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- Weaned & Home - Blog 2010
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Blog 2011
- What to eat...or not to eat, that is the question!
- Drink for us little man!
- I'm doing just fine!
- Dear Tayden...
- Feed me mom!
- What's up with our little man?
- Dearest Tayden
- The Mic key is reinserted
- A major infection
- Another day of no progress
- A bad 2 weeks but much better now!
- A new record!
- Dairy allergy back?
- Slow Steady Progress!
- 3 Already!
- Tay's Timing
- Getting to be a big boy now!
- Green Jelly! Not red!!!!!!
- Assessment went well!
- Tay is the BOMB!
- Holiday Time!
- GRAZ PHOTOS
- Blog 2012
- Blog 2013
- Blog 2015
Background on Tayden's Condition
Tayden 24th September 2008
Tayden was born on the 24th September 2008, weighing in at a healthy 2.78kg even though he decided to enter the world a little early at just over 35wks. He was eager to join mom and dad from day 1, with Brene going into prem labour at 29wk, 32wk and then 35wk. Luckily he was a healthy little guy and he was sent home with an overjoyed mom and dad.
Our little angel - 5 months old
Tayden thrived for the first couple of weeks of his life, except for the constant "moaning" and "groaning" after having a bottle. At 7wk he was changed from normal baby formula to a soy one, which made all the difference - no more moaning! Then, at 11wk he had his first hospital admission, for pneumonia and we were gobsmacked - we had kept him home, away from people with colds, away from "germs" in shopping centres and he was still sick! After 5 days in hospital he returned home, only to be rushed into the ER with a reaction to a milk formula which resulted in him going into Anaphylactic shock and nearly dieing, the night before he was meant to be christened. This led to the diagnosis of his Dairy Allergy which he still has today and a huge cause of concern due to the limitations it places on the types of food that can be offered to him. Tayden may not even eat a biscuit in which milk solids are used.
Various admissions to hospital continued over the next couple of months, but he was still a happy, content baby who simply started refusing a bottle or three every now and again, which then meant he would be admitted for rehydration as well.
Through it all he managed to keep smiling and laughing.
Various admissions to hospital continued over the next couple of months, but he was still a happy, content baby who simply started refusing a bottle or three every now and again, which then meant he would be admitted for rehydration as well.
Through it all he managed to keep smiling and laughing.
Nissen Anti Reflux Operation, CPT, June 2009
In May & June 2009, after more admissions and various tests carried out in Port Elizabeth as Tayden continued to get sick and refuse food and drink therefore starting to fall behind on growth charts and milestones, we were sent to Red X Children's Hospital in Cape Town.
They discovered that Tayden was suffering from GORD (Gastro Oesophageal Reflux Disease) as well as Crycopharyngeal Inco-ordination Syndrome which basically means that Tayden is unable to have a complete swallow and it is unco-ordinated at best, ensuring issues when it comes to swallowing liquids, resulting in aspiration and therefore the many, many admissions for aspiration pneumonia and bronchiolitis over the previous months.
Tayden was sent home with a new diet for his reflux and after 3 days on it, was rushed back to hospital with dehyration and another bout of pneumonia. We were sent back to CPT by our paediatrician, with the surgery to correct the reflux being seen as the only way out. The operation wasn't done initially as we were told that babies had to "earn" this operation and it wasn't done on every Tom, Dick and Harry. Due to Tayden having nice "meaty" thick thighs, he was sent home with the new diet. (sorry angel, you've got your mommy's legs! LOL!) Unfortunately it didnt work out and we had the operation done on 26th June 2009.
They discovered that Tayden was suffering from GORD (Gastro Oesophageal Reflux Disease) as well as Crycopharyngeal Inco-ordination Syndrome which basically means that Tayden is unable to have a complete swallow and it is unco-ordinated at best, ensuring issues when it comes to swallowing liquids, resulting in aspiration and therefore the many, many admissions for aspiration pneumonia and bronchiolitis over the previous months.
Tayden was sent home with a new diet for his reflux and after 3 days on it, was rushed back to hospital with dehyration and another bout of pneumonia. We were sent back to CPT by our paediatrician, with the surgery to correct the reflux being seen as the only way out. The operation wasn't done initially as we were told that babies had to "earn" this operation and it wasn't done on every Tom, Dick and Harry. Due to Tayden having nice "meaty" thick thighs, he was sent home with the new diet. (sorry angel, you've got your mommy's legs! LOL!) Unfortunately it didnt work out and we had the operation done on 26th June 2009.
Feeding tube and Anti Relux Op, CPT, June 2009
At 9 months, weighing just under 7kg, Tayden underwent a Nissen Antireflux operation, where they simultaneously inserted a mic-key (feeding tube) into his tummy to assist him as he was suffering from FTT (failure to thrive) and crossing centiles, never a good sign.
Tayden bore the surgery bravely and after 6 days we flew home to PE with him, hoping to put our problems behind us.
Tayden bore the surgery bravely and after 6 days we flew home to PE with him, hoping to put our problems behind us.
CPT, August 2009, Septacaemia
All went well for the first week or two and Tayden ate well, with us giving him all his liquid through the mic-key as directed by our surgeon. About three weeks after our return, Tayden just stopped eating and since then, has eaten on and off sporadically but with no real pattern and not enough to keep him sustained and growing.
A Gram Negative infection picked up in Cape Town saw Tayden in isolation for a week, numerous infections in the mic-key area as well as Septacemia saw us literally camping out at St Georges Hosp for days at a time, getting more and more despondent. Further trips to Cape Town following to try and ascertain if there was a problem with the mic-key.
