DS Ireland Grandparents Day

Morning! Found about this from the most excellent Nan P, apologies for delay in posting, have been doing the Xmas thing :)

DOWN SYNDROME IRELAND GRANDPARENTS INFORMATION DAY

The Trinity Room.
The Gresham Hotel,
O’Connell St.,
Dublin 1.

on 14th January 2009 - 10.30am – 3.30pm

Facilitated by:

May Gannon - Counsellor.
Joan Murphy - Clinical Co-ordinator.
Grainne Murphy - Independence Officer.
Pascale Claes - Grandmother.

ALL GRANDPARENTS WHO HAVE A GRANDCHILD WITH DOWN SYNDROME ARE WELCOME.

Please phone the National Office on 01 4266500 or email info@downsyndrome.ie to confirm your place.

Santa : Episode II

Happy Christmas Everyone!

We had a lovely morning in Kildarton with all Ava's schoolfriends and their parents. Santa was there as you can see and once again Ava met the man himself for a chat and a cuddle.

Again Kildarton staff are so so nice and it was a great event. I realised this morning how many people we now know in this 'elite club' we are in. My parents and my sisters family were there too which made it extra special, they have been such a great help since madam was born especially my sister Carol who is a true legend.

The best part of being at these mornings is to see how older kids are coming along and actually interacting with them and watching them flying about. I love it!

Also we got Ava a Nuk from the DS Ireland website and as she is teething she loves it! She has been a bit cranky of late with the ol teething but she loves this.

Anyway have a superb Xmas and here is to 2009! So far so good for our family and hope you all have a great one.

PS Can we take a moment to acknowledge one of my fave posts ever! Dr Cox!

Laughing

Shameless video of Ava laughing!

DS Dublin Xmas Party 2008

We had a lovely time today at the DS Dublin Xmas Party 2008. It was in the Garda Club on Harrington Road and was very well organised.

Ava put on her special Xmas outfit and her red shiny shoes. Also she had her new Xara winter coat (not pictured) she got from her Grandma.

When we got there we met loads of folk we knew including all the gang from the DS forum weekly mums meeting and also some Kildarton folk. They had a magician and elf DJ and of course the man himself...Santa!

Ava met Santa for the first time and got a selection box present which Duffo and I are going to look after.

A great day and well done to the organisers like Debbie who I met for the first time. I plan to make the next DS Dublin meeting and get more involved.

Monday Musings for Dec 1st

Irelaaaaand! Ava Bear watched the rugby but thought Ireland were poor and lacked passion. Duffo got her the jersey which looks fab I am sure you will agree. She might get a game yet.

So it is a very cold Dec 1st and I am just back from a failed attempt to go to my first DS Dublin meeting! I was there at the right time at the right place but nobody showed? Tis a mystery no doubt. Anyway we shall see what went wrong in the coming days (I hope).

Somehow managed to miss The Muse blog and so have belatedly added it to my list and have been reading through it. Sorry :(

This here is Ava's winter gear. She is doing great and is 8 months old this week. Ava had her developmental check up and did great.

Recently we noticed her eye was turning slightly inward and were concerned. We have obv have checked this with the folk who know and it is nothing to worry about as apparently they grow out of it...phew!

Anyway all good here, looking forward to Ava's first Xmas!

BBC Radio 4 Tonight 8pm

Morning! Woke up this morning and saw the end of an item about DS on the BBC Breakfast program.

Missed the actual segment itself but they were seemingly doing a promo about a radio show tonight on BBC Radio 4 (you can listen here http://www.bbc.co.uk/iplayer/radio/bbc_radio_four/)

Born with Down's-Born with Down's
8:00 pm - 8:30 pm "Felicity Finch finds out why more babies are being born with Down's syndrome."

If it is any good I will try and podcast it here for folk to listen at leisure.

Updated http://www.bbc.co.uk/iplayer/console/b00fkx0m

Tis the Season...

Happy Monday!

Xmas is coming, why not go here and buy some Down Syndrome Ireland Xmas cards?

I ordered yesterday and they have already shipped them.

Go on you know you want to....

Mums get together, eat cakes and stuff...

