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.

Our warm safety blanket

I know I do a lot of bawling out of the 'professionals' for very good reasons but today hold onto your hats because that's not my aim here. I want to acknowledge the huge safety blanket  I find wrapped round myself and my family.  People are so good to us and help us as much as they can a lot of the time.
For instance, the two gentlemen who assisted me up and down the few stairs at Barclays with Ava's heavy chair despite knowing this. The huge amount of people who make a fuss of Ava when they see her and ignore her disabilities. The old lady trying to make her smile.
Complete strangers raising funds for my daughters development.  Our amazing pharmacist and her team who ensure Ava's safety and also help with her development and fundraising and never fail to ask after Ava and her sister. Our lovely lovely doctors receptionist who shows she cares and asks about the girls all of the time. I spend a lot of time dwelling on negative comments and the unkind stares, in reality I am surrounded by a fantastic community who care what happens to us and are willing to help us.
I wont lie I could write a novel on how much I am fed up with services for my daughter but I don't want to do that I want to focus on our safety blanket.   I want to focus on our epilepsy nurse who is there always on the end of the phone. Our consultant who listens to our concerns and acts upon them to the point we get a private consultation in his very busy day because our daughters seizures have gone mad. Anyone else would have said see the registrar on duty. Not our consultant.We are so very lucky with the teams we have. Ava's teachers at school, her carer at nursery, her nurse at school, the 243 people who like her charity FAITH, the massive list of people working to their best ability to ensure Ava's safety and health.
My older daughter and I saw a crash a few days ago and 2 ambulances, 2 fire engines and police attended. 3 cars had stopped to assist in the first instance. This is our safety net, our warm safe blanket. People are good, people care. I know this for sure in our neighbourhood. Our neighbours are fantastic. They help us out when times are tough, they help us raise money they ask how Ava is getting on. My amazing cousin who organises anything and everything she can for Ava and her man who will do anything for our family. We loved your surprise sensory garden tidy up. Our amazing friends who always get behind my crazy schemes to make my girl better and the best she can be. Without our warm blanket we would be out in the cold. I feel we are blessed, I feel grateful and the next time I am complaining please do remember this post. I may paint a black picture at times but  my rainbow is always there in the background. My rainbow is you and I want to say today - THANK YOU :)

The truth shall out?

I am often asked how things are at home. Is Ava ok? Many of my 'special' friends will know just what I am going to say here.
Its a very loaded question for us mums who have poorly children and a difficult one to answer. Do I give the long answer, which many really don't want as it contains the truth or do I give the automated short response of - everything is ok, she is fine?
I want to tell the truth, I really do, but so many people don't want the truth. They want the veiled answer of the world is fine and we are ticking along nicely but then even the short answer is loaded! Yes all is well but not in the normal sense of all is well. We aren't in hospital but my daughter still has 30+ seizures a day, can't see, is severely delayed, still can't sit up, is fed through a tube, needs therapy every day, has multi pieces of equipment for sitting, standing, feeding - so yes all is well!!!
The long answer, well I could write war and peace here. Many a time I have actually started to tell the truth of the situation and eyes start to glaze over - after the first sentence isn't - everything is ok - I kind of, well loose them. If you asked me how things are today and I told the truth -
No everything is not fine. Ava is on the Ketogenic diet and....... see I have lost you already. But seriously all is not well, the Ketogenic diet is having an awful toll on her body, she is constipated which means her seizures are worse and needing rescue meds. We are looking to increase the movicol to help the situation - giving her food stuff to help is out of the question, the diet is very controlled. I tested her ketones and they are very low today and our news from the EEG is that it isn't doing anything to improve her brain scan so my thoughts at the moment are what is the point? We were given melatonin to help her sleep and it isn't working - last night she was up most of the night with the exception of an hour or two. I have this huge problem to solve and my brain is so foggy from lack of sleep. Guess who is asleep now though!!! You guessed it - Ava.
Therapy was cancelled this morning because she is so jumpy and there is little point getting her to try to make connections when she is like this. My heart is breaking all the while having to stand by and watch whilst being so helpless. I like to be in control - everyday I am not and that is hard. It is only 10am and that is my truthful answer to how are you all today!!!
The short version - we are fine, thanks.

Beware of the thief in the night

I am sitting here next to Ava who is lay by my side sleeping. I watch her breathing intently. I spent what felt like an eternity this evening watching her as she had a massive seizure. The clock stopped, time stood still and my heart started to race. Panic was setting in but why? I deal with over 30 seizures a day with Ava but this one was different. This one was like all the seizures at once tenfold. Ava was in distress which made the seizure worse. I tried to calm her whilst my body was screaming inside. For the first time in 6 months Ava was given rescue meds to stop this hideous seizure. It took a few minutes to bring her out but it worked. She was still, her eyes staring at me in relief. Her breathing quickened and I had to take hold of myself to prevent another panic. Midazolam is her rescue med and can cause respiratory problems, hence the panic and why I sit looking at my daughter at 11.30 at night, 3 hrs after the seizure and meds were given. Most likely I will still be in this position for hours to come, constantly looking out for the thief in the night who could one day take my baby girl from me. The thief had been forgotten for a short while but his presence sharply felt again this evening. The pain of this knowledge is indescribable, the awareness acute, the tears now sting. Beware the thief, we call him epilepsy.

