Where does Lachlan go?

Lachlan 's needs would be classified as high care. He  is high care because intellectually and physically he can't look after himself. However he is very much a part of everyday life and goes where we go. He participates in life. And actually having a non verbal child who never argues about eating his vegies or getting in the car or bedtime in lots of ways makes him both extremely lovable and easy to care for. Enjoy these photos.

Lachlan at The Movies

Lachlan at the  Beach

Lachlan helping with the Shopping

 Lachlan at Anzac Day Parade 2015

It has been ages since I have updated Lachlan blog. He is still a happy little chap coming up to five now. As a family we have had a very busy 12 months with many changes. New house new jobs new schools. I was prompted to write so I could post this link. A Fellow mother with a little girl has written this and hopefully articles like this can help all parents with children facing life limiting conditions.


http://l.facebook.com/l.php?u=http%3A%2F%2Fneonatalresearch.org%2F2015%2F05%2F06%2Fa-parent-writes-in-the-bmj%2F&h=uAQHKlNGe&enc=AZMEfw_PGJ-vexEWYQmEZdXGVILAXJ0XXiSZM6QS3fTdL4bpS3vtDbQDlDQGweY2nQp6K_0GjjCKE1CS6EXiJh3QWk4Dn9qofj9Gwob-JUS19DsrZAqe_p6N9NlB6gn2j0t_4UYaU-ShIiBBRMAygg6U86xUYfgZvYWQ2LulCo9_zw&s=1


http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.bmj.com%2Fcontent%2F350%2Fbmj.h1246%2Frapid-responses&h=PAQEfsiggAQF9lGWobODzY-WKTrKU-k1-Qr7w1HU2lNXkBg&enc=AZPvGzU_jIVjYg33icLkX9meL6nMKkG-jNPPLsyoa1DlGYGcwccr2LmjoJ-oh9eC0XFZzkL8mTbEsXO5UXHyEofpQm2w7LfBW5oWomJQA92G8VK7AFONJM0tm37Fu7lDWf3S8AG-IwRE6PmUhXyCH4_t-3k7LlvcpePpdfSsMHv7JQ&s=1

Things I like

Information on People first Language. A person with disabilities is foremost a person. They should always be described as a person with a condition not as the condition. For example Lachlan has trisomy18. We don't have trisomy children, we have children with a trisomy. Check out this helpful chart:

http://www.inclusionproject.org/nip_userfiles/file/People%20First%20Chart.pdf

Playing

What I like to do and how I move

I love my hanging toys

I am lifting both my legs and bottom into the air when I lay(sometimes it is not good to be to close as I sometimes let one off in this position)

Spending more and more time on my tummy instead of just going for the roll (video about a minute long)

 

Lachlan investigating playdough

Another mum posted a link for playdough. with a really simple recipe. Cornflour and Conditioner. We decided to make it for Lachlan. Smells great. Wish I had this recipe ages ago Link below for recipe. Love the expressions on his Face

 No Flash Photos Mummy!

 This is my Favourite

http://pagingfunmums.com/2013/11/01/soft-as-a-cloud-playdoughusing-only-2-ingredients/

 

Pictures January 2014

Just Chilling

My size pet( new Guinea pig Cookie)

 Sister pic to  the one for March trisomy awareness

https://www.facebook.com/groups/MarchTrisomyAwareness/

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

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

A little bit of Pear

We finally got a food processor for Lachlan. We are going slow and continuing with his formula and supplementing with veges and fruit. He had peas yesterday and some pear today. Here are the photos.

just pear and water

aren't they cute

down the hatch so to speak

playing afterwards

yesterdays peas

prior to my haircut last week

 

Rollercoaster

Yesterday this is a post I wrote on facebook.

Rachel Lachlan

Last night I put Lachlan in a sitting position and he stayed there for a few minutes. Very exciting. Then last night I had a dream he was around four and walking around just a few steps. Obviously this is just a possibility but it was a nice dream to have.until reading some of the things other mums said I wouldn't even have ever had hope for this happening. I remain grateful for whatever movement and thankful.

 

 

A very positive post things were looking good and happy. Today different story. Rick had to take Lachlan to the ER again 4th visit in 6 weeks. Vomiting again with coughing worried about dehydration. Don't think UTI this time. Starting to suspect new formula but we will wait and see.

 

This is the first time Rick has taken Lachlan to the ER and I have stayed home. I am glad he can but it is an anxious time being at home. They didn't get up to the ward until 2.30am.

 

I am going to work today. I am really struggling with having to. When you have a small business there is no sick leave and employees and suppliers have to be paid. At the same time we are struggling with our tenant paying rent haphazardly.

 

Hoping the dip in this rollercoaster doesn't last to long and they can give us answers for Lachlan and he feels better soon.

Update
That was Tuesday. Today is Thursday and guess what Lachlan is back home. I drove down to the hospital yesterday and Rick and Lachlan were packed up ready to come home. He is still very crackly in the chest. This time upper respiratory infection is the reason for the vomits. But 24 hours on the drip helped enormously.

I really want to Thank all the staff at Nambour Hospital whether they see this I won't know but I am sending it out there. Lachlan gets great care and I mean care they really seem to care for him as a person and are also proud of all he has achieved.

Things to come out of this visit. We will return to infratrini as his formula, we will be getting a blender and starting fruit/vegetable feeds There is a new take home piece of equipment that we can do a sleep study at home that we will be able to use in December hopefully.

As far as our tennnt goes I am also putting it out there that they do the right thing and do pay the nearly four weeks behind. They have agreed to move out next Friday so within a month we will be back home home. Ahhh move here we come.