Better Late than never

Almost a half a year since my last post! Deep breath and here we go.
A quick summary of Ava, she has grown very long and is above the 50th centile for length, her weight has stayed round the 9th and her head circumference I don’t dare check. She has been registered as severely visually impaired (blind) though I am not going to accept this yet as Ava decided to be uncooperative the whole time and it wasn't till we left the hospital that she opened her eyes and started smiling and giggling. She is very close to holding her head now so we are hopeful for some further developments in the future. Her hands are of interest too, we know she can't always see them but she knows they are there as she brings her mouth to them and chews - though her 5 teeth can catch herself! Movement is getting better, she can get herself in the most amazing positions in her cot but it has brought with it problems - her ng tube is constantly being pulled out and her face is covered in scratches :(. Ava goes into the RVI on Tuesday 7th Feb ready for her gastrostomy on the 8th. I am a little worried about the op but am so pleased to be getting that tube out. It has caused nothing but grief since it went down. Despite the tube she is getting on great with her solids, taking textured foods at reasonable quantities. I have asked to start her again with liquid by mouth but as is always the case we are being super careful and can only give her thickened liquid and another videofluroscopy will be arranged and not until after the op can I start giving liquids by mouth.
Ava turned 1 on the 19th November and had a lovely sensory and hydro experience with her pals from our groups we attend. We have both made good friends and I thank God for these groups cos then what would I do? Hospital visits have been thick and fast since October, in and out with bronchiolitis, chest infections, breathing difficulties. We were due to go to Malta on the Sunday, Ava was still on oxygen on the Wednesday and Molly had a cast on from breaking her wrist on a slide which was due to come off on the Friday!!! But we did get on our much needed holiday and both girls were superb on the plane and all the time really. The weather was great for most of the holiday but turned near the end and had us ready to come home before we were due. I met a wonderful person out there too - Eileen, she was having a much needed break as she is a full time carer for her daughter too. Within 5 mins we had struck up a new friendship which continues today.
Christmas was a lovely affair, hectic but really nice. Molly gave up her dummies to Santa, both girls got far too much as usual and we ate lots. Then the illnesses set in again. Ava started to get poorly after Boxing Day and we took her in to be checked on the 30th Dec. New Year’s night was dreadful, up all night screaming, most of New Year’s Day she slept but with very high 60's resps (breathes per minute). I took her back in New Year ’s Day and we got home on 7th Jan so that was a great start to the year. She needed oxygen and antibiotics. We have just finished a stint in hospital again, this time with gastroenteritis. Ava had screamed for 10 hours non-stop so I took her in again. We always seem to weather a lot of the problems at home then go in just as she peeks and turns a corner! Well this time everyone who was looking after Ava and us voiced their concerns about us (Mark and I). Having not slept for 5 nights straight you can only imagine the state I was in. It’s hard work. Ava is such a good baby when she is in good health (her other problems aside) but she is still hard work with the care she needs - she is like a 3 month old with her needs still but with lots of added complications. When she is poorly its intensive! All you want someone, anyone to do, is offer to look after her for an hour while you sleep but because of her epilepsy the offers are very few and far between when she is well; and non-existent when she is poorly. This makes me a little sad because she is just another baby. After this episode, respite care assessment team are being sent out, something I never thought I would have to use but we can't go on like this. We are exhausted.
Talking of respite and support, our charity is going really well. The last blog I posted was just before our ball. It took place at the Derwent Manor in Consett and we were even on Tyne Tees News! The ball raised £4500 before all the costs were taken out. We have since had another coffee morning and a Christmas fair the latter raising just over £900.Niamh's dad raised £400 from a back waxing and Ava's nursery have raised £1000 from a Christmas fair they held on her birthday :)
This has raised us to the ranks of a 'big charity' with over £10,000 raised for our activities, support group and respite care. When I finish this blog I will be completing our constitution and once that is sent off we can hopefully expect our chartered charity number 15days later. We have loads more events planned so check out our website to keep up www.seizetheday-smallsteps.webs.com
I have had loads of ups and downs since last blogging and really needed to blog on a number of occasions but I find my life just gets in the way. Am so busy but that could be one of the problems. New Year’s resolution, if I need to blog I will no matter what.