instead and the tube threat waned. He entered hospital at 8.2kg and, after being fully hydrated once he was better, hit the scales at 7.7kg. After the Rotavirus finished, Jackson developed serum sickness - a whole body, itchy rash - a reaction to the penicillan he had been taking for the cough he'd had for four months. We have a family history of penicillan allergy, so guess he's got it too! Poor boy was miserable all over again! Once he was better, he drank like he had never drank in his whole life. We had one day where he hit 1000mls, the one and only time he's done that ever. Most days he was hitting 900mls, and this was concentrated at 20%. After a few days of just drinking, we started working with the therapy team. They consisted of a child psychologist (NZ's leading expert in psychological feeding issues), an occupational therapist and a play therapist. Through different approaches, we finally got Jackson accepting some yoghurt off a spoon. First it was 5g, then 20g and a week later he was finishing a 125g pottle of yoghurt. But here's the funny thing, he would only eat the yoghurt if we put a crunchy cornflake on top of each bite! Discovered by accident, but made a massive difference to how much he would eat. The cornflake, and the fact that whenever he drinks a bottle he has to rub a sock all over his face, prompted the team to carry out a whole heap of sensory evaluations. The end result was that they believe that Jackson aspirates some of his milk, but not badly and it should get better as he takes more solids (if that ever happens!). He also scored at the extreme end of the sensory evaluations. It means Jackson needs sensory feedback in many situations, particularly eating. Which is why he needs the crunch in his yoghurt and the sock on his face (as bottle drinking doesn't give much stimulation on his own). The flip side is that too much stimulation is likely to freak him out, so we have to find the delicate balance. Kids get better at handling things as time goes on, so we're hoping it's an upward curve for Jackson. We've got lots of strategies to try to get him eating more than just yoghurt. It's quite daunting and involved though. The good thing is that the team think we've done really well to keep Jackson happy in his highchair and not freaked out by food. He's still very interested, but shows visible worry whenever presented with anything new. Since returning from hospital (a month long stay!) Jackson had a terrible week. The old aversions returned with avengeance, he rejected his yoghurt, cried in the high chair, flipped out if we tried to give him a bottle. I was beside myself thinking we'd gone straight back to where we came from. It was a very dark few days. But then Jackson developed spots on his hands, feet and tongue and the doctor diagnosed Hand, Foot and Mouth. No wonder he didn't want to eat!! I really have to learn to chill and go with the flow and trust that the boy knows what he's doing. Since he got better again, we've settled into a not bad eating routine. He's drinking about 600ml per day, still a bit of an effort to get him taking it, but nothing like before. He eats a pottle of high calorie yoghurt at Day Care in the morning, drinks some milk, plays messily with lunch and snacks and often has a little more normal yoghurt for afternoon tea. At dinner time we work on something new every night and then, when he starts crying and reaching out for the fridge, we know it's time to finish up with more yoghurt. So, he's eating about 250g of yoghurt on top of the milk. So far, we have had very little success with anything aside from yoghurt! But, on the positive side, it seems he's getting better at allowing me to put little bits of food in his mouth, sometimes he allows me to touch his teeth and tongue and he is giving kisses again. This is big progress for this little boy who's mouth was so firmly clamped shut for a long time, and who freaked out if we touched it. I try to be patient with the new foods, but I am worried that he will only ever eat yoghurt!! He seems to know that he can hold out for it and he'll get it in the end. At the moment I am more concerned with getting some more weight on him, but I know eventually we'll have to start cutting back the yoghurt and milk in place of real food so he can learn. He's still got big problems with lumps and swallowing finger food. Having said that, I gave him some rather large chunks of chocolate covered marshmallow the other day and he accepted and chewed them up with a big smile on his face, so I am sure he's quite capable if he wants to be. When I look back and see how far we've come in 6 weeks, I am really pleased. But still a little scared because the road is long and I can't really see where it will end. But we're both getting better with coping. And, I can say this with relative certainty, Jackson is not ever going to have a tube again. Even if he does have to survive on love and yoghurt..... ;-) |
Replies:
Posted By: KiwiL
Date Posted: 04 November 2009 at 4:41pm
| Holy moly. No-one's gonna read that novel!!! Sorry guys, my fingers just kept going.... |
Posted By: AandCsmum
Date Posted: 04 November 2009 at 4:48pm
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Wow, that is so interesting & yay for all the huge steps forward...
Love & yogurt  ------------- Kel http://lilypie.com"> 
A = 01.02.04 & C = 16.01.09 & G = 30.03.12 |
Posted By: Freesia
Date Posted: 04 November 2009 at 4:52pm
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I'm so glad that you have some answers now, and even if it means a lot of work, at least you know the direction you're going in and can keep working on it. He sounds like he's made huge steps forward already and that must be so reassuring.
