A lurker's story

[gemprincess]

Hi everyone, I am a long standing lurker. I have been typing out this message over and over but never send so here goes. I am mum to 4 children, 3 gorgeous girls and 1 special boy.Ashton is nearly 9 months now, he was born nearly 6 wks early due to my uterus giving up the ghost(long story).Anyway he spent 1 wk in intensive care and 2 more in special care.During the 2nd wk we were confronted with the news that something was not right. Being asked by drs if we thought he looked odd etc etc.Well at this time they listed his issues as a high palete, small jaw,sunken chest(not suprised since he had rds),periods of colour changes and bradicardias, wide nose,feeding probs and so on. We were advised to do chromosome testing to rule out certain disorders.He also had an exaggerated fontenelle for which he has had 2 brain scans.We spent the first 4 months scared stiff with various so called proffesionals giving their advice. He was put on pepti junior due to lactose intolerance and has meds for reflux too.He went in to hospital a few times at the start and has open access,but is doin so well at this time. As it stands, we have a dietician, ent consultant, pead consultant,salt,community nurse and nursery nurse.We were faced with an uncertain future which looks much brighter now but have no idea what has caused this. We have been teaching him to take pureed food for 3 months as he still has not lost his tongue reflex, we are startin a signing course in jan and have been referred to portage. Sorry this message is all over the place but i still cry when i go over it as i cant help but blame myself. I know that i shoulnt but i guess i have not dealt with the period after his birth yet. Would love to get advice from you lovely ladies and share this with people that understand.

I just want to say hello. I am a bit of a lurker, though posted in my early days. My DD will be 6 months this week and didnt breath at birth she has CP and has alot of problems, however she is doing things they said she would never do and responds well to her therapists, and things we do at home. She is very delayed in so things, is huge fighter and on par with other things, mostly she does it her way though.

I had a similar time where I just kind of ran aground and it was more of a break down than illness and am now being treated for PND, I have only moved to where I am and have had amazing neighbours come out of the would work to support me.
The local dr surgery have also been a huge support, the dr come to visit and check things, my HV is supportive 24/7 I had an awful hospital appointment with NNU outpatients. So bad I had a panic attack in the car park and was so sick. I sent her a text asking her to pop in tomorrow as I had a bad time and she phoned and spend ages talking to me(she doesnt even work on a Monday)

Anyway I did accept I was taking home a non crying, NGT fed, spastic quad that also took fits. She now crys, she can feed orally just not from a bottle, a sippy cup(though not enough in volume) but takes solids. This was advised not poss as she would aspirate. She has not had a single fit and she has managed to roll, it takes some work but she gets there. These things are all huge to me and I feel blessed to have such a wonderful little fighter in my life!

Sorry I have babbled, I always babble thats why I dont post often. If you lived anywhere near me I would be happy to link up and support you in anyway I could xxxxx

they had an inklinkg where to start looking for dd's chromo problems cos she had really high pitched mew-y cry. She does have deletion on 5p (cri du chat syndrome) but that prolly not causing too many probs its the trisomy 14 q that's the real culprit.

My understanding that its a real needle in a haystack thing when looking for chromo problems. They only found dds on microscopic (FISH) analysis but like I said they had inkling where to look. The extra bit of 14 was stuck in place where missing bit of 5 should have been. If that makes any sense. I wouldn't advise reading up on all chromo stuff - think yr wise to leave it a bit. There are as many 'disorders' as there are genes and you could go potty trying to work out possible ones

dd had a massive fontanelle - front and back one merged together - just a big soft head really. I didn't think this was that unusual cos she was my first and I'd always heard that babies had soft heads. I now understand since having ds that they're not generally that soft

will catch up more at weekend cos have to go and pack now xxx