Ok so this is really just another shameless 'photo' post (kind of) :)

My wife, Duffo, is part of a group that meet weekly in each others houses with the kids. They met and arranged it through the www.downsyndrome.ie forums which shows what a valuable resource they are.

It is really nice to get the kids together and I just love this photo of Ava (bear), Noah and Cathal. Photo by Cathals Mum.

Also I wanna shamlessly paste a post duffo found on Cathals Big Adventure which I thought was super cool. This was a comment in reply to a photo of the 'Gang' at the last weekly meeting.

The picture of "the gang" brings me back to 1982, when my brother was two. Services and networks were poor so my Mum contacted new parents of children with Downs Syndrome and they came to our house for advice and a chat. On many occasions I came home to find a little "gang" in our sitting room with their anxious parents.
My brother is now 28 and our little visitors of 1982 and beyond are his best friends.
Keep up the great work

Also I notice Cathal has an Xbox 360 and likes comics....most excellent....

Ava's Ticker Checkup Part II (Back to Crumlin)

Ok so back in May we had been out to Crumlin to see Dr Franklin. Today was our follow up and although it was somewhat routine there was always that worry in the back of our mind.

Anyway the good news was that there is now only one very small hole left and it is so tiny there is nothing to worry about. Better again is it will almost certainly close up.

Once again Dr Franklin was super nice. The HSE should really consider moving this leading cardiologist out of her prefab portacabin with inadequate heating some day soon. Oh and the car parking still sucks bigtime. I cant imagine how frustrating this is if you were going there regularly for something serious.

And finally myself and the lovely Duffo fully realise how lucky we are that Ava has dodged this particular bullet. If she did have a problem however I would have total confidence in Dr Franklin.

That's My Daughter in the Water

So as previously documented Ava has been swimming already with her Mum and Dad. Well this morning was my first "Dad's Morning" at Carmona House with Ava. We all took to the pool with our little ones and did the usual songs. The songs were however accompanied by lots of movement in the water and Ava loved it. The facilities and staff there are really top class.

Afterwards the fathers got together for coffee in another part of Carmona. We briefly discussed DS related matters and then moved on to Top Gear, the economy and of course property prices.

It is interesting to go to these events as it is very easy to sit at home with Ava and forget the larger context. I have to admit trips to Carmona do make me think about the long term. I do love to see other kids who are two and stuff and try and predict what Ava will be like. Anyway a great day!

Ava = Ladybug!

Happy Halloween.

Yes I should be posting about the budget, u-turns and the like but unfortunately work has just been crazy :(

In the meantime here is a shameless Halloween Photo of Ava Bear as a ladybug! They have whiskers now apparently :)

Mobile Phone Video

Great mobile phone video from Duffo

Real Life....

Ok so I have been terrible with updating the blog but hey life is busy (in anyways)!

Ava (or "Ava Bear" as we call her) is now 7 months old! All I can say that she is doing just great. She could do with rockin out a bit of the old "Da Da" speak and a repeat performance of her first ever rollover (or "roly poly") would be welcomed but we aint pushy!

Every day she is more of a little girl and me and the Duffo are just really enjoying life with her. You really havent lived until you go in to pick her up from her cot and she smiles up at you, it is quite literally like Xmas every day in that regard (seriously).

Oh and to that one person (who shall remain nameless) who was very critical of parents being 'like all positive' when their DS kids are babies I pity you. You have to enjoy every moment and we will continue to do so. Anyway she is our daughter and we dont over focus on the DS to be honest and so far thats working out :)

Oh and the photo is off a superb pair of Vans shoes from our great friends Martin and Audrey (who have the cutest daughter Kalia). They are just....so....cool non?

Shout! Text "Shout" to 57502!

Ok so I have been major busy recently and therefore the blog has not been updated much. I intend to do more updates this week!

Anyway Nan P quite rightly pointed out that I should highlight the SHOUT programme! Text "SHOUT" TO 57502. It costs only €2. The Shout Programme" is designed to train and develop adults with Down syndrome to speak for themselves.

