Casts Off....earlier than anticipated!

Ash's casts are off! We went in for xrays the other day and the Surgeon decided to get Ashling's casts removed and not to replace them. We are thrilled for her. Her feet look pretty good, one better than the other though. Ultimately, they look flatter though and in a much better position for walking. Obviously they are very scarred and sore looking, and she's pretty sensitive about them. So we're keeping them bandaged up and secure during the day, just so she doesn't give them any knocks. We will be getting foot supports soon from the Orthothic centre, which she will wear for about 6 months when standing and learning to walk.
We are really happy to have all of this trauma over, as it's only about 6 weeks before Ashling's sister or brother will be born. Woo hoo!
This is a video of Ashling's last day in her long casts. It will give you an idea how long, heavy and encumbersome they were, but at the same time, how much she she had adapted to them by the end. she's such a tropper.
http://www.youtube.com/watch?v=Edbi_zGoH2g

These are a few random videos from our holiday in Australia.
Ash and I messing outside a shop:
http://www.youtube.com/watch?v=whMk7FHvubQ

The Hennessys kids entertaining Ashling:
http://www.youtube.com/watch?v=l6LSXMSxNR8

Finally this is a wee video of Ashling in her standing frame, doing some colouring with her Daddy;
http://www.youtube.com/watch?v=9gvxNm7ykRA

Cheers xxxx

Ashling's Birthday 27th Oct 09

Can you believe that Ashling is 2 year's old? Most people say that time flies when children are young but we feel like she's been around for a lifetime to be honest, because of how much the poor girl has been through in two short years. Hopefully it's onwards and upwards from here.

Well since I last wrote, Ashling had her last surgery on her feet and the wires were removed. She is now wearing much shorter and lighter casts and is so much happier! She can bum shuffle again quite easily and she's back sleeping and eating the same as before her initial surgery. She has to wear the casts for another few weeks (prob about 4 weeks) and then she'll need a lot of rehabilitation to restrengthen her legs after being in casts for so long. We are thrilled to have the surgeries behind us, particularly since bubs two will be be here in about 6 weeks!!!! Where the time went in this pregnancy I'll never know!!!

We decided to have a little holiday after Ash's last surgery, and before things get hectic again...so we're just after having a week's holiday in Australia. Had a wonderful break. Spent time with our close friends Paul and Teasie on the Sunshine Coast and then had a few days to ourselves in the Gold Coast. Ash loved it all but we had to keep her out of the sun because of the heat being in casts and we couldn't take her to the beach cause she can't get them wet. The poor child hasn't had a shower or bath in about 3/4 months!! We do wash her the odd time though.

The next noteworthy event was her birthday. We had decided that we wouldn't have a party for her as we didn't think she'd really enjoy it at the moment. We would wait til her casts were off and her Mickey button is removed (we're hoping to do this before Christmas). But we ended up having 3 small parties for her in the end. We had one in Australia with our friends a few days before her birthday, one on the day with my sis and her family and then one with all my family a few days after. Next year I think we'll do the normal thing!

Here are some videos...

1. Birthday celebrations in Australia.
http://www.youtube.com/watch?v=PGk7jwbxPHE&feature=channel

2. Birthday celebrations at my sisters
http://www.youtube.com/watch?v=mIjOYQS8WfQ&feature=channel

3. Birthday celebration with my family;
http://www.youtube.com/watch?v=DXhAutX45z4&feature=channel
4. Ash and my bump
http://www.youtube.com/watch?v=lTQuFABSSlE&feature=channel

Thanks for taking the interest in this.

Lots of Love

Car, Ger and Ash

Some Videos - 3 Oct, 09

Hi There, Ash is doing much better thank God. She has gotten used to having the casts on and in general, her form has improved greatly. She's having the last cast change next Friday and the Surgeons will take the wires out of her feet. Then she will have to wear the new casts for about 6 more weeks. Can't wait to be done with it to be honest - all of these appointments and anaesthetics have been way too close together for our liking. Anyway, these are a couple of videos, nothing too exciting, but they will give you an idea of where she's at at the moment.

1. Playing with her cousin, David Neville
http://www.youtube.com/watch?v=FtBSfFZraJQ

2. Our friend Rohan playing with Ash
http://www.youtube.com/watch?v=E-d-ORfivhc

3. Being entertained yet again by cousin David
http://www.youtube.com/watch?v=yzsBQTJ76iM

4. Ashling got a new hospital type of bed:
http://www.youtube.com/watch?v=ZFwa9XQkKUE

5. Cousin Daniel reading/singing stories to Ash and David
http://www.youtube.com/watch?v=luX00AlelaE

6. More stories..
http://www.youtube.com/watch?v=YI2JibIXhmI

That's all for now. Will be in touch after her surgery next Friday. xxx

Monday, 7th September

One Foot Surgery down......

Well Ash had the big surgery on her rockerbottom feet. It took nearly 8 hours!

