Friday, June 19, 2009

birthday girl at home for a change

6 weeks at home and trying not to count.Our Lily has just had a birthday at home for a change.Feels weird not going to crumlin hospital to see what the nurses have done for her again.But much happier that she can enjoy all her brother and sisters attention at home.A bit of a manic day but (i) sorry, i mean she had a ball.
Is it just me or does everybody use a childs party to have a few beers to wind down and relax.I suppose over the last 2 years we've wound down after every hospital stay with a glass of wine or two or a beer or three in my case.Im hoping that Lily doesnt keep going in from now on as her mum and dad may have to find their own hospital to dry out in.
only jokin but could easily go down that slippery slope and forget about all the troubles and responsabilities they have.
Anyway,one of these days i'll figure out how to but a picture of little miss lily on my bloggy thing and show her off to the world.(dont tell my other girls)
talk soon

Wednesday, May 13, 2009

day 11 at home

lily,she's doin well and at the moment is going nowhere by the looks of things.Nissins operation seems to be working so far and her oxygen requirement is a little bit less then before the op.God,its great to feel like a normal run of the mill family again.She's gagging after her overnite feeds but im told that will settle and anyway my wife has turned into the best nurse a man could ask for. All meds, all peg changes, all suctioning , all neps actually anything that has to be done with my beautiful Lily Caroline takes care off... in fact,at our last visit to crumlin hospital i was left on my own in a+e while my wife went out for a smoke break.the nurses came around and asked me Lilys date of birth and guess what.... i got it wrong.but i used the excuse that i had 4 kids and just got confused on the d.o.b.. thank god Caroline came back just then as i probally would have been tripped up by their next whats her surname?
Anyway,we're home, life is good again for all and hopefully the summer will be warm with lots of time in the garden with all the kids and maybe a holiday thrown in at some stage.(reccession permitting)

Monday, April 20, 2009


Yes, i shouldnt have blogged about my Lilys last crumlin visit. Holy Mary Mother of god when is this going to end..... 6days , yes 6 days, thats how long we got home before we knew that Miss Lily was for return. So many times ive heard so many stories about little darlings who got through their operations and never looked back.Why Why us, many kids with d.s around the world have the same shit(sorry ,problems) and are still going back and forth to their local hospital to cure their cold , flu , pneumonia ,or whatever other mild dose of sniffils puts them back in the que to get a bed in their local hospital..OK OK so im a bitter man but is there any chance that we could all get a Quick Pass or Gold card or swift pass to get through our A+E and get to our usual wards.6 to 12 hours in Ireland every 2 to 4 weeks just to get a bed for lily in her usual ward.......but at the moment were home.
My wife tells me to stop waffling and get off the computer but this is my little way of letting off steam. Goodbye for now.

Thursday, April 9, 2009

DS and not nintendo

My four year old asked me did i love lily more than her..i thought for a minute and realised that each evening i get home from work i walk in the door and am swamped by my four and seven year old telling me all about their my mind is "how is lily"how did she get on during the day while i was at work...did she puke ? did she need much oxygen?what was her stats like and so on and so on ...meanwhile my other little rascals are at this stage screaming for my attention but as we as parents of our beautiful little d.s children sometimes forget that the rest need 150 % attention as their mummy and daddy are the most important people in their lives and to ignore or be vague with them on first arrival home is devestating to them...from this day on we must all stop ,think and love everything our children say and then ask our serious questions about all our lilys and jacks and toms... my thoughts..

Saturday, April 4, 2009

My first blog!!

hi everybody,
never done this before but i really thought as a father of four children that it was time to move into the blogging era.My wife tells me about all the stories of the other parents who are in similiar situations with their little angels. My little angel is lily. She is the best child that ever came into my life (dont tell the rest of my kids). Anyway,my only issue that i have is that most" super dads" on line have DS kids with no lungs , heart , thyroid problems, hearing problems, sleep apnea, failure to thrive. peg fed etc etc etc... please, please, please when your putting up your fabulous blogs about your amazing children (and i know they are, BUT with no defects) think twice about the families who are up all night checking stats and oxygen levels for their angels who actually dont have time or the strenght at times to type bloggs. Life with DS kids is hard . We had 3 goes at raising children till lily came along. I know how tough it is but it is nothing compared to raising a down syndrome child with major complications!! Crumlin has been a revolving door for us for the last 2 years.
We all learn to live with what life has given us but some get it harder then others. Lets enjoy our children as children and not as special gifts from god as most people say..i hate sleepless nights, i hate my children being shipped off to their nanna's every two to three weeks, i hate my wife being a zombie from her weeks in crumlin, BUT we'd never change Lily.........
The end of this epic is that i respect everyone that is in the same situation as ourselves but nobody ever tells the stories about how bad it can be ... for those of you out there that have just found out that their child is Down Syndrome well i hope and pray that your child is well, no health problems just down syndrome.a little slow but will basically develop like any other child which is every DS parents dream, if not please be reassured that we have lived through heart surgery, tube feeding, home oxygen, etc and would not change a single thing about our Lily!!!