An Interesting Article in Yesterdays Times

This caught my attention in yesterdays Irish Times 07/10/08. That said while it is of interest now I am the proud father of a child with DS my (personal) feelings on testing are somewhat mixed.

Safer Prenatal Blood Test found for Down Syndrome

WASHINGTON – A prenatal blood test can be used to determine if an unborn baby has Down syndrome without the small risk to the foetus posed by invasive testing methods such as amniocentesis, US researchers said yesterday.

Researchers led by Stephen Quake of Stanford University in California created a way to look for the extra chromosomes that cause Down syndrome and similar birth detects in the tiny amounts of foetal DNA that circulate in the mother’s blood.

The test, which requires a small blood sample from the mother, is safer than amniocentesis, in which a needle is inserted into the uterus, and can be done earlier in a pregnancy.

Down syndrome, which causes mental retardation and other problems, is caused when a child has three copies instead of the normal two of chromosome 21. The test also detects other chromosomal conditions such as Edward syndrome, which kills half of babies in the first week of life and Patau syndrome, which kills more than 80 per cent of children in infancy.

Mr Quake’s team demonstrated the accuracy of the new genetic test in a small study involving 18 women. It accurately identified the nine women with a Down syndrome pregnancy and three others with foetuses with different chromosomal disorders, according to the journal Proceedings of the National Academy of Sciences.

“It’s the first universal, noninvasive test for Downs syndrome. So this should be the first step in putting an end to invasive testing procedures like amniocentesis and chorionic villus sampling, Mr Quake said. – (Reuters)

© 2008 The Irish Times

Back from Holidays!

Back from a fab holiday in Portugal (specifically here, would highly recommend it). Ava was good as gold on the plane on the way to Portugal and slept most of the way back too!

Airports were semi-interesting as it was so busy both ways and you do get the odd funny look from people but sure what can you do? Certainly doesn't bother me or Duffo (super Mom) one little bit.



Ava at the Villa pool with her Dad in her swimming outfit shortly before being put in the coldy pool and freaking out :)

On reflection this was not such a good idea as the water was that bit too cold and man did she freak out! This also led to the odd freak out during her nightly bath as she developed a temporary aversion to water although thankfully this soon went away!




Ava hanging out with Duffo. She got non stop attention all week and loved every minute of it. We saw a huge change in her over the holidays as she is getting really grown up and animated.

Miss her now I am back to work and don't see her every day. Duffo sends me super MMS snaps of her anyway so I see whats going on.



This was more like it, Ava *loved* the indoor (heated) pool. She pushed a ball round the pool and chased a small plastic boat! This was her first swim ever and we all really enjoyed it

Overall the holiday was really great, we needed it badly and it was great to get away! Back to reality now and already getting a poxy cold :(

Almost Holiday Time!

Here is the actual passport for Ava, this may well be the cutest passport in Irish history (well I would say that)

Where There's a Will

Last night I attended a talk organised by Carmona Services at St John of Gods Glenageary. This talk specifically concerned the importance of making a will *especially* when you have a child with special needs.

The presentation was given by a solicitor John Costello who is also involved in St Michaels House and has a brother who is autistic and in full time care.

I must say I found the talk highly beneficial and this post is *my* interpretation of the information provided from my personal perspective.

Should this post already be too long here is the main point(s):-

Make a Will, not next week, contact your / a solicitor today!

• Special needs or not make a will immediately. Contact a solicitor and do it now ! Get it? If you don't and you die bad things can happen (seriously some of his examples were frightening)
  
• Appoint trustees. A trustee is an administrator of finances
• Appoint guardians. A guardian is concerned with welfare of the child.
• Consider putting in place a Discretionary Trust. The speaker said that this is vitally important however I am doing this de facto through my trustees
• Consider a letter of wishes which outlines specific requirements.

Now I will take questions, yes you down the back?

First Day at School

Ava started school today in Kildarton Glenageary! I was tied up with work all day so the Duffo took her. I am going to go up next Monday which I am very excited about. This is the rather stylish outfit she wore.

Duffo and Ava learned loads more signs including "love", "grandma", "teddy bear" and "friend".

Also got an invite to a talk on making a will tonight which I will write up tomorrow.

