Yay we are home :)

[janmumto5]

Home at last with Kayleigh-May

She doesnt seem in much pain now and is happy cheerful chatty self

She has a bad chest infection but now they have her temp under control and she has stopped de-stating they have allowed her home.

She going on mainly pump feeds as she cant handle the speed it goes in via gravity feeds so 11hrs on pump (385ml a night) at night and two 30min pump feeds of 105ml during the day then 200ml on her breakfast each morning

Am now glad i had it done but Monday night was scary her stats went down to 72% she actually stopped breathing at one point which shit me and the nurse up but it was for literally a second or two then she started making weird gurgling sounds and stats came right back up really scared me they think it a reaction to the morphine as she didnt do it the tuesday night.

Pics of my beautiful girls tube free and of her peg it really quite neat

www.facebook.com/#/album.php?aid=147756&id=524832200

shes so brave and gorgeous how old is she? and so glad shes home!!

my profile show a pic of dd feeding tube but we had mickey straight in

just worked out how much she having doing really well dd still only as 600ml per 24hours

Thanks Trace she is 18mths next week but is tiny for her age lol. I seen a little girl in the hospital had a mini button mcr childrens dont do the mickey button no more and k-m is down for the mini button in 6mths it is so neat and smart was amazing!!

She not started on the above amounts as yet everything coming tomorrow atm she on two hourly 50ml feeds upto 10pm then a 50ml feed at 2am then nowt till breakfast.

Does your dd eat food ? x

jan yes thats how we started chloes 2 half and a tiny 22 lbs and `no dont eat try s but chokes most days , what about your dd?

She safe to eat pureed feeds but it has to be thicker than custard!! We have a videofolcuspy booked for end of this month so they can see if she is safe to eat lumpy/finger foods as she coughs a lot when we give it her atm which is sign she could be aspirating (she a silent aspirator) She doesnt eat much food tbh she weighs 18lbs now...

My ds2 Lewis is nearly 6 and weighs .......27lb's!!! He has growth hormone defiency which means he is tiny height wise to 91cm lol x

we too waiting for videofolcuspy your dd sounds like mine she a silent aspirator too, eyes water, but don't cough goes straight to choke .

wow your ds is tiny!! as your dd got same problem

K- problems so far are...

Cleft on voice box,
Bronchomalcia,
silent aspirator,
She has a slightly leaky valve in her heart and a valve that goes in total direction than it should do but doesnt need surgery as heart is running fine as it is :D,
Hydrocephalis,
plagiocephaly,
global devolpmental delay
Mild low muscle tone (she just learning to pull herself into standing position atm)
When they did her peg they discovered she has quite a large bowel,
She waiting for a kidney scan due to having a severe urine infection few weeks ago,
Our paed thinks she may have a genetic disorder so waiting to see genetics again,
Paed also thinks she could have growth hormone defiency but isnt testing till she is 2.

Whats your dd's diagnosis? x

chloe as seizure type episodes,GGD,apnoea attacks,hyptonia, hypermobile, BPT, feeding issues, fundo, gastronomy and drop attacks, movement disorder protruding tongue, flat head, kidney infection, had the kidney scan though, they think she as a genectic problem they been testing since 12ms nothing yet come back. am sure have missed some thing out.

our poor children do suffer but yet seem to be the most that smile.

we was offered fundo op for k-m but said no it there for us to have done if we decide she does need it after all but im hoping my instinct was right in refusing i forgot to add she got severe reflux to lol..my biggest fear is siezures/fits and i get so paranoid as she does seem to jerk/eyes roll when ill or high temp but docs dont seem concerned so prob me being paranoid mum lol.

K-M has already been tested for the usual fragile-x chromosone 22q etc all came back fine paed is going to ask the genetics to rule out angelmans syndrome as some of her problems are symptons of that.

I agree our special children seem to always smile and be strong in themselves dont they :D

Have you any other children?> i have 4 others my 3 boys all have complex needs to so busy house here lol xx

sorry went to bed, i said your dd sounds like mine our gentic pead is convinced my dd as some thing 15 deletion or imprinting of angels!