Final Countdown

The last few months have been a whirlwind of fundraising, organising and planning in order to get Ava the care she needs to improve her Global Developmental Delay. I can't believe these are her last few days. She graduates at a huge party tonight with a presentation of her medal and diploma. The first week went amazingly well with her seizures were well reduced. She has improved her head control yet again and is able to recognise almost immediately when she is required to sit up. These may seem small improvements but for Ava and us, her inchstones are mega achievements on her part. Her brain was so damaged by the hypoglycaemia trauma that her cognitive skills take up to 3 or 4 minutes to respond. You can see why a quick recognition is so big. Ava is stronger again and we may be on the recovery road to get back her swallow and improve her oral eating. We even saw her sucking in her sleep! We are really hoping it wasn't a one off but I am thinking if the reflex has appeared once it can again. So many positives from this visit that we have asked for availability in April. Ideally we would come back in November but it is super cold here in winter. I enquired about February and they said the temperature is between -10 and 5°c. Not good for little people with complex needs so through default our next visit will hopefully be April. Week 2 has been a little fraught. Monday started well but on Tuesday I recieved a call, could I come down to the gym. Ava was having lots of seizures and the neuro dr was in attendance. It was decided that Ava would continue her exercises without her suit for the next few days and see how it went. So the new routine began. Ava hasn't slept for the last 4 nights which may explain the sudden jump in seizure activity. One of us takes Ava down to thermo cryo contrast therapy at 7.40am ready to start exercises at 8am. The other takes Molly off to breakfast and we swap half way so myself or Mark can get breakfast before it finishes. Ava gets her massage after her exercises and since crisis Tuesday she has done very well. Its unlikely this visit will see independent sitting due to the blip thanks to her epilepsy; but one things for sure we are well on the way again. Ava having her massage in the pics below.

Showboating? Nie

It may seem funny but I now have a multitude of amazing friends I have never met mainly through facebook. It is because of these friends that I haven't been sectioned lol. I am not saying for one second that the friends I can converse with face to face aren't amazing, because they are. I don't think they would be pleased if I called at 2am or whatever crazy time I need to just get it off my chest or am feeling particularly vulnerable. Facebook people are awake 24hrs and for a person in my position that is immensely comforting. There is a group of people who would advocate privacy and do wonder why people post things about their life on facebook. What's wrong with keeping it private? What's wrong with picking up the phone to a select few? I think I answered the latter and here is my response to the first. I have a complex needs child and unlike 'normal' children we don't all live on the same street or estate. There are 800,000 disabled children in the UK, that's 6% of all children in the UK. (http://www.nspcc.org.uk/Inform/resourcesforprofessionals/disabledchildren/children-with-disabilities-statistics_wda102831.html) Facebook helps me to connect with these families. We laugh, cry, celebrate, complain and together try to make sense of what happened to our child and how to improve our given lot. These families 'get it' they 'get me'. I know there are a lot of people out there who will see me as a showboater and attention seeker, but thats not who I am or what I am doing. Facebook is my therapy, my place to share, my sanity and at times my insanity. I genuinely don't post for likes I post to let people know how my little family are doing since our catastrophic event on 22nd Nov 2010. Ava has a huge amount of support from our community and we post to keep them up to date with her progress and as a thank you for their continued support. We also have the 'traditional' face to face friends all over the country and several across the world. Call me a cheap skate but its cheaper to keep in touch this way - quite helpful when you go from a 2 income household to your income literally being slashed in half overnight. I do know that facebook has its downside and can cause problems but for the most part it does me more good than harm and will remain my therapy for a good while to come.

