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Cooper Milham, Australia, Mosaic Trisomy 13, 3/16/2005
He and his twin brother were sent to the NICU straight away and ironically it was his twin that struggled most initially. Cooper had issues feeding but we just put this down to him being so small.
Working for a Brewery, Hospital next to Brewer and having twins the day before St Pats Day made for a very funny St Pats Day with the visitors getting happier as the day went on. The only people that didn’t find a party in the Maternity ward funny were the nurses!
We spent the first 10 days in the hospital as both boys were in the NICU. Kase came out after 3 days but Cooper continued to have issues feeding. At this stage we had no idea what we were in for.
Cooper’s feeding problems continued and as soon as I stopped breast feeding we noticed he was not getting any food at all. He was in and out of hospital with UTI’s and immediately I knew something was wrong. However I was repeatedly told by the doctors I was just comparing him to his twin………
After 5 months I stormed the hospital and demanded to find out what was wrong. I didn’t care how long it took. By a stroke of luck a young female that was doing a paper on genetics said she wanted to test him (She noticed his low ears and dodgy toes.) She also said it would be about 10 weeks till we got the results.
ARE YOU KIDDING!!!!!!! Do you know how long those weeks were……………………..…..
Anyway the morning of my post preg check up my Doctor phoned to tell me I need to bring Craig (My Partner) I started howling immediately and we arrived at the doctors together. My poor poor doctor (Who we loved to death) was trying to be so strong but ultimately it was hard for all of us. She did say that she had to research Trisomy 13 Mosaic when she recieved the results as she was not familiar with the diagnosis at all. She also said the Peadeatrician (Who had told us the tests were a waste of time as there was clearly nothing wrong with him) advised us not to look at the internet to find out info.
Drove home, plugged in and must have stayed on the internet for at least a week,
I searched and searched but could not find anyone with the same condition. And the more I read the more depressed I became.
It was then we decided we would not look anymore. We would treat him just like his brother and deal with challenges as they arose. I believe this has enabled him to be the independant, confidant little ratbag he is today.
In the Early days we lived in New Zealand and the support was amazing. We had a Pead who then had a team under him. They were wonderful ladies that we adored and could not have coped without. Then every 6 months we would visit Adrian (Pead) and he would go through everything.
The UTI’s continued so he had to have a Uretas Implantation. If anyone has this done and is OK with circumcision(?) do it. We weren’t aware of the issues that could arise years on and with hindsight would have had it all done at the same time. He was 18 months at this stage.
He also had Pneumonia frequently so we decided to move to Australia for the warmer weather.
We were told that everything was reciprocal and everything he received in NZ he would receive in Australia.
Once we moved the whole family we discovered everything was reciprocal EXCEPT DISABILITIES !!! BABOM!!!! OHOH. TOO LATE……………….
Even though life is very challenging, there have been many many very funny stories.
Cooper and his twin were about 8 months old. I was exhausted after being up constantly with both of them. Also in and out of hospital as Cooper had his UTI history and Pneumonia and Kase severe allergies and eczema. I had been up and down all night, had just feed Cooper and put him back down at 4am and the other one started. I belted Craig and said “You have got to get up cause I can’t move.” 10 mins later the baby was still crying. I get up to see what is going on, walk into the lounge and say ‘”WHAT are you doing?” He was also exhausted and had walked into the bedroom picked up Cooper (the baby that was not crying as he had just been fed) and left the screaming one screaming. Now THAT is exhaustion.
Then there was the time when Cooper was constipated. We tried the warm water with brown sugar etc etc. Anyway I took him to the doc and she said ‘You have to put this up his bum and squeeze gel out” ” I HAVE TO WHAT!!!!!” She also said make sure you put the Nappy on once you have done it.
Right so I can do this, I take him home; I try to tell my mum while crying I am laughing so much. “Come on mum I aint doing this on my own”
After 10 mins of laughing hysterically we take a breath and “Lets Do It” I tell her to hold his tiny little legs up while I do this. THEN I realise I am supposed to squeeze 1/3 of the tube out. ITS A WHITE TUBE!!! I CANT SEE into it!!!!! Again hysterical laughing.
Anyway I shove it up, squeeze and say to my mum, let his legs relax. THEN I remember the doctors advice about the nappy. “OMG Mum, pull up his legs so I get the nappy on! As I say this and the legs come up BULLETS !! I kid you not!! BULLETS come flying out like a PEC machine. It was the funniest thing I have ever seen. And man did he smile!
Then there was the time we hopped on the plane with twin 2 yr olds and a 6 yr old. Sitting there full of excitement, me with Cooper on my knee next to a stranger. Taxi down the runway and he drops one. And I mean a BIG SMELLY one. I could NOT sit next to this poor man with the smell so I tell the steward I have to change him. No unfortunately you can’t get up as we are taxiing. I look at Craig, I look at this poor man, wait for the steward to go past and I RAN to the toilet. I could hear running after me but could not stop. I get in toilet, lock it behing me as the plane is shaking down the runway. By 2 I was a gun at quick bum changes however not used to such confined spaces. Just as I reach for the wet wipe with nappy undone, Cooper decides he will help, grabs the nappy and flings it all over the mirror!!!! I don’t remember much after that but that was terrifying enough having to come out, having almost every wet wipe used to clean up. I believe that day I became a contortionist.