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Everytime Lachlan sees his Peadiatrician he seems very withdrawn and I think his doctor may be getting the wrong impression.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

Lachlan goes to Daycare

Yes that's right Lachlan had a few hours at day care this morning. I am so excited about it that I am posting before photos on Rick camera are here. He did really well and even PAINTED. So exciting.

We hope he can continue to enjoy day care once a week for the extra stimulation it will provide him. Of course if he gets sick that's the end of daycare until he is older.

 

Chase community giving is an American organisation that has money to give to American charities. It is a simple facebook click to help two trisomy charities that could use funds to support research and families when they are needing emotional support. The trisomy community thanks you.

Links below
Hope for Trisomy 13 and 18:
https://apps.facebook.com/chasecommunitygiving/charity/view/ein/20-5808571?ref=b76a3e401d

SOFT - Support Organization for Trisomy:
https://apps.facebook.com/chasecommunitygiving/charity/view/ein/94-2781004?ref=b76a3e401d

When I was a very little baby

My husband Rick recently found these photos of Lachlan from when he was very new. So pleased to find them and share.

Look at me

August 2012 three trips to hospital Virus, then UTI then unknown and the at the last visit to the ER the Peadiatrician acknowlegded that may be something still wasn't quiet right but because his stats were good, UTI not back and he had a couple of feeds in the ER without vomiting if I was comfortable I could take Lachlan home. This is the first time that's happened. Before if we have gone to the ER  we have been admitted. She said we probably know what we are doing taking care of him.

Posting some photos and small video of what Lachlan is up to

Head control and holding on

Thinking(where are you taking me Dad?)

Oh on a teacup ride

Up

and Up

and Over

that was fun let's do it again

 

 

UTI

Monday afternoon Lachlan started shaking and then had a couple of vomits- Trip to ER. As per usual once he arrived at Hospital he looked much better but being Lachlan even though he may not be seen straight away they at least move us out of the waiting room to a bed. Last time it took us nearly eight hours to move from emergency to the ward getting up there at midnight. So this time once I was there I asked for a specium bottle to catch some urine. The last time Lachlan had looked so ill it had been a urinary tract infection (UTI). Took nearly me two hours to catch a sample but yes UTI and up to the ward for a couple of nights. I did the first night and then had to go to work. Rick and I waved to each other  Tuesday morning as we passed on the road as he couldn't leave home until the girls were off to school. It is so nice that Rick is now comfortable to look after Lachlan at home and in the hospital. Came home with Lachlan yesterday afternoon. He seems better but now also has a really snotty nose.  Does he like it being cleaned NO way. So glad I don't have to put the ng tube down any more.

He will be on the antibiotic for a week to clear the UTI and then a new preventative antibiotic to keep the bacteria at bay.

Lachlan Playing with the camera strap while I am writing this.

Two more things to mention. On Tuesday morning the nurse looking after Lachlan hadn't seen him for over eighteen months and had a student nurse working with her. She said to me that she felt she had to give this student a talk to prepare her for Lachlan and how frail and sick he would be but when she actually came in to the room she was blown away with how good he looked and that when he was sick!!

In a previous post I mentioned that I was feeling overwhelmed. I decided to take a facebook break from my Trisomy groups for a while. It has been week now and in a way like having a holiday, needed but boy you miss everyone. I would like to thank those who took time to check if I was ok. It means alot.

How to talk to people about Trisomy 18

This can be very difficult especially with people you just meet or who see Lachlan and want to know more. At this point if Lachlan is in a pram or in the shopping trolley he looks like a 12 month old baby a little small perhaps but they can't see the hypotonia (low muscle tone) and some people he interacts with and smiles at.
 I have handled it in varying different ways. Sometimes I am very vague and just say he has under developed lungs and therefore that's the need for the oxygen.
Most of the time I do mention Trisomy 18. It hard not to be proud of him and tell his story but if you go there you have to be prepared for all the questions that follow. "Will he grow out of it" is probably the one I hear most because most people are kind and want to know that there is some light ahead for you and him. Sometimes I do give too much information and talk about life span. Most people do see that if I tell them the average life span is a couple of weeks and Lachlan is two he is a very unique individual but they assume that he has beaten the odds which he has to an extent but he still wont have a normal lifespan. I told someone the other day that He probably wouldn't live to forty and that was ok because at that point I'll be in my eighties and I don't want to put him in a home. But I was being kind because in the back of my mind I know it is unlikely he will live anywhere close to that time. It is impossible for me to imagine life without him now so I am not going there and at this point I have decided I like living in denial.