Hope, dreams and fantasies

Its Sunday and we are absolutely shattered. A potential lie in which never came to fruitian. Ava liked 6am!! With Sunday also comes the closure of the little cafe which has become our breakfast haven these last few days. Back to the main restaurant we went and I was immediately reminded why I didn't like it very much. The eating area is a vast expanse of space which has an air of saddness surrounding it. Lots of families with their poorly child, wife, husband sit and eat their food in mainly silence. It feels like they came here for a miracle but dare not hope for it in case they are dissapointed and I needn't talk as I sometimes feel the same. Conflicting emotions are constantly with me. Did I do the right thing bringing Ava here? Am I chasing a dream that can never come true? But if I do nothing how will we ever know? Its hard and yet again we received news of Avas condition that has never been discussed before. Her spasticity down her left side is not just confined to her arm, hand, leg and foot. It is also down her face and her mouth. Most likely one of the reasons it has taken so long to teach her to swallow and continues to be a struggle. She has very little reflexes on her lips too. Thankfully the speech therapist has taught us how to help her. Very simple exercises for 10 minutes a day. It maddens me yet again that we had to travel many miles to discover this issue. On the other hand, if I had chosen not to Hope and not to believe we can help Ava I still wouldn't know this news. Speech therapy is almost non existent in England. We have a therapist but only see our therapist intermittently at best and mainly if there is an issue. A great example of the under staffing and inefficiency of our NHS. All boiling down to money - these are peoples lives you people in parliament are messing about with. What makes it harder to understand is that our glorious leader had a severely disabled son but lets not beat about the bush - he didn't have to suffer the ludicrously understaffed service of the NHS. Perhaps if he did he wouldn't have so little empathy for a generation of parents who are only wanting what their child needs. Because of this knowledge I will always fight for my children and seek help in my never ending quest to make Ava better.

Nearly half way

Its day 4 of therapy for Ava. She has got used to the routine pretty quick as we expected her to. Everyday this week is pretty much the same. At 8.15am she goes into magnet therapy followed by oxygen therapy at 8.30am. This therapy is different to the one our Dr said no to.Ava just has an oxygen mask on for 15 mins. We then have an hour before Thermo cryo contrast therapy at 9.40am this prepares Ava for her 2 hr intensive exercises in her suit at 10am then she gets whisked off to massage for 45mins. On alternative days Ava will have either speech or manual therapy which I will discuss in a later blog. In general she is finished by 3pm and fast asleep by 3.05pm I am writing this as Ava sleeps in her massage session. We were a little worried the first day in intensive therapy as Ava did nothing but protest and scream the whole time. I spent Tuesdays session with her with a little less protesting and Daddy spent Weds session with even less protests. We dared to leave her with her therapists today (Thursday) and she did excellently. Her therapists adore her and are lovely with her. This means that we have a 2hr downtime now for the rest of the week. They always say the children work better when parents aren't present hmmmm. I know it is very early days but I am sure there have been a few subtle improvements. Disregarding the huge seizure on arrival I am certain these have reduced in number. Not so many myclonics, perhaps half a dozen eye flickers and Jack Nicholson type seizures. (Scary smile) Her left hand seems to be open more and exploring more. I can't comment on her alertness because all this therapy has just wiped her out somewhat. It's like me or you going to the gym 4 hrs a day everyday. Imagine the effect on our bodies!! There are a couple of therapies still to explore and consider adding to the timetable and the whole timetable changes next week. I believe her intensive exercises are to be 8am to 10am!!! Watch this space for the next timetable. Almost half way!!!!

Therapy Slovakian style

Ava has a very structured timetable here in Slovakia. I like it for lots of reasons, the main being that Ava will know what is happening to her day. In all honesty I would have been disappointed if I had been here first and then gone to the States. Don't get me wrong, therapy in the States was great and brought Ava on so so much. However it lacked that variety and lacked flexibility. I would love for Paula to take care of Ava's therapy here but she is there and we are here. In Slovakia each patient gets 3!!!! Therapists for their intensive 2 hrs of suit therapy. They are not Paula but they are 3!!! The programme is just as intensive as the one in the States with 3 distinct advantages: 1. It is a 2 and a half hour flight away. 2. It is so much more affordable 3. The child gets a variety of therapies all intended to enhance and compliment each other. In the photo you can see Ava having her cryo/ thermo contrast therapy. This happens immediately prior to her 2 hour intensive suit therapy.The idea behind this therapy is to help blood circulation and muscle tone. The hot/cold elements are applied individually on Ava's calves to activate her motor system before the long intensive therapy.Following her intensive therapy she has a relaxing massage of her hands, legs and back as well as Healing Sulphur Mud treatment. This helps with muscle tenseness, improved nutrition to the bones, cartlidge, intervertebral discs and connective tissues. Absolutely worn out by the mornings therapies Ava tends to sleep through the massage and mud therapy. Her sister helped to give her a massage on her first day in the photo below.

