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.