Nearly 1 Year's Old!!!

Sorry for the silence for a couple of months. As always, things have been quite eventful here. Our little munchkin likes to keep us on her toes.

Where to start??? It's been pretty full on time since Ashling got the Mickey Button in her tummy. For some reason the first week was great, which was when I wrote the last blog. Then things went steadily downhill for a while and I hadn't the heart to write another blog, desperately waiting for things to improve. But that's really only the case now.

Ashling has had quite a few problems with her mickey button. Her mucus (reflux) came back in force, plus she's had quite a few infections in her surgical wound (the opening of the tube) and she's had a lot of problems with extra tissue building up around the hole. This has all been quite painful for Ashling and a pain in the butt for us because we've had to clean and dress it about 3 times a day since she got it (and still have to). She's also still very screamish about being on her tummy because of this discomfort so we have had a standstill in her physical development in relation to rolling, pushing up with her arms etc.

Then we decided it was time for a holiday so we went to Australia. It was fantastic to catch up with really close friends and Ashling was really good during the holiday, very easy to take away, despite the oxygen etc. We were even able to take her off the oxygen most days for a substantial amount of time and she coped very well. However, somewhere along the way (maybe even on the plane), she picked up a nasty bug. So the morning after we arrived home, we had to take her the Dr. That was 2 weeks ago and she's been very sick since, with what turned out to be a bout of pneumonia. We had to go to hospital for 4 days as she was very weak and needed IV antibiotics and extra oxygen. But she's doing much much better over the last 48 hours. Hence, I've decided to finally update the blog!

Can't believe it's only a couple of weeks to her birthday. What a year! She's beginning to get quite curious about the world but also a bit bored just being at home with me. But we'll have to keep her wrapped in cotton wool for another while as she's still very vulnerable. She's such a tiny wee thing and she hasn't really had any weight gain over the past 4 months. Poor little munchkin is still only 6.7 kilos but she's very petite so doesn't look too scrawny. We recently started a new high calorie formula and we've started putting pureed food into her tummy tube so fingers crossed the next time I write a blog, I'll be reporting a weight gain.

Otherwise, we're keeping pretty well. Ger has been training every spare minute her gets as he's doing the marathon in a few weeks. I'm so proud of him -he's been so disciplined despite the crazy time we've had. Think it's been his lifesaver to be honest. I like calling him Forest Gump these days cause he just keeps on running!!!....Speaking of which, he's just set up a sponsorship in aid of Ronald McDonald House, as they were so good to us when Ashling spent the first few months in hospital.

Well, that's it for now. Thanks for taking the time to read this and for continuing to follow Ashling's progress. Lots of love, Car and Ger xxx

Hope you like the new photos!

Recovering well.....little legend!

Well our munchkin is recovering really quickly after her surgery, which went very well. She was very uncomfortable for a few days and the drugs that they gave her in the hospital didn't suit her; so the first couple of days were very hard.

However, since she's come home, she's been very content, more content than she's ever been to be honest! She's smiling and chatting more than ever. That tube must have been making her miserable. Naturally her tummy is very sore since the surgery and the hole has been leaking and ooozing quite a lot. We're keeping her on pamol and that seems to be taking the edge off her pain. If we forget to give it to her, there are a lot of tears so she must still be pretty uncomfortable. But besides having to dress the wound and stuff, which were expected problems, it's been a huge success. She hasn't been getting sick much and she's started taking small amounts of solids already. Woo hoo! Roll on some fat!

Thank you all so so much for your thoughts and prayers. Hope you like the new photos and videos.

http://www.youtube.com/watch?v=PQX-yJwex6M
http://www.youtube.com/watch?v=MLpjhFlOTWM
(Just a quick note if you have a slow connection, you need to let it load first for about 30 seconds: you'll see a pink line moving along underneath it, ahead of the video. If you’re not sure how to do this, just pause it and let it load, then work away. Otherwise, it will keep starting and stopping for you).

Lots of love, Car and Ger xxx

Surgery postoned from Mon 4th to Wed 6th

Just by 2 days but for those of you who have contacted us to know how it all went yesterday......it didn't!