Poor little guy catching both rotovirus and HF&M is such quick succession. -------------  
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Posted By: FreeSpirit
Date Posted: 04 November 2009 at 4:53pm
Wow Laurie, you had such a hard time, but what a great outcome! I have to point out that he's surviving on milk, yoghurt and cornflakes  I'm so happy that the trip to starship was worthwhile, and good on you for sticking to your guns when Jackson was sick - the last thing you needed was a NG tube just when you were making progress. ------------- http://www.babysfirstsite.com"> 
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Posted By: lilfatty
Date Posted: 04 November 2009 at 5:19pm
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I read every word of your novella
Im so glad that you are making some progress (although after a rollercoaster ride up here in the big smoke!). Just remember baby steps .. you will get there in the end  ------------- Mummy to Issy (3) and Elias (18 months) I did it .. 41 kgs gone! From flab to fab in under a year  http://www.femininefitness.co.nz/category/blog - LFs weight blog
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Posted By: RunningT
Date Posted: 04 November 2009 at 5:27pm
It is really interesting and despite the humps along the way it is good you are getting some answers. Love and yoghurt :-) ------------- 
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kiwilaurie wrote:Posted By: NikkiB
Date Posted: 04 November 2009 at 5:27pm
Wow, very interesting about the sensory feedback. I've had to work with my son on his gag reflex that was at his lips  (As you may or may not remember, I've been following your story because my son is also tube feed.)
I'm so pleased that your trip to Starship was a succesful one. Sorry to hear that Jackson became so ill thought. Just remember that all these baby steps are leading in the right direction and one day you'll look back and think 'wow, we've come a long way'. All the best to big and brighter things with Jackson's eating. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: kiwisj
Date Posted: 04 November 2009 at 5:41pm
I read it Laurie I love reading your updates. Jackson is a and you are an awesome Mum. Thanks for keeping us posted.
 ------------- SJ Callum - Dec 2008 Daniel - Oct 2010 |
Posted By: Bizzy
Date Posted: 04 November 2009 at 5:49pm
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sounds like you have both made some great progress! way to go!
------------- http://www.myfitnesspal.com/weight-loss-ticker"> 
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Posted By: Chickoin
Date Posted: 04 November 2009 at 6:00pm
Ditto -------------   
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Posted By: blondy
Date Posted: 04 November 2009 at 6:01pm
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I've been wondering how you are all doing. So glad to hear some progress has been made, even though it's no doubt a long road ahead You're doing a great job. -------------  
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Posted By: Emmi_
Date Posted: 04 November 2009 at 7:58pm
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Long time lurker and first time poster.. Just wanted to say that it is awesome, and your getting there!! Your doing a fantastic job with wee Jackson!!
And I thought it was really interesting with the sensory thing too! I hope that now you have some small insight it helps a lot!! Keep it up hun! ------------- 
+1 May 09 Angel 
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Posted By: WestiesGirl
Date Posted: 04 November 2009 at 8:09pm
I read it all too  I also love hearing how things are going too. Great to hear Jackson is making good progress, even if it is taking time. Your doing an amazing job ------------- Our Angel July 08 Gone but not forgotten
And to complete our family, our princess has arrived 
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Posted By: tishy
Date Posted: 04 November 2009 at 8:17pm
What she said
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Posted By: Henna79
Date Posted: 04 November 2009 at 8:26pm
| glad you got some answers albeit ones that aren't so easy and gonna take a lot of work for you all... so glad you are all back home together (and getting ready to move into your new house yay!!). |
Posted By: LeahandJoel
Date Posted: 04 November 2009 at 8:35pm
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So happy to read all Laurie... Yay for yogurt and cornflakes!! . -------------  
 
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Posted By: peanut butter
Date Posted: 04 November 2009 at 8:44pm
| I read it all too....very interesting...and very hard. Well done you...you are doing a great job...and he is cute as a button! |
Posted By: mummyofprinces
Date Posted: 04 November 2009 at 8:50pm
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Am I the only person who got teary reading that!
Fantastic news Laurie, aside from rotovirus, penicillian allergy and HFM!!!!!! You are doing an amazing job!!!!!!! Great big hooray for kisses
Oh and I love Jacksons beanie, I want one for Jake. -------------   
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Posted By: kiwisj
Date Posted: 04 November 2009 at 8:52pm
Nope ------------- SJ Callum - Dec 2008 Daniel - Oct 2010 |
Posted By: palomino
Date Posted: 04 November 2009 at 8:56pm
| *hugs* you are doing so well! |
Posted By: RoSee
Date Posted: 04 November 2009 at 8:57pm
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I'm the same as Emmi_ ... first time posting
I just have to say wow what an amazing mum you are Jackson is so very lucky to have you I really hope things continue to progress for you and Jackson, even if it's just baby steps ------------- http://lilypie.com"> 
http://lilypie.com"> 
September '11
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Posted By: cuppatea
Date Posted: 04 November 2009 at 9:23pm
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I read it all too and got teary
It is great progress you should be very proud, of yourself and of your wee boy.------------- 
 
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Posted By: kakapo
Date Posted: 04 November 2009 at 10:23pm
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Yep, I read every word and shed a few tears too. You're the type of Mum we all look up to and admire Laurie, and you guys have come a long way in just 6 weeks Oh and btw, Jimmy has survived on canned Creamy Rice for dinner on waaaaaay too many occassions |
- not sure of its nutritional benefits, but please tell Jackson that Jimmy recommends it 
.Posted By: Shezamumof3
Date Posted: 04 November 2009 at 10:56pm
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Oh Laurie ***hugs***, you have had such a rough time, and poor wee Jackson, just one thing after another, but Im so pelased that things are looking up for you guys! ------------- |
Posted By: clover
Date Posted: 05 November 2009 at 8:17am
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I read the whole thing too, infact when I saw you had posted an update it was the first thing I went to. I'm so glad that Jackson is doing well and that the trip to Starship started to give you some answers.
