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.

Reality Bites

It has been quite awhile since my last post. I apologise for the shortness of it but I really had nothing to write as I was so angry, devastated and shocked. After being told Ava was focusing it was a pretty hard punch to be told that all the support she was getting for her focusing was to be cancelled and a much more specialised team of sensory vision experts would be involved as they felt Ava's vision was poor at best, none existent at worst.The sympathetic rub on the back and look of pity made me realise that this was very serious now. So what did I do about it? I went out and got as many sensory toys as I could to help switch Ava's vision connections on. A slinky, a sensory spinning fan, black and white patterns, pictures of Ava's mum, dad and sister on her wall next to her cot, spinning mirrors, even my fingers wiggled in front of her eyes can help make new connections to replace the damaged ones. I also went onto the RNIB website looking for tips on how to help a blind baby develop. I printed the information off and gave it to all family who come in contact with Ava, I did this because I want to help her as much as possible and if she isn't blind she will still benefit. It was interesting reading and gave very practical advice on how to help her develop her sight through sounds, and things you wouldn't have thought of like telling her you are about to pick her up. Imagine you are asleep and all of a sudden you are whisked up in the air without warning - pretty scary.I also resolved to set up a support group for children with epilepsy and visual problems - a task I shall be asking you all for help with in the not too distant future. Any ideas or suggestions on fundraising, becoming a charity and setting up support groups will be gratefully recieved - email jude at  jro_ling@yahoo.co.uk
A week later and the sensory lady came again as I had Ava on her side following the spinning LED fan, yes that's right I said following it. The relief in that experts face told me my little girl is not completely blind but it is a race against the clock now to try to get these connections switched on. I have trawled the internet looking for bright lights and sensory toys.A load of stuff is on its way. We have put a blackout blind up in her room so we can create a sensory type of room and have started going to sensory rooms and hydrotherapy pools at the weekend. I am joining the alansheareractivitycentre.com with my friend and planning a sensory garden for Ava, Molly and the family to enjoy. I hope to pick up some tips from the activity centre.
Ava has now been assessed by speech and language and it is thought she may be aspirating her food which means she is taking it down her trachea instead of her esophagus. We are awaiting a video barium x ray to show if this is the case but may have to wait up to 4 weeks to get it. She continues to follow the .4th centile for her weight and head size, and the 50th centile for her length. At 27 weeks she is 11lb 14oz - a weight gain of 5 oz since last week.
We took the girls to adventure valley on the 19th May for the last few hours of the day after yet another appointment. While we were there we met the new foal - Hope. He was born on Sun 10th April (Ava's christening day) and when he was 5 days old he had a mini stroke which left his head tilted to the side. The vets expect him to make a full recovery one day. As Ava was exactly 6 months that day we decided to adopt him for her and hope that they both continue to get well together.
I returned to work on Monday, probably not the greatest move of my life. I didn't realise how hard it was going to be to perform in front of 30 pupils 5 times in the day, pretending all was normal and well in my life. By Tuesday late morning I just broke down and had to be driven home, I had just had the news about Ava and her feeding that morning too. My councillor said to me on the Wednesday that I had hit rock bottom and the only way now is up. I really hope so. Unless you have been there it is hard to understand. I thought I was coping and I just got a reality check - I am so far from coping it is unreal!  My friends told me they wanted me to tell them how I am feeling to help them understand a bit better, maybe one day I can but its too raw at the moment. It takes me all my strength to give a news flash and even then its days until I can get my head round some more bad news and share it with everyone. At the moment we are still in the middle of our marathon hurdle race, and here comes another hurdle to jump.