The private hospital pulled out at the last minute, a bit nervous of our little munchkin's needs. They thought she'd be better off in a childrens hospital, more able for her needs. So she's been bumped up the list and she is getting it done in Starship (the childrens hospital) under the public system on Wednesday morning...tomorrow.

Will be in touch. Thanks for all the good wishes and prayers x

9 months and counting!

Well Ashling was 9 months a few days ago, and her latest party trick is that she's saying 'Dad Dad' though she has no idea what she is saying. Dad is delighted all the same. She is also starting to clap her hands. The Nanas are responsible for this trick!

Despite being a bit weak and low in energy in the last week, she's generally in great form since she recovered from that nasty spell a few weeks ago (about a month of sickness). Friends of ours were round recently and knocked some great giggles out of her. It is worth looking at. http://www.youtube.com/watch?v=2g-AgR2TKrY. Just a quick note for those of you with a slow connection, you need to let it load first for about 30 seconds: you'll see a pink line moving along underneath it, ahead of the video. If you’re not sure how to do this, just pause it and let it load, then work away. Otherwise, it will keep starting and stopping for you.

Anyway, just wanted to get you up to speed with Ashling's progress: We tried taking the tube out for 4 days and letting her get as hungry as possible. It was all very stressful to be honest cause there was so much pressure on. Unfortunately, as much as she showed an improvement in oral feeding than when the tube is in, she just couldn't take in enough milk to sustain the energy she needed to continue. It was a bit of a catch 22 - starve her so that she would feed, but with little food and low energy, she got tired after 5 minutes and wouldn't feed much after that. The good thing about it all is that we are now very confident that she will feed long term, when she has enough strength and stamina to do so because she showed a lot of interest and capability.

The other thing that we've discovered is that it seems to be the tube that’s been causing all the excess mucus and spillage. During the time that the tube was out, Ash didn't get sick much at all. So the next step from here is for Ashling to get a mickey button (a gastrostomy). We went to see the surgeon and there's a 6 month wait on the public list. Luckily, Ash is covered privately so we're actually getting it done next Monday (4th of August). Ash will be in hospital for a few days after it.

Hopefully, she will do much better with the mickey button as she will be able to eat as much as she likes orally, without the gagging feeling of the tube hanging down the back of her throat. We're really hoping that she won't need it for more than a year or two. If you want more information on her gastrostomy, have a look at the following link. Ash will be getting the balloon device mickey button. http://www.ich.ucl.ac.uk/factsheets/families/F000380/

Well that's about it for now. Over and out xxx

A Thundering Rogue

Our munchkin is turning into a bit of a character. It's amazing how babies know exactly what they do and don't want. Ashling is so stubborn. She is very keen to put her thumb in her mouth in conjunction with whichever toy she's playing with. They have to go in at exactly the same time! This can be very tricky, as you can imagine. But as soon as we try to help her, she gets all grizzly and tries again herself, ending up highly frustrated if she can't achieve it.

She's also doing the whole thing of being perfectly happy in her cot until she hears me quietly sneaking into her room for something. Then suddenly it's "Waaaaaaahhhh" as if she's miserable. Kids! They start the messin very early. She's a thundering rogue already and has both of us wrapped round her little finger.


Nothing much has changed, although she's much more alert and active with her hands and legs. The Orthopedic surgeon is going to inject botox into her legs the week after next (no there's no free samples for Mammy's forehead!). What this will apparently do is that it will temporarily immobilise her quadricept muscles (front of thigh) and so she will have to use her hamstrings instead (back of thighs). The idea is that the muscles at the back of her legs will get stronger and this will hopefully allow her to extend and straighten her legs properly. Fingers crossed that it will work!


One of our main concerns at the moment is that her weight is quite poor, she is tiny -about 14 lbs. We've been trying everything to fatten her up but she's not gaining much, mainly due to the fact that she wont take much solids and she still throws her milk up from time to time. This is frustrating the life out of me to be honest cause she's doing so well in other ways, but I'd love to see her a bit more robust! We've just started giving her a supplement which will hopefully help to fatten her up so fingers crossed on that count too.