Anyhow, it seems like everything went as it should have in theatre but there were a lot of problems with pain relief afterwards. A leaky epidural was taken out after 24 hours and Ash was put on morphine, which didn't suit her at all. She ended up highly distressed and short of breath and it was all quite traumatic for her to be honest. But 4 days post-op, we took her home, where she's a lol happier than in hospital. It hasn't been easy though. She still has a lot of discomfort and is totally frustrated by her lack of mobility (as the casts go from her toes to her groin). So her bum-shuffling, bike, rocking horse....all modes of transport are not possible at the moment. In fact, the time in casts seems to be crawling so far! But alas in the big scheme of things, I'm sure we'll all look back on this time and it will seem like a drop in the ocean of Ashling's life to date!

Ash has to go back to theatre this Thursday for the 2nd part of this procedure. The surgeons will remove the casts, tighten up the wires in her feet that are holding the new shape of her bones, and then put new casts on. Then it will be 4 more weeks in these, until the next and final change. (after which the wires will be removed but casts will remain for 6 more weeks).

So more prayers needed for Thursday....pleeeeaaaase! Will keep you posted.
Thanks, as always! xxxx

PS: This is a cute little video of Ger and Ash playing the drums a few weeks ago when we were away for a weekend. The picture is a bit dark and blurry though.
http://www.youtube.com/watch?v=A1lsqKT3b9Q

Wed, 19th August, 09

Just a few videos and recent photos of Ash, showing off her shiner! She had a nasty fall off her bike and got a black eye and a bruised forehead. Didn't bother her in the least though - think I was more upset about it than she was!

The videos aren't anything too exciting but they'll give you an idea where she's at right now. Cheers x

1. Getting a kiss off her on her bike
http://www.youtube.com/watch?v=-uOaFvB9TNc

2. Dad reading to her while she tries to wear tiny glasses belonging to Mr PotatoHead! Our studious little girl....not!
http://www.youtube.com/watch?v=fXJ6SNXjjgE

3. Ash being serenaded by her cousin Katie!
http://www.youtube.com/watch?v=MKuKbh6oTHQ

4. Watching Barney while chilling out on my rocking horse - a bit boring.
http://www.youtube.com/watch?v=yPzyxzewg-0

5. Ash getting ready for bed...NOT!
http://www.youtube.com/watch?v=BEGDARsC3uU

6. Ash and Ger messing in her room before bedtime.
http://www.youtube.com/watch?v=OpPymkiW_HU

Cheers,
Lots of love, Car and Ger x

A lovely story...

People have often asked me what it's like having a child with a disability. Someone sent me this story recently and it describes perfectly what it's like. Have a read below:

Emily Kingsley said, “ I’m often asked to describe the experience of raising a child with a disability and to try to help people who have not shared that unique experience to understand it and to imagine how it would feel. It’s like this: When you’re going to have a baby, it’s like planning a fabulous vacation to Italy. You buy a bunch of guidebooks and make your wonderful plans. You’re going to see the coliseum, the Sistine chapel, the gondolas. You may learn some handy phrases in Italian and it’s very exciting. After several months of preparation and anticipation, the day finally arrives. You pack your bags and off you go to Italy. Several hours later, the plane lands. The stewardess says, ‘Welcome to Holland.’ ‘Holland?’ you say, ‘I signed up for Italy. I’m supposed to be in Italy. All my life I have dreamed of going to Italy.’ But there’s been a change in flight plans and they’ve landed in Holland and there you must stay. The important thing to remember is they haven’t taken you to a horrible, disgusting, filthy place filled with pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks and you must learn a whole new language and you must meet a whole new group of people that you would never have met before. It’s just a different place. It’s slower paced than Italy and it’s less flashy than Italy. But after you have been there for a while and you catch your breath, you begin to look around and you begin to notice that Holland has windmills. And Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy and bragging about what a wonderful time they’ve had there. And for the rest of your life you’ll say, ‘Yes, that is where I was supposed to go. At least that is what I had planned.’ And the pain of that experience will never, ever, go away. The loss of that dream is a very significant loss. But, if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy those very special, very lovely things about Holland. “

Well recovered.....

Ashling has fully recovered from her bug and her oxygen levels are back to normal. She is also eating and drinking the same as before (if not a little better!). We are absolutely thrilled with her and thoroughly enjoying every day with her and her roguish ways!

The other news is that she is going to have a baby sister or brother around Christmas time. Yes, I'm pregnant and due on Dec 21st. We had intended on doing IVF so that the chances of having a baby with Escobar syndrome could be minimised but then we decided to just go for it and pray LOTS! Anyway, the wonderful news is that we have had tests done and the baby does not carry the gene for escobar syndrome. So hopefully we will have a healthy baby for Christmas. Woo Hoo. To say that we are over the moon is an understatement!

As always, thanks a million for taking the time and interest in reading this.
Lots of love, Car, Ger and ash x0x0x0