Ryan's Birth

The labour with ryan was tramatic. to say the least, I had to have my waters broke, nothing unusual there, but the midwife had 3 attempts to brake my waters, on the 3rd attempt she wondered why it was so tough.... It turned out she was gauging his head with the tool she was using and cut his head, because of this, he had a poo, and so i had meconium in my womb.. He was ready to come, and i was fully dilated, but yet, he was left in meconium for 4 hours......
When he did come out, he had a cut on his head, and i was so exusted. We knew there was a problem right then, as he didnt feed well at all, but considering he was in meconium all that time he was doing incredibly well, obviously he was on meconium watch, every 3 hours, but seemed fine.
We did manage to get him to feed on the hospital teets, and there ready made milk, he loved it so much, so we had to keep getting this from the hospital for months. Then because they wouldn't give him anymore I had to ween him of them onto the normal cartoon milk ,only for Ryan to refuse feeds, and six months on,he still wont take to it or any other bottle. Furthermore, we noticed that from birth till now he still sound's like a cat when he cry's, further investigations maybe needed for this!!!!!

ryan when he had his mri scan

when ryan had to go into hospital for his mri scan it wasnt nice at all,because of how irritable and fussy he is and because he doesnt sleep they had to sedate him but not just once but twice,yes thats right he had to have his sedation topped up cause they have to be completly still.they put the needle in his head so they could administer the sedation through that as that was the only place they could get a vain.oh it was so sad he hass his little telly tubbie hat on

ryans brothers

Owen-Jay

Keanu-Lee

Ryan has 2 older brothers...
Keanu-Lee he is nearly 2 years old, he is fine just a typical nearly 2 year old.
Owen-Jay has (trisomy 21 mosaic down syndrome), he has an extra 21 chromosome,you could say Owen has ryan's missing chromosone lol. Owen is a delight he is nearly 8 but going on 28.

ryans op comming up

ryan is going in for his peg operation soon on the 7th of december hopefully this will help ryan a great deal and hopefully he wont be so irritable.Updates to follow with this

What is wrong with Ryan?

That is the question we get asked a lot....

Ryan has "partial Mosaic monosomy 21" which means hes missing one of his 21st chromosomes. Now, this genetically is extremely rare, we've been told, hes definitely the only one in the UK with this type of genetic problem, possibly the only one in the world as well.
This affects Ryan in a lot of ways, he cannot and doesn't know how to feed from a bottle let alone take any solids, so he has been tube fed via nasal gastric tube since he was newborn. He has increased muscle tone in his arms and legs, Ryan's genetic condition can also make him function as a Cerebral Palsy. He cannot and doesn't no how to sleep, only with calpol, He has seen a neurologist who has said he does have some serious neurological problems, his connections in his brain are not firing properly. Ryan is also on medication for reflux, and has been since birth.
A trait of the monosomy that is very important to remember, is what may work one week for Ryan may not work the next, so we have to keep very on top of things.
Ryan is trying so hard with everything, hes doing all he can to sit up and crawl, but with no success yet, Ryan is so beautiful considering hes suppose to be dis-morphic, he is our precious angel and he is doing well at the moment considering.