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

Christmas wishes

Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference. Robert Frost From the first time I heard this I have always loved this quote. Having a Trisomy Child you are certainly on the road less travelled and sometimes even off that road and on the one person dirt track. However at times it is the best road to be on. Christmas can be a wonderful time but it also can be hard, lonely and seem like you are coping with your own less travelled road. I hope that if that is the case either the joy and peace of Christmas can find you, if only briefly. Or that what ever emotions you may be having you allow yourself to reach an acceptance of them and knowing that at some time they will pass will hold you through this time. We are blessed with our Third Christmas with Lachlan and are convinced he quite simply is the best little boy in the world. Love to you all Rachel, Rick, Hannah, Abby and Lachlan

What can Lachlan do

Lachlan had a big week. He had a check up and a mini overnight "sleep" study. He did well at the sleep study while he was sleeping they almost got him off O2. However at home again while awake he just doesn't seem comfortable without 0.5Litre??

Overall Lachlan is doing well apart from the loss of about a kilo over the last few months which is a lot on a little boy. This has been mainly due to being unwell and vomiting all of his manufactured formula. He is now on a fully blenderised diet and under guidance from his dietitian we are confident he will regain this weight fairly quickly at least we hope so. Everyone please cross fingers.

Rick and I enjoy the blending and so far he is tolerating everything.

Everytime Lachlan sees his Peadiatrician he seems very withdrawn and I think his doctor may be getting the wrong impression. I plan to send some of these photos to him.

smiling eyes

Patting Hannah's cat Dear

Laughing

 

rolling across the mat several times(note O2 cord) to get doll

 

Oh and if someone could turn the Air con on that would be appreciated

 

Whats Happening?

Time does go quickly at times. Lachlan is asleep and I am off work mostly today so I thought I check in and do a new blog post. Surprising almost one month since the last one.

 

Lachlan seems much better than he has been.  He lost a lot of weight with illness and what we finally think may be a milk allergy. Vomiting has stopped and white mucous which at one point was copious from his nose has almost stopped. He is completely off his formula and on a totally blenderised diet now. Rick has really pushed for this and I think it is the right thing for Lachlan. I have just been concerned about the amount of calories he will get this way. I did an excel spreadsheet which always helps me process things better and it looks like we are moving in the right calorie direction.

Recently there have been a few babies that have died in our community. Some passed shortly after birth. Some after a fight with illness. The nature of these babies lives is that their parents know they may not make it or have only a short time with them however they were not loved less nor will they be grieved for less.

Matthew, Angelo and Emma I am sorry you did not spend longer here and am thinking of your family.

Naiyah I will miss you

There is another little girl who has been on my mind who was very sick also. Sending love to your family.

Also very soon I have trisomy mummy friends either approaching the day of their child's passing and/or there child's birthday.

I remember with you
Hazel
Julia
Sebastian
Nalah

Sending you wishes for peace

Waiting Waiting for a Sleep Study

Well it has been a big week. We are almost moved totally back into our home in Conondale. Still have a few bits and pieces back at the Rented home. Wouldn't you know it though Yesterday when we were both able to get it all finished didn't happen for two reasons. One we got a call to come to Brisbane for a consult with the respiratory sleep doctors. They must have had a cancellation so the appointment that we have been waiting for for seven months we took even though it wasn't that convenient. And also this week my car decided it doesn't like to climb hills- not very suitable when you live in the mountains. So I drove Rick's car with Lachlan to Brisbane and he was car less and unable to move the rest of the things.
With great effort comes great reward? well it didn't exactly go like that.
The Doctor looked over Lachlan asked me a few questions and say well he needs a sleep study. Yes I think we are getting to it now. Then she says well I cant book that in maybe in A YEARS TIME.
I just deflated. I just looked at her and said he has been on oxygen for two years now and with no diagnosed reason. She said well it is because he has small lungs and scoliosis. I said but you don't know and I think there may be an obstructive nature.
She then said she would discuss it with her boss when she gets back from leave in one week.
 So we wait