Maisie-Mail

Got a nice email from our fab friend (one of many) Maisie this morning. You may remember Maisie from such blog posts as "Auntie Maisie and the Fancy Shoes ? Anyway here it is, a lovely email from a lovely lady:-

"hey - just wanted to tell you i just looked at all the stuff in the blog - WOW so emotional and honest and fab and i just feel we have been such a big part of her life too since the moment in the eagle house when you told me i was going to become an auntie right up to now and forever hopefully - every step of the way that you describe is so clear to me (well the parts i was in obv) and how amazing is it now to read (and laugh) about the jazz hands singing and dancing and related to each other stuff - all the things that seemed so insensitive at the time and now you realise they are all part of ava's story and it proves that it's far from tears and bad things around that child it's about laughter and joy and fun and smiles - (no jazz hands) so i'm very proud to know her and be part of her life - and as for you two - you are both just fab parents and even though she can't indicate it to you yet - ava knows that too..............xx"

Ava Is Goin on her Holidays

Yup Ava is going to Portugal end of the Month for her first Holiday.

Here is her passport photo which we stuck on the fridge and it makes us laugh daily :)

People dropping by...in several ways

So I installed Google Analytics (the big nerd that I am) when I started this blog and have just checked my stats and people are actually visiting here in decent numbers, yay!

This has inspired me to do some serious updates this weekend and also update my links and blogroll so I can send on traffic and people as other people are sending me traffic.

In other news:-

• Duffo has quit her big glam job to stay home and look after Ava.
• Duffo has gone to meet the other Mum's from the Down Syndrome Ireland forums. She brought her legendary chocolate cake. I am secretly hoping she returns with some for poor old Dad.
  

Kildarton, Signs and a bit of the ol' Reachin'

So Ava finally starts "early services" in Kildarton House in Glenageary next Monday. Myself, Ava and Duffo are super (duper) lucky to live not a quarter mile from Kildarton! We are also only a mile from Carmona St John of Gods so every day we see people with Down Syndrome (of all ages) coming and going. We also have a superb social worker, physios and everyone at Kildarton is really cool.

Kildarton is superb, it even has a beautiful garden designed by Diarmuid Gavin. We did a quick visit there a while back and it was very emotional to see all these gorgeous kids sitting in a circle singing thinking Ava will be one of them soon. They had an open day and we got to hang out with other parents and being Dublin we recognised some of them.

Also today we got our first 'signs' to do with Ava. They are:-

• Dad
• Mum
• Thank You
• Hi

Finally we are trying to get madam to roll over and are getting her to reach for rattles and stuff. She is doing well but prefers to keep pulling up her jumper :)

Down Syndrome Forums

The Down Syndrome Ireland Forums are a great resource. Both myself and Duffo are members. I find the forums a real help and really enjoy some of the blogs I have found on there.

Today Duffo went to a meeting of mothers from the forum, the first one was hosted by Cathal's mother (of Cathal's adventure blog) in Crumlin and there is another one Thursday Sept 4th.

Be warned as Duffo is busting out her infamous chocolate cake for the next one.

Ava's Christening

We had a fab Christening for Ava on August 3rd. Our good friend Father Declan Doyle (best priest ever) was master of ceremonies and we had a nice party afterwards in the Purty Kitchen in Dun Laoghaire thanks to our friend Buzz.

Bouncey Bouncey = Laughs

This video is courtesy of Uncle Scott and Auntie Norma. This is Duffo doing the tried and testing "Bouncey Bouncey" which usually results in a laugh and often times the giggles! Moments like this make life worth living!

And the person not going through to the next round is....................

This was one of those ones that sneaks up on you. We had met Dr Orla Franklin (nice lady) briefly in the Rotunda and were told that yes the baby we ordered had in fact three small heart holes but they were nothing to worry about. Just as well as we had binned the receipt.

We arrived for a follow up in Crumlin (which is Irish for 'Hospital with no parking') and began the test.

What followed was 15 minutes of silence and stomach churning tension while Dr Franklin scanned Ava's heart. Myself and Duffo started to look at each other like "something is wrong here". At the end she gave us a very positive diagnosis as some of the holes were already closed! Hurrah.