Photos

Overwhelming Overwhelmed

I responded to a post and mentioned in it that I feel overwhelmed alot. After writing it I realised that it was an under acknowledged feeling. I certaintly don't feel like it all the time and am managing my days but at times it does get too much. I suppose there is a balance when is it you and all the balls you juggle and then no balance when it shifts to just being all the balls and you have disappeared.

I feel some of my time management is out of whack due to that my current coping strategies do involve my online support group. I do feel a need to spend less time on my Ipad.

This Mother, Wife, Friend, Special needs coordinationer, Employer, Optometrist, Bookkeeper, Household manager needs to take a big breathe in and keep swimming.

Trisomy a positive experience

Feels like it is an exciting time for the trisomy community at present. A study of parent responses to living with there children has been recently published and overwhelmingly the parents reported their children enriching their lives and leading happy lives themselves. This is in contrast to what many people including myself are told during the pregnancy. In my case since I did not confirm with an amino that Lachlan had T18(he received his diagnosis at 12 days old) it was in the form of subtle conversations during my high level ultrasound scans. Comments like "Termination is still possible if you had an amino and found T18" and "You do have other other children you know" and " if we do and amino and find T18 you wont be able to have a c section". However I was never really pushed and I did have a wonderful OB/GYN who respected my decision not to find out but was still preparing me that Lachlan would have some issues. He also is blessed with a wonderful Paediatrician who values him.
If I could go back and advise myself or give the doctors advise on how to approach someone who decides to carry to term (as opposed to deciding on termination) I would have like to be told your journey will be filled with challenges BUT your child will be worth it no matter how short their life may be, you will have the opportunity to met some of the most inspiring people on this journey- the other parents who share this unique journey, you will grow as a person and surprise yourself with your ability to cope and your eyes will be opened to the unique people who live with trisomy and other severe disabilities.
If you are part of the trisomy community you may have already seen these but if not may I recommend Jill's  blog g-giftoflife.blogspot.com titled July 23,2012 we have a voice and http://neonatalresearch.org/2012/07/23/our-children-are-not-a-diagnosis-the-family-experience-of-trisomy-13-and-18

Where you can read of all the people behind these exciting articles.

I truely believe as a society we will become more inclusive and better informed and technology will help us do this as we are able to read each others stories. Life is challenging for us all at times together we can make it easier.

Lachlan turns 2

Today Lachlan is two. We are very proud of him and just love him more every day. The first year of his life we were always on tender hooks expecting him not to make it to his first birthday. When he did it felt like we finally breathed out and he had a huge party to celebrate. This second year feels like the adjustment is being made into what having a child with special needs is more about. We are not having a party this year but have done some special things and made a great cake. Yesterday I had the privilege of talking with two other T18 mums in Australia for the first time on Skype. It was really wonderful and the connections made through the Trisomy community are a continued support to us.

my teddy cake for today

my icecream cake from last night

 thank you Nanna and Pop

"Guess how much I love you"

recordable book. Tastes good

so does my card

in the stander that he got a  a couple of months ago

look how far I have come this is me at my first birthday.

Thank you for reading

Cardiology

Lachlan had a cardilogy check up today. His VSD is still there. It is pretty loud you can hear it easily. Thats a good thing because it means the hole is small. It hasn't changed in size over the last year approximately 2mm. The good news is that his heart is the right size and there is normal pressure in all chambers (no pulmonary hypertension) His cardiologist is happy to review in 2 years!! He was also very happy to see how happy Lachlan was.

One week and one day til TWO!

Hanging out with my Family

 Hanging out with Dad (tastes good this controller)

 With Abby

and Hannah

And mummy tickling me