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Everytime Lachlan sees his Peadiatrician he seems very withdrawn and I think his doctor may be getting the wrong impression.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.

 

 

Ode to Can

My Dad always said there is no such word as can't. There is only can and not and they are seperate words. He meant it as advice so that you can believe anything is possible. He was obviously ahead of his time as the commonwealth bank has now picked up what he was telling me in primary school. Last night the girls had a school concert and one of Hannah's classmate read this poem. Positive thinking does work.

Ode to Can

There's a four lettered word
As offensive as any
It holds back the few
Puts a stop to the many.
You can't climb that mountain
You can't cross the sea
You can't become anything you want to be.
He can't hit a century
They can't find a cure.
She can't think about leaving
or searching for more.
Because can't is a word with a habit of stopping
The ebb and flow of ideas
It keeps dropping itself where we know
in our hearts it's not needed
And saying "don't go"
when we could have succeeded.
But those four little letters
That end with a T
They can change in an instant
When shortened to three.
We can take off the T
We can do it today
We can move forward not back
We can find our own way.
We can build we can run
We can follow the sun
We can push we can pull
We can say I'm someone
Who refuses to believe
That life can't be better
With the removal of one
Insignificant letter.

Hannah playing clarinet solo last night

and just for laughs our bull decided to eat Lachlan's onesie when it was hanging on the line