That was good laugh, Dr Franklin would make a good X Factor judge if the whole heart expert thing doesnt work out.

Baby Ava Journey Video

After a few weeks at home and all settled in I put this little clip together.

Home is where the Heart (with 3 holes) is..

Yay! April 18th and we are home! No more feeding tubes and ICU beeps!

The super family had our house immaculate and full of food and flowers. We were beyond happy to be home. My nieces and nephews made signs and me and the Duffo had some champers.

We had such a good 2 week boot camp with the ICU nurses that it was a breeze. We were expert nappy / bath / feed people!

Auntie Masie and the Fancy Shoes

Auntie Caroline aka Maisie brought some incredibly fancy shoes in so I dashed down and let madam try them on real quick. I washed my hands before and afterwards so dont worry.

Two Weeks in Jurys / ICU

So for two full weeks we worked on the feeding in the ICU.

Duffo improved and we moved into the Jury's across the street for the fortnight. The Rotunda sent really nice social workers and again our families were superb. Everyone was such a great help.

Ava slept for most of it.

We were given the all clear on her heart with a follow up to come in Crumlin.

Some highlights from the two week ICU extravanagza:-

• The Parnell junkies, how we miss you so.
  
• A father to be arriving at Rotunda at 10am drinking beer. God help his child, coming to a robbery near you.
  
• Being asked by an Indian ICU Nurse if myself and Duffo "were related"*
• Getting flashed in the hotel bar by a semi naked Geordie Hen. "Wanna buy a watch?"

* We are not related thanks very much

Call Me Ava

I have discovered that life in ICU is not just about beeping sounds and washing your hands repeatedly. There is a nice tradition where people make little signs on the incubators with the babies name on it. I mentioned this to super niece Rachel who made one, she is a designer of the future and here is her handy work taped to Ava's ICU incubator. Have to go wash my hands, be right back.

ICU? Heart Problems? Huh?

So Ava went straight to ICU to learn how to feed.

Myself and the Duffo sat in our room (watching Judge Judy) trying to adjust to our new reality. Our friends and families were without exception awesome. Poor Duffo was post-op so was stuck in bed. I would divide my time between Jurys Parnell Street, Duffo's Room and the ICU.

We were told today that Ava may have a heart problem and maybe a stomach issue? What? Can I please go back to where I was yesterday? I would like regular old DS back now as I am not too keen on heart conditions etc thanks very much. It transpired she had 3 small holes in her heart which would sort themselves out and for that we were very thankful.

Ava spent two full weeks in ICU where between us all we taught her how to feed. She had a feeding tube and it was a hard slog for all of us to get to the point where she could get home. The day we left we were ecstatic! We will be eternally grateful to the nurses and doctors of the Rotunda

Here is a video of Ava when she was in the ICU complete with feeding tube which were 'in' at the time.

"They love singing and dancing!" (Jazz Hands)

Ava Charlotte was born in the Rotunda the afternoon of April 4th 2008. She weighed 7 pounds 7 ounces.

I have to be honest and admit that I had a strong instinct that she was going to be Down Syndrome and when she finally arrived into the world (for me) it was more a confirmation than a total shock. I think there was something I spotted in the last scan before she was born rather than a Derek Acora style premonition.

I have reflected upon this difficult day often and remember every aspect of the the delivery room in detail. We were obviously very upset but am proud of how myself and Duffo handled it.

There was a most bizarre moment worthy of mention however. As I sat talking with Duffo (who was lying on a table following the C-Section being stitched up) a very nice foreign doctor in a headscarf appeared at the other side of the table. She uttered the immortal words as some form of consolation:-

"They (DS babies) love singing and dancing"

She did so with a large smile on her face and accompanied the statement with a full on 'jazz hands' action while rocking left and right in a 'dancey' movement.

This was barely minutes after we were told and we often look back on this and laugh (Seriously)

Note I am not making fun of this excellent doctor but it was a most bizarre moment. I have nothing but praise for the Rotunda and am a registered "Friend of the Rotunda".