A Gram Negative infection picked up in Cape Town saw Tayden in isolation for a week, numerous infections in the mic-key area as well as Septacemia saw us literally camping out at St Georges Hosp for days at a time, getting more and more despondent. Further trips to Cape Town following to try and ascertain if there was a problem with the mic-key.
August 2009, St Georges PE, Feeding Tube Infec
August was a particularly bad month for Tayden, with most of it being spent in both hospitals in PE as well as being flown to Cape Town for tests. He had so many drips in his head in the end as he doesn't drip well that he looked like a patchwork quilt gone wrong. With eight drips going into his head within a period of less than 5 days, he was not happy at all. In the end due to his appearance and to assist in getting new drip sites, we shaved his head and had a little budda baby.
He became badly traumatised and would start crying the moment anyone other than family appeared in his room as he was constantly undergoing tests, having bloods taken, injections being given etc.
He became badly traumatised and would start crying the moment anyone other than family appeared in his room as he was constantly undergoing tests, having bloods taken, injections being given etc.
Tayden turns 1!
September saw Tayden's first birthday come and go, with Tay being the only child at the party not to eat a single thing. We were devastated - we had set out a dairy free party for him to enjoy with his friends and it didnt work, still not eating. We spoke to our Paediatrician and called in the help of Red X again, OT's and speech therapists were consulted but nobody could give us any clue as to why he would no longer eat and drink.
Every test showed normal results with a child that had simply just stopped eating and drinking and was slowly starting to fall behind in his growth charts. By 1 year Tay has just started "bum shuffling" with was no walking in sight, wearing mostly 3-6 and some 6-12 month clothes.
Every test showed normal results with a child that had simply just stopped eating and drinking and was slowly starting to fall behind in his growth charts. By 1 year Tay has just started "bum shuffling" with was no walking in sight, wearing mostly 3-6 and some 6-12 month clothes.
Christmas 2009, St Georges PE
Tayden spent his first "real" Christmas in St George's Hospital with chronic gastro and an infection in his feeding peg. Somehow is seemed fitting - he had been there so many times during the year that is truly was his second home! The hospital were great and provided a lovely meal for their patients - a pity Tayden didnt even try one bite.
April 2010, 19 months
Tayden is now 19 months old and still facing major challenges on a daily basis. He is currently in 6-12 months clothes with anything larger (specifically tops to accommodate the peg) needing major adjustments from granny! He is very short for his age although for his height, we are lucky that he is on track weightwise. It is however, behind what a 19 month old should generally weigh and how tall they should be.
He has developed Feeding Tube Dependency, for which there is no treatment within South Africa.
Feeding tube dependency is defined as a state of an unintended long period of time during which a baby, infant or young child has a feeding tube and thereby avoids learning to eat by natural ways. It will thus show active resistance and refusal behaviour to all attempts of food offering and other well meant techniques aimed at becoming independent of the feeding tube and external nutritional regulation. Most of the little patients affected by this medical condition have been through months of intensive care after birth and many have been operated and needed surgical interventions
His only hope is to enter the treatment program offered in Austria and learn how to eat and drink again.
His lack of eating is compromising his immune system and he gets sick quite easily. He is constantly having to be on antibiotics for infections in and around the feeding tube, having alot of diarrhea and tummy troubles. He has been very slow to walk (17 months) and his speech is also starting to fall behind. He is unable to socialise as much as we would like to due to being ill frequently and is also unable to attend creche due to the feeding issues he has.
Due to his condition, his colon is also not function quite as it should, with peristalsis in some areas not working well. This results in him getting faecal loading as well, a side effect for some peg fed babies, both uncomfortable and very sore.
His body is unable to get all the nutrients he needs and is therefore unable to grow and develop as it should. However, all this CAN change - if he can get to Graz and participate in their programme.
He has developed Feeding Tube Dependency, for which there is no treatment within South Africa.
Feeding tube dependency is defined as a state of an unintended long period of time during which a baby, infant or young child has a feeding tube and thereby avoids learning to eat by natural ways. It will thus show active resistance and refusal behaviour to all attempts of food offering and other well meant techniques aimed at becoming independent of the feeding tube and external nutritional regulation. Most of the little patients affected by this medical condition have been through months of intensive care after birth and many have been operated and needed surgical interventions
His only hope is to enter the treatment program offered in Austria and learn how to eat and drink again.
His lack of eating is compromising his immune system and he gets sick quite easily. He is constantly having to be on antibiotics for infections in and around the feeding tube, having alot of diarrhea and tummy troubles. He has been very slow to walk (17 months) and his speech is also starting to fall behind. He is unable to socialise as much as we would like to due to being ill frequently and is also unable to attend creche due to the feeding issues he has.
Due to his condition, his colon is also not function quite as it should, with peristalsis in some areas not working well. This results in him getting faecal loading as well, a side effect for some peg fed babies, both uncomfortable and very sore.
His body is unable to get all the nutrients he needs and is therefore unable to grow and develop as it should. However, all this CAN change - if he can get to Graz and participate in their programme.
I'm ready for Graz! Can you help me get there?
Now almost 22 months, Tayden is falling more and more behind in his speech and other milestones and it is becoming imperative that we get him eating as soon as possible. We go through days where we will have alot of hope as he seems interested in food and then our hopes are dashed as days go by where he eats very little or nothing at all.
The longer he goes without eating properly, the more dififcult it will be to get him weaned from the tube.
The longer he goes without eating properly, the more dififcult it will be to get him weaned from the tube.