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.