Christmas

Hard to believe but this is my forth Christmas. Merry Christmas everyone.

Lachlan is Three

Wow how did that happen. Three years we are very thankful for. happy Birthday Lachlan

Sleeping in his present a blow up ball pit

blended birthday cake

Family Holiday

Last Month we had the opportunity to have a family holiday for three weeks. We were granted a week away in Forster NSW at Ronald McDonald holiday accommodation. The accommodation is provided at no cost to families that live with a child with a life limiting condition. We appreciated this opportunity so much and decided since the trip to Forster would be a round drive of 1600kms that we would add an extra 2 weeks on and an extra 3400kms so we could see friends family and snow.
Our concerns were that Lachlan may get sick or not handle the amount of driving. However he did brilliantly and we once again realise you must take all opportunities when they are there.
Hope you enjoy the photos

Outside Cabin at Forster

not looking at road anymore

rugged up

for the SNOW!!

Countdown is on to our big holiday

That's right we are heading on the obligatory Aussie driving holiday with the kids- 3 weeks over 4000kms. Leaving next Monday.

 It was sparked as an idea when after applying to stay at Ronald McDonald house in Forster NSW we were accepted. We are really grateful for this chance to stay accommodation cost free for a week. None of have visited this area of Australia on the central coast of NSW before and we are looking forward to family time relaxing in what we are told is a beautiful part of Australia.

Forster is about 800kms from where we live so after talking about it we felt it was an opportunity to carry on during the winter school holidays. and we are taking Lachlan and his sisters to the snow!!
We will have four days in the alpine town of Jindabyne.

And then since it is only another 6hours to Melbourne we will stay with  long time family friends for a few nights before heading back home this time through central NSW again to visit family.

 We have not had a family holiday of more than a week since 2008 and apart from time off for leave due to babies Rick and I haven't had more than two weeks away from work in over 15 years. Seems incredible when it is written down.

Hope to have lots of wonderful memories and great picks of Lachlan doing lots of stuff he never was supposed to.

Lachlan keys in hand is ready to get going!

I Love to Chew

Daddy's pants

My sister's pink chef hat

bunny ears(if you put me in it I'll eat it)

a bit hard to chew I'll give it a go though

 

Rebekah Faith - Redefining 'Incompatible With Life': TRY-SO-MY LIFE... HAS MEANING

Rebekah Faith - Redefining 'Incompatible With Life': TRY-SO-MY LIFE... HAS MEANING

Thought this was beautiful so sharing

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.

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.

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

 

 

1calorie = 4.2 Kilojoules

Feed back most welcome