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Our little girl is blind - at best she is severely visually impaired

The Footsteps

I know it has been awhile since my last blog but I really have been super busy. Ava was baptised on Sunday 10th April and we had a super day. The weather was beautiful, Ava was on a good day (rare at the moment) and I kept super busy leading up to it. In a way it kept me sane and focused. I have resigned from my teaching job and as of 31st August 2011, I will no longer be employed - scary but I need to focus on my little girl who has 3 appointments a week and I have 2 a week so we are kept pretty busy anyway. Ava is on a 700 calorie a day catch up diet (we are lucky if she takes half this), her milk has 100 calories per 100ml compared to normal milk which carries 8-10 calories per 100ml. I have started to wean her and that is going well, the dietian said it was the right thing to do when she wasn't taking her milk. Fingers crossed she starts to put on weight now. Her length is following the 50th Centile and her head (dare I say it) is now following the 0.4th centile. We have physio appointments, exercises to do every day, portage are now involved and I have to say the after care has been superb from the health professionals.
We have seen the specialist from the RVI now who is a paediatric neurologist. He was so lovely and even admitted to buying tat for the Royal wedding! He did a thorough check of Ava and wants a few tests repeated that he can't make sense of the results of and a few tests doing that haven't been done. He said for a baby who has been so poorly, she is doing well and he is pleased with her progress so far. I know it may seem daft but I dare not to hope too much just in case. Keep praying and hoping with us.
We have had a long string of bad days with Ava recently, and you know in the morning if she is going to have a good or bad day. I was nearly crying in front of my mother-in-law but refrained - just! Then a very kind friend of our family sent me an Easter card and in it she had put the Footsteps story for when I was coping with a bad day. This really was so heartwarming and again nearly made me cry. My family have massively supported me at this time and some friends have been fabulous. I know people don't understand deep down but I thank everyone who has tried to. Happy Easter everyone.

Someone leave the light on!

Many things have happened since the last post, many good, many not so good. The biggest thing was the visit from the physio just yesterday and imagine my relief when she confirmed that my little girl was focusing and responding to her. Ava was also playing with her favourite toy by batting out to it. Due to the medicines that Ava is on it is likely that her muscles are very relaxed and so harder for her to control so I will be placing her on her side to play as this is easier for her, she will be getting more tummy time to develop her neck muscles, as at the moment the task of holding her head on her own is very big for her - we will be getting a special chair to assist with this skill. Ava will also have some sessions in the sensory room at Chester-le-Street Hospital. Her development will be slower than others as she has been so poorly, and still is. I have to ignore normal milestones as ava has her own timetable - we don't know what it is yet!!
Her head growth still remains very low and her weight is a continual worry. She put on 14oz over 2 weeks then this week lost 3oz. It is not surprising though as we had a very bad weekend as Ava was fitting alot more and fed really badly - we were lucky to get 6oz in her on Sunday. We have responded by uping her meds but other than calming down her fits, it hasn't stopped them so it looks like we will be starting some new meds very soon. Ava had her 2nd set of immunisations yesterday so only time will tell if this is going to set her back like the 1st set did.
I have started cognitive therapy and counselling now - both of which have been very helpful for me to help cope with this difficult time. I spend more quality time with both the girls individually but have to work on getting me time - very low down my priorities but a big neccessity I am told. I hope Ava continues to make progress for the next installment and thank you for your continued support.

The Rollercoaster

This has been a difficult week with loads of ups and downs. We were struggling at the weekend - how anyone comes to terms with this type of news I do not know. Lots of people have messaged and texted and rang. It is these friends and family who have helped to get us this far and I want to say thank you from the bottom of my heart. I know it sounds daft but just that message of hope or support or the call round for a cuppa helps to make this whole ordeal easier to deal with and makes it seem less scary.

Ava has had a difficult week. She has caught the chicken pox on top of a very bad cold and cough. We had to cancel her 2nd immunisations until she is better. Unfortunately she has been having stronger and more frequent seizures, especially today (Fri 4th March). I called our consultant and spoke to him about Avas condition and the fact that she is off her feeds. It is so reassuring knowing we have him by our side.If she remains off her feeds we may have to have a feeding tube fitted. Her medicine has increased to combat the seizures, fingers crossed it works.

