Rebekah Faith - Redefining 'Incompatible With Life': TRY-SO-MY LIFE... HAS MEANING
Thought this was beautiful so sharing
Lachlan was born in 2010. During our pregnancy we were given a 1:2 risk of trisomy 21 ( Down's Syndrome) or trisomy 18 ( Edward's Syndrome). We never confirmed this risk and it was only after birth we found out that Lachlan had trisomy 18. Lachlan continues to defy the odds. This is his journey
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Monday, 18 February 2013
Sunday, 10 February 2013
Additional tips on Blending
Have picked up quite a few tips lately on Blending and am recording them here. Haven't used them all yet but getting that way.
Apple Cider Vinegar can work as a pre digestive when diluted with water 2-3mls with 20mls water and given half an hour before feed. (using this and definitely can see a difference) Actually think this would work for all kids eating via tube with digestive issues, slow motility and vomiting. Vinegar may interact with some meds so check with doctor if concerned.
Paw Paw(papaya) mixed with food can help digestion from the natural enzymes it contains Pineapple also. (started using paw paw)
Freezing meals gets rid of air bubbles in blends and also provides a weeks worth of meals. Thanks to Rick for doing this this week.
Warming food before tubing ( heard from many different sources now doing)
Pre filling syringes before leaving home for school,daycare or trips out.
Would definitely recommend joining FB group Blenderized for Tubies as the parents are a wealth of good information
4/3/13
Adding info
When switching to Blenderised it is normal to expect some weight loss and potentially need to increase the amount of Calories. Lachlan did loose more than he should have however we put this down to increase activity, wakefulness and better digestion. His weight gain since increasing his calories has been good.
We use a plunge/push method with syringe the syringes I got from the hospital do not work as well as the one I asked my Vet if I could try. Other families swear by the squirrel syringes.
Low volume foods to add calories
Sugars :Honey, Rice syrup, Molasses
Oils Olive,coconut,Tahini
Fruits Banana, Avocado
Dairy, sour cream,cream
Non Dairy Coconut cream Coconut milk, Rice milk
His breakfast is now made with soy milk formula at 1 1/2 strength for extra cal
And he is having 4 meals breaky, lunch,afternoon tea and dinner.
Apple Cider Vinegar can work as a pre digestive when diluted with water 2-3mls with 20mls water and given half an hour before feed. (using this and definitely can see a difference) Actually think this would work for all kids eating via tube with digestive issues, slow motility and vomiting. Vinegar may interact with some meds so check with doctor if concerned.
Paw Paw(papaya) mixed with food can help digestion from the natural enzymes it contains Pineapple also. (started using paw paw)
Freezing meals gets rid of air bubbles in blends and also provides a weeks worth of meals. Thanks to Rick for doing this this week.
Warming food before tubing ( heard from many different sources now doing)
Pre filling syringes before leaving home for school,daycare or trips out.
Would definitely recommend joining FB group Blenderized for Tubies as the parents are a wealth of good information
4/3/13
Adding info
When switching to Blenderised it is normal to expect some weight loss and potentially need to increase the amount of Calories. Lachlan did loose more than he should have however we put this down to increase activity, wakefulness and better digestion. His weight gain since increasing his calories has been good.
We use a plunge/push method with syringe the syringes I got from the hospital do not work as well as the one I asked my Vet if I could try. Other families swear by the squirrel syringes.
Low volume foods to add calories
Sugars :Honey, Rice syrup, Molasses
Oils Olive,coconut,Tahini
Fruits Banana, Avocado
Dairy, sour cream,cream
Non Dairy Coconut cream Coconut milk, Rice milk
His breakfast is now made with soy milk formula at 1 1/2 strength for extra cal
And he is having 4 meals breaky, lunch,afternoon tea and dinner.
Friday, 1 February 2013
Blenderising
Lachlan has been on a blenderised diet since November 2012. Many children with trisomy are feed by tubes directly into their stomach. This can be because they can't coordinate swallowing and breathing at the same time, they don't have enough energy to eat to sustain them, there is concerns with aspiration (taking food into the lungs) or a combination of all.
In Lachlan's case all three applied.
To me it makes sense to give real food blended up however it may not be right for everyone and so far the weight gain we are looking for in Lachlan hasn't come. However it is obvoius to us that he has an intolerance to milk and the formula he was on. His nose was constantly mucousy and it immediately happens if we try milk again. I was also really concerned with increasing the volume of formula he was having as he could barely tolerate the mls he was getting and would vomit if given too much. With real food being more calorie dense the same volume can hold more calories,
Real food holds antioxidents, variety and smells and tastes better(even going straight to the stomach). It has the advantage of helping constipation a real issue for people less mobile. It forces you to assess your own calorie and food choices. It can be less expensive and more convenient.
There is growing interest in real food for those with stomach tubes, PEG's or buttons
I am uploading Lachlan's sample meal plan. It is very user friendly any fruit can be subsituted for banana in the snacks. Tuna for salmon, Rice milk or oat for Soy Milk. We do use oil in the blends to bump up the calories without issue. Oil can be an issue if taken into the lungs.
1calorie = 4.2 Kilojoules
Feed back most welcome
In Lachlan's case all three applied.
To me it makes sense to give real food blended up however it may not be right for everyone and so far the weight gain we are looking for in Lachlan hasn't come. However it is obvoius to us that he has an intolerance to milk and the formula he was on. His nose was constantly mucousy and it immediately happens if we try milk again. I was also really concerned with increasing the volume of formula he was having as he could barely tolerate the mls he was getting and would vomit if given too much. With real food being more calorie dense the same volume can hold more calories,
Real food holds antioxidents, variety and smells and tastes better(even going straight to the stomach). It has the advantage of helping constipation a real issue for people less mobile. It forces you to assess your own calorie and food choices. It can be less expensive and more convenient.
There is growing interest in real food for those with stomach tubes, PEG's or buttons
I am uploading Lachlan's sample meal plan. It is very user friendly any fruit can be subsituted for banana in the snacks. Tuna for salmon, Rice milk or oat for Soy Milk. We do use oil in the blends to bump up the calories without issue. Oil can be an issue if taken into the lungs.
Meal
|
Food
|
kJ
|
Total Kj
|
Breakfast Option 1
|
1 weet-bix
|
246
|
680
|
50g yoghurt
|
177
|
||
100ml full cream soy milk
|
260
|
||
Breakfast Option 2
|
60g porridge
|
285
|
685
|
80g stewed fruit
|
140
|
||
100ml full cream soy milk
|
260
|
||
Snack Option 1
|
½ medium banana
|
210
|
815
|
100ml soy milk
|
260
|
||
40g avocado
|
345
|
||
Snack Option 2
|
80g stewed fruit
|
140
|
589
|
10g Tahini
|
272
|
||
50g yoghurt
|
177
|
||
Snack Option 3
|
1 tbs hommus (20g)
|
154
|
624
|
100 ml Full Cream soy milk
|
260
|
||
½ banana
|
210
|
||
Main Meal Option 1
|
30g beef, or chicken or pork etc
|
222
|
687
|
30g potato
|
75
|
||
10ml olive oil
|
370
|
||
Add green, yellow and orange vegetables
|
Not much energy
|
||
Main Meal Option 2
|
30g salmon
|
254
|
731
|
50g pasta
|
292
|
||
5 mL olive oil
|
185
|
||
Add green, yellow and orange vegetables
|
|||
Main Meal Option 3
|
100g Spaghetti Bolognaise
|
548
|
733
|
5mL olive oil
|
185
|
||
Add green, yellow and orange vegetables
|
Feed back most welcome