Small Steps - Seize the Day

13lb 10oz, can see light, is aspirating - is not, is aspirating?????? Emergency medicine, emergency care plan, a ride in the ambulance, a 3rd birthday party, return to work, preparation for the lauch ball, registration as a charity and a radio interview --phew no wonder I haven't posted in a while.

In my last blog I spoke of wanting to set up a support group to help families in my situation and I have done just that. We are called Small Steps-Seize the day and are £280 off being able to register as an official charity :) My school have been ace - especially the pupils who all did a sponsored run in the rain and in fancy dress and raised £4125 for us. That was the most amazing support they could ever have given me and wow what a leaving present. I managed to go back to work in the last week but fast realised why I hadn't been able to work anymore. Ava took poorly on my penultimate day at work. I had a call from my mum - she is a nurse and wou;d never ring unless it was serious. Panic set in and here I was racing home because my little girl was doing a mega seizure. I got home and it had calmed right down and she had stopped. Mum and dad went home but were back 2 hours later when I had to call the ambulance. The paramedic arrived first and gave Ava oxygen then the ambulance arrived and we were zoomed to hospital - Ava's temp spiked at 40.1 in the ambulance and a crash team were there to meet us in A & E. If I hadn't been used to this life I would have been panicing. Ava had a seizure for 15minutes of the worst type. She stopped in the ambulance but continued to do smaller seizures on the way to hospital. they tried to get a line in her veins but she is a notoriously bad bleeder and instead was left with bruises in both arms and hands. Her temperature had steadied and she was able to stabilise - she looked like nothing had happened. We transferred up to Treetops for the night. Which brings me to the aspiration.

We were told at the videofluroscopy that Ava had not aspirated during her feed. Then we got a phonecall the next week saying she had aspirated but the radiologist felt she hadn't but speech and language felt she had!!! We are still waiting a month later for a second opinion on this issue. In the mean time I had to attend feeding clinic with Ava and it was decided that she wasn't gaining sufficient weight and that the nasal gastric tube had to go down. So whilst we were in hospital we had to stay in for a second night to have the tube down and be trained how to use it. On arriving at A & E Ava had a chest x ray which revealed some markings on her lungs but no worse than the previous x ray - but it did indicate she had aspirated at some point. Even more worringly she had a shadow on her heart and we had to go for a heart echo!! We were passed ourselves. When you are in the womb your heart doesnt need air it takes the oxygen from the blood flow so to allow this to happen there are two holes in your heart to allow the blood to bypass the lungs. When you are born these are meant to close up. Children have a hole in their heart when the holes fail to seal. Ava's heart I am pleased to say, is a happy healthy heart. Ours felt like it was breaking for that 36 hour wait for the echo!!

Ava has also seen the opthomologist. They have confirmed Ava can see light. That is excellent news because it gives us something to work with. They don't know what or how much she can see and probably won't know for years. It could be the medication stopping the messages, it could be her epilepsy stopping the messages it could be the severe damage to the visual cortex stopping the messages!!! We just don't know but our little girl knows who her mammy, daddy and sister are and we get tearful everytime she smiles or giggles. As long as I know she is happy I can cope.

Due to her mega seizure 2 weeks ago we now have emergency medicine to administer if she does it again.Quite a big thing because it could stop her breathing. lets hope we don't have to give her it!!!
All sorts set her off though - temp, infection, illness, toothache!!!!

The group has kept me busy fundraising and doing the paperwork for the registration of the charity. We can be accessed at http://www.seizetheday-smallsteps.webs.com/ and email us at seizetheday.smallsteps@yahoo.co.uk
I have been contacted by a lady in Sydney Australia who feels less alone now, a mum in Birmingham who is pleased she can share her experiences and contact others going through the same thing and have met a mum in Durham whose son has life limiting epilepsy. The fact we found each other has been a weight off all our shoulders. There are physically 3 mums in our group now - all with babies who are 8 months old. We were on BBC radio Newcastle with Jonathon Miles discussing the need for our group to support the families like us, you need someone going through it and you need someone fast to help you not to fall apart. Anti depressants, 12hours of counselling 8 hours of behaviour therapy and I am still not quite there. These families need our help desperately. I can not even begin to describe the sense of isolation and loneliness you feel in this situation. This is why finding Kate, Dawn, Rachel, Taxi and Emma has been so helpful for me and I would like to think finding Jude has helped them too.

The support keeps coming in. People are running the Liverpool marathon for us, a guy is cycling to France for us, people are collecting for us, my mum is having a coffee morning for us. Chester-le-Street businesses have given generously for our raffle and auction in September at the launch and fundraiser ball. People are just so generous and we can't thank them for their support enough. £220 more we can do it :)
I promise not to leave it so long this time.