At Home......Yipee!!!! Jan 23rd, 2008

Thank you once again for your warm, encouraging comments! Well we've nearly a week down at home now and it's been great! Ashling has found it all quite strange and we still haven't managed to get smiles from her, which we naively thought would happen the minute we got her out of the hospital. She still isn't really sure what's going on but she's pretty interested in all the new things she's experiencing. Ger and I are really enjoying being at home though it's been really full on! Not living in the house for a few months has left us with LOTS of things to do but we are delighted to be able to finally do them!

I thought that we'd be settled in a few days and that I'd been well and truly on the road to contacting friends who are long overdue calling or writing to, but it hasn't really happened like that. It’s going to take us a while to settle in so please forgive us if it takes us a while to get in contact properly.

Ashling is doing well. We have 2 tanks of oxygen, a big one and a smaller portable one. The big one has a long tube so we can pretty much walk around the whole house with her, taking care that we don't trip over the blooming thing! The portable one is great for when we go out for a walk or something. New tanks are delivered weekly. The plan is to leave her on the same amount of oxygen for a couple of weeks and then to try weaning it down slowly, with the hope that we can get her off it in a few months. In relation to her feeding, she's still finding it really hard. She has forgotten how to suck/swallow/breathe at the same time (since her surgery) so we have to be very patient with her. Unfortunately, she has no interest in my boobs (something Ger can't get his head around!) but I have been expressing since she was born so she's had breast milk to date. She's now starting to take some milk from a specialized bottle. She sucks for about 20 mins each feed (manages to fool us every time - we think she's sucked half the bottle!), but she usually only manages to get about 10-20 mls (of a 120mls feed). So we end up putting the rest of the feed down her nasal gastric tube (tube down her nose to her tummy). Again, this is another contraption that we're hoping will go with time cause she doesn't like it and tries to pull it out. She succeeded the other night and poor Ger had to put another one down, but did a mighty job I have to say despite the fact that she went absolutely mental! She's getting very strong now and when she doesn’t want something, she's not shy about letting us know! It's great though cause it's a good sign of her progress. Otherwise, she's continuing to wear splints on her hands and feet when she sleeps and she doesn't make any fuss about that, thank God.

That's about it for now. Thanks so much for your interest and ongoing comments on this site. Even though Ashling is home now, we will still keep this blog going occasionally, letting you know of any major updates, and we'll continue to put new photos of Ashling on it. We've really enjoyed doing this blog and it has saved us from repeating the same news about Ash over and over again. At least now it's good news so I don't mind repeating that half as much! It's been wonderful hearing from people whom we haven't talked to for ages, thanks again and keep it up. We are at home now and our landline is 09 4268812.

Take Care, Lots of love always, Car, Ger and Ashling xxx