Early in the week we had a specialist health visitor and our epilepsy nurse visit us. As a result we have been referred to portage, physio and a dietitian. It was such a relief to know that we don't have to do this on our own. On an even brighter note, we had reduced Avas meds a little and she was a lot more alert and focused on the nurse, laughing and giggling and concentrating on her face - a break through which we are hoping means its her meds not her brain making her unfocused. Even better, Ava has managed to smile, giggle, roll over and hold her hands together this week - despite her extra illnesses. I just think if she can do it so can we.

The morning after the night before

I have been sat here a while, with lots of stuff swimming in my head, what do I say? What can i do? I wish someone could make it all disappear and make it all better again.
Last night I felt strong, this morning I feel weak. Molly had me awake for half the night - I know she is feeling the tension and sadness in the air so now has resorted to not sleeping well - this happened when we first got Ava home the last time, I so wish I could make her life happy again - a wish I will make come true.
Today has been very very tough, I think I am still in shock over the news. How can my Beautiful baby girl not lead a normal life, how can she not be normal? She looks normal in every way shape and form. I have spent many hours just crying today. My breakthrough and ray of sunlight was my girls. Molly asked mamala - (Thats me, her mammy), and daddy to come and see what Molly has done. Our clever little girl had completed her 'Stage 1' jigsaws all by herself. We all went to maccy D's - big disappointment - for tea. When we got home I did Avas bath and bedtime. In that hour she laughed, giggled, squealed, smiled, held her hands together (For the very first time) and held her mammys gaze for an age as she fed on her bottle. I thought hope had abandoned me - in fact it was me who had abandoned hope. No longer. My little girl is a fighter, my little girl is special and most of all my little girl is mine and I refuse to believe she is not going to get through this. Lets keep climbing.

Black Friday

We have now spent 2 days in a hell like state - although life was not too much better previous to this. Lets go back to the beginning.
On the 19th November 2010, our beautiful baby Ava was born. 3 days later she was in intensive care fighting for her life. She had profound hypoglycaemia, caused by my breast feeding. She had been feeding for 2 days but only getting the colostrum which did not have enough calories in to sustain her. By the time my milk was through it was too late. The consultant explained that Ava had not made the switch from burning glucose for energy to burning fat for energy. This left her with 0 glucose in her body - only one other case like this had been seen in the north East ever!!!! Your brain needs glucose to function and as such her brain shut down and started to die. It is a miracle she is even alive today. I had nursed her all that first night we were home from hospital, on my chest - kangeroo care all night - this I believe had saved her life. Why did you not contact the hospital straight away I hear you ask? Well we did 3 times for advice because Ava stopped feeding at 8.30 that first night. The response was always the same - leave her a few hours and try again.
The midwife arrived late morning and as we attempted a bottle feed she had an apnea (when the baby goes blue). The ambulance was called and we were rushed to hospital. Within 30 mins she looked like the picture you see on my profile.
It is now 14 weeks later and Ava has reached lots of her milestones - rolling over, smiling, holding her head up. We were told she has permanent brain damage but what effect this will have for her future we don't know. The reason for this is that being a baby she had hardly begun to use her brain and there is a slim possibility that she can rewire her brain and use different areas for her skills.
However, in the last few weeks Ava has stopped gaining weight and her head circumference is now off the centile chart. The consultant told us this Friday that her brain is not developing at the rate it should be because of the sustained damage to the cortex which is further backed up by the fact that she doesn't hold your attention like a baby should. It is hard wired into all baby's to look into a persons eyes, Ava doesn't do this very often and then only holds your gaze for a few seconds. He told us that she is going to need a lot of support in the future, how bad it will be he can't say. He isn't saying she won't make mainstream school but he isn't saying she will either. Ava also has epilepsy and fits dozens of times a day, she is on medication for these but so far it isn't working.
I decided to write our journey together to help us through the dark days ahead. We have made it this far, we will continue to climb the mountain. On a positive Ava smiled, giggled and rolled over today.