------------- http://lilypie.com"> 
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Posted By: lovingmummyhood
Date Posted: 05 November 2009 at 8:39am
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I read it all too (of course) Great that you have made so much progress, even with rotovirus and H, F and M. You guys have had so much to deal with and you are doing a great job!! ------------- http://lilypie.com">  http://lilypie.com">
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Posted By: flakesitchyfeet
Date Posted: 05 November 2009 at 10:23am
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Another reader and quiet wee follower here, I not only find it fascinating, but I am too in admiration of your incredible strength, determination and love for Jackson
-------------  http://lilypie.com"> |
Posted By: Babe
Date Posted: 05 November 2009 at 11:06am
Double Ditto!!! You guys are doing so well!!!! -------------   
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Posted By: T_Rex
Date Posted: 05 November 2009 at 11:46am
Me too. You might not feel like it at the moment, but I think posts like this become an inspiration to so many mothers struggling with all kinds of things. And hey, he's been surviving on just love for long enough, I'm sure he'll survive on love AND yoghurt ------------- http://lilypie.com">  http://lilypie.com">
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Posted By: lemongirl
Date Posted: 05 November 2009 at 12:04pm
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Wow you are frickin awesome.
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Posted By: sweetpea
Date Posted: 05 November 2009 at 2:27pm
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Great to hear of some progress and some answers at last. Keep going you will get there its just going to be a matter of time. Just keep doing what you are doing. ------------- http://daisypath.com"> 
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Posted By: Twinboys2b
Date Posted: 05 November 2009 at 3:30pm
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Laurie, what an unbelievable journey you're on. You're doing so well and I'm glad Jackson's such a fighter as are you. I'm glad he's 'healthy' in medical terms (iykwim) and you have some expert advice to be able able to use to help him on the right track. You didn't say how you are but I hope you are keeping positive, it sounds like it. I can't comprehend what you're going through. Bug hugs and thanks for letting us know how you're all going. ------------- 3yr old gorgeous ID twin boys. |
Posted By: Rachael21
Date Posted: 05 November 2009 at 4:24pm
Me too, you really are amazing
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Posted By: KiwiL
Date Posted: 05 November 2009 at 6:29pm
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Aw, guys. Thanks for all the lovely comments. It's huge knowing I have a cheer squad on here!!
Honestly, I don't feel like an inspiration. I have struggled so badly at times and behaved badly too! But if even one struggling mum were to gain inspiration from our story I would be very proud indeed.
Tonight he ate about 6 bites from a spoon of stage 3 chicken and mango. He's having real problems chewing it up and swallowing (a lot harder than the yoghurt) but tonight he only pulled a little from his mouth - maybe one bite's worth from the 6. Yesterday it was four bites, so it feels like we're progressing. YAY! He's also trying things with a wide mouth, allowing the spoon in, where in the past he used to only open his mouth the teeniest slit and then recoil when food touched his lips. I feel so good! It really feels like every day the oral aversion becomes a tiny bit less. He's even willingly taking pamol from a syringe now. In the past we've basically had to sit on him and force it into his mouth. Horrid. Maybe he'll even eat cake on his 2nd birthday!! |
Posted By: FreeSpirit
Date Posted: 05 November 2009 at 6:49pm
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YAY Jackson, what a for eating mango chicken!
Laurie, I think with all the stress you've been under, you're allowed to behave badly sometimes. ------------- http://www.babysfirstsite.com">
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Posted By: Shezamumof3
Date Posted: 05 November 2009 at 7:26pm
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yay jackson!!!! ------------- |
Posted By: LeahandJoel
Date Posted: 05 November 2009 at 8:08pm
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Go Jackson...you are a -------------
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Posted By: rachndean
Date Posted: 05 November 2009 at 9:10pm
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Gosh both DH and I have tears in our eyes after reading your post Laurie!
You are an amazing mum, Jackson is a very lucky little boy!!! Thanks heaps for keeping us all posted
GO JACKSON!!! ------------- http://lilypie.com">  
DD Savannah 18.01.04 DS Austin 04.09.08 |
Posted By: mummyofprinces
Date Posted: 05 November 2009 at 9:30pm
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Oh Laurie, what a beautiful goal for Jackson. I hope he does eat cake on his birthday -------------
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Posted By: WestiesGirl
Date Posted: 06 November 2009 at 1:03am
Ditto that!!!
Yay go Jackson ------------- Our Angel July 08 Gone but not forgotten
And to complete our family, our princess has arrived
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