Otherwise, she's still on oxygen and she still has a feeding tube. We're hoping to try taking her feeding tube out for a while to see if she would take more without the tube down the back of her throat! (wouldn't you!). The idea is to take it out and hope that she'll get hungry enough to feed properly (over time) But she will ultimately lose weight in the process so we're waiting till she has a bit more reserve.

Well that's it for now. She's 8 months today!!! Can't believe it.

Can you believe it? 7 months today!!!! 27/05/08

The time is flying by with our busy lives and this little munchkin taking up so much of our time and our hearts!

Not a lot has changed since the last update other than the fact that Ashling is getting stronger and she doesn't seem to be getting sick near as often anymore. Thank God for that cause our house is destroyed. I really feel for other parents with refluxy babies cause the carpet is never the same again!

Besides that, Ashling is giggling sometimes (a bit like a Beavis and Butthead type of giggle but it's a giggle all the same - see the video attached for evidence! - http://www.youtube.com/watch?v=-UhqZcSivMs). She absolutely LOVED having her Grandparents out from Ireland and has been sulking since they left to be honest. She really enjoyed all the love and extra attention that she got from them and we're not getting half as many smiles since they returned to Ireland. I'm sure she'll perk up again in a few days. We had a fantastic time with them. They spent 4 weeks with us and we did a bit of travelling with them and Ashling was very well behaved; she didn't give us any cheek along the way!

While on our holiday, we discovered that, like her Mammy, Ashling loves spa baths! There was one in the place we were staying in Taupo and she had great fun in it. See the other video attached and watch her kick those legs. Please ignore my nudity (Yeah right!) See http://www.youtube.com/watch?v=HEJ_FwZPoHU

Otherwise, same ole same ole, she's not making much progress with her feeding, and she is still on oxygen and wearing splints on her legs for about 23 hours a day. She's in great form though. See http://www.youtube.com/watch?v=XtJl9-cF20s

Over and out. Thanks for continuing this journey with us. xxxxx

Getting Ready for to meet her Grandparents!

Well Ashling is 5 and a half months now. She's getting noisier by the day, as said before, much like her Auntie Brenda (ha ha!).

She's doing alright, we have good and bad days, like any other baby. Her lungs seem to be much stronger but she still requires the oxygen for a bit of a boost. She spent a few days in hospital the week before last to have tests done trying to figure out what's causing all this excess mucus that she's struggling with. Unfortunately, they didn't find the cause of the mucus but on a positive note, it looks like her lung has reinflated nicely and she appears to be breathing a lot more comfortably now. Hopefully when she stops struggling with this mucus, she should be able to come off the oxygen. It could just be the tube down her throat that causing her mucus - anyone's guess at this stage!


She's getting clever now - starting to kick u a bit when she feels like it. Not often but boy, they learn pretty fast how soft the parents are. We are trying to harden up, but its bloomin hard!

Our biggest issue continues to be feeding. She has gotten used to wearing the splints all the time and she's starting to get quite good at all her stretches and exercises. However, when it comes to feeding, a lot of distraction is needed!!! She still only tolerates a small amount in her mouth before gagging. We are totally reliant on her nasal gastic tube to give her 99% of her feed. We dont think this is necessarily related to Escobars Syndrome, it is most likely because of the fact that she couldn't feed for so long in the hospital because of the incumbersome oxygen device she was on, so she never learned how to feed properly. In addition, most of the time that she was in hospital, she was being suctioned daily down her nose and in her mouth to get rid of excess secretions. As a result, she's very screamish about her face and has negative associations with both her nose and her mouth. Its so difficult to break this, though we're trying very very hard and getting fantastic help from medical staff (who have been amazing).

So if you get a chance to say a wee prayer for our litle munchkin, please direct it to her feeding! We would really appreciate it.

Ger's parents are arriving in a few days from Ireland to meet their first grand-child (though there's another gorgeous one since). They will be staying with us for a month and Ashling will be going on her first holiday (to Taupo and Roturua) while they are around. Woo Hoo.

Lots of love xxxx