We have other therapies to explore and will update you all on how Ava's first manual therapy goes this afternoon.

Ava's world

I am 3 and a half, as tall as my older sister, as smart as a button, as chatty as Molly and as happy as can be. My greatest loves are singing, music, lights, sensory spaces, Elmo and most of all my older sister Molly. It will be my birthday soon and my sister says she wants to dance with me, mammy promised she can and went out and got me an upsee. Its amazing. The week before Mollys birthday I walked hand in hand with her for the first time. I love love loved it. My Molly did too. Its what is going to let me dance with her on my 4th birthday. You see, I can't walk yet. I had a very bad time when I was 3 days old and was in the hospital for nearly a month. I jump alot. Mammy, daddy and the Drs call it epilepsy - my sister calls it epsilepsy and keeps getting me purple things! I cant really see very much but I know my favourite voices. If you are one of my favourites you will see my smile - mammy says its beautiful so it must be like my Molly :-) I have been on lots of adventures with my family. We have been on holiday to Malta, Florida and Slovakia. I would say the last 2 were adventures rather than holidays. I know my mammy and daddy wonder a lot about my future and if I should be pushed to my limits. To be honest I would be happy to laze about everyday singing, watching Elmo, Listening to Frozen, chillaxing in my p pod but thats not gonna get me to sit up, hold my head, walk, talk. All the things I would love to be able to do and I kniw Molly is waiting too. Its hard work but I am mainly good at complaining and am very proud of the pet lip I can do but I soon get used to the exercises. Last time in Florida I could hold my head much better and ever since then, therapy hasnt been as such hard work. I do get upset with all the jerks I do. Its hard because one second I am enjoying myself playing or singing the next my whole body jumps like an electric shock. This is annoying because it happens at least 30 or more times a day. How is a girl supposed to learn anything? When I am tired it happens a lot. Mammy or daddy usually snuggle me in to go to sleep. I love that. I even smile when I am going to sleep and sometimes even smile in my sleep. I know that mammy had to work hard to get me to Slovakia by doing lots of fundraising and I hardly got to see her much the last 4 weeks byt I wouldn't be here now if it wasn't for all the people who helped and supported her and I want to say thank you to you all. I promise to work hard and make the most of every second here. Mammy says she will blog a lot so watch this space. Much love Ava Mae Roberts aged 3 3/4

Truth Hurts?

The dreaded appointment has arrived. Why am I so afraid of this one? Its just another assessment, right? Except its not. Its to assess Avas future needs and her life expectancy. I like to think I am a realist and am not setting my expectations and hopes too high. I do realise my daughter may never walk or talk. I accept that she has severe epilepsy, is severely visually impaired, has significant global developmental delay, has slight dysphagia and brain damage. I am ok with that in my mind. Its taken a long time for it to sink in and maybe I will never fully accept it really. But here is the thing, I know all this but it somehow becomes all raw and hard to accept when its said to you by someone else. Seeing it down in black and white makes it an unbearable thing once again. I know this is double dutch and shouldn't be the case. Didn't I just say I know all these things. For me I am ok burying it in my yes I know but will conveniently forget pocket of my brain. Written and spoken words on the subject make it jump into a very unpleasant part of my brain. I want to pretend all is well and forget that Ava won't walk or talk in all likelihood. Finding out how long we are likely to have her is something I dread and hope I am not told from this report. I guess this is one of the triggers spoken about in the article about chronic sorrow. In the meantime I will focus on the immense joy she brings us instead.