Proudest moments

Its been awhile since our return to the UK. In that time we have had ketogenic diet clinic, EEGs, Audiology, Dr's appointments, New Conductive Education Therapy at Percy Hedley, 15hrs of school a week, nursery half a day if we can, Outreach therapy and Centre based therapy with Heel and Toe 2 hrs a week, Dentist appointments and fitting in Ava's USA therapy home programme when we can.

Ava's progress continues to amaze me. In Conductive Education today we saw more of the "good" reflexes emerging. In sitting Ava voluntarily put out her hand to keep her balance :) She held onto the table to keep her balance :) She sits and brings her hands together (a small change with a massive consequence for her development). In prone she happily lifts her head as high as she can (which is high). I saw her in her class the other day and have thought I am making too big a deal of these small changes but let me tell you they really aren't a big deal, they are MASSIVE. I know you shouldn't compare but the children in her class are over a year older and until you see her with them, you just don't realise how far she has come. Thank you Christine, Isabella and Surprise, Surprise we really wouldn't have come this far without you. Ava's therapists in the USA are fantastic and keep in touch with us regularly. I wish they could see Ava now because she is even further forward than before.
We will keep pushing for more small changes that mean a lot to Ava. I know she still has a million miles to go but she has come thousands already. Very proud of her and when she brings those hands together mid line - I can't begin to describe how proud I am of her.

End of the road?

So, its the end of the road for this round of therapy for Ava. It feels a bit of an anti climax and you're left feeling a bit down, I suppose because you have known only this intense routine for so long and now it has gone. The question is what next? What happens now? We were surrounded by a great team and now they are gone. It felt safe with them, it felt right.
To make sure we are still ok with Ava's progress we have got a home programme for her to continue at home and of course the suit too. My husband and I are going to put together a programme rota to fit into Ava's busy schedule. I have ordered sensory brushes and a great book recommended by the physio before we left. I suppose I should have read up a bit more than I have but to be perfectly honest I have been in denial about Ava's problems a lot and prefer to forget the issues as much as possible. So here I am purchasing 'Understanding the teaching of motor skills to children with cerebral palsy and other movement disorders' - a great book for anyone wanting to understand and progress their child further. It gives great practical advice and because it has been co written by parents who have gone through this it is possible to do without loads of expensive equipment.
Ava is also going through an awful phase of biting herself at present. It is always her right hand and always her little finger. She has drawn blood 3 times in one week. We put socks on her hand but it does little to stop her. We are going to get that stuff that tastes awful to put on her hand to see if that stops her. I also have purchased some P's and Q's to see if that can help, it may also motivate her in the exercises we plan to do with her at home. They are basically chew toys in the shape of P's and Q's so she can hold them and once in her mouth she can get instant sensory feedback. Elmo is also a big motivation for her so You tube will feature heavily in her routine with as many Elmo songs and programmes as possible. I do think its high pitch voices too because she got a high pitched Sing a me jig for christmas and loves it. The low pitched one she got doesn't have the same impact.
When we came to Fort Lauderdale Ava had weak head control and didn't bring her hands to midline whilst sat. As we leave Fort Lauderdale Ava has sound head control(almost perfect but not quite) and brings her hands to midline whilst sitting. She responds much more often than she did before we came here. Her trunk, legs and arms are very strong so developing transition and motor skills will be much more achievable for her in the near future.
So is this the end of the road in our FAITH journey? No way. We plan to return as many times as we can for as long as it takes. Thank you everyone who got us here please can you help us do it again? Huge hugs, smiles and kisses from a much improved little Ava.

The last few days

We have had lots of positive feedback about Ava's progress in therapy. Her main therapist Paula is extremely pleased with progress she has made. Ava's head control is very near to perfect now and she brings her hands together quite often which means she is loosing the baby reflex there which is crucial for her development. I guess the biggest test is going to be when we return home and people see her, especially the professionals. Its difficult for us to assess as we are with her every day and I guess I do that wierd thing whereby I play any progress down in case I am being over the top about any small improvement made. We will see on our return to the UK.
In order to keep this progress going we hadn't realised we had the option to purchase the suit and be trained in using it. It was a big decision and we debated it for quite sometime. In the end it felt the right thing to do to purchase the suit for Ava. It is going to last her for 3 years and help her to continue to progress well. I am in the process of being trained at the moment and am doing well with it. I look forward to see her continue her progress at home.
Its the last 3 days of Ava's therapy now, she is rather tired and ready for a break. I know we haven't done much except be there but I have to say we are pretty exhausted too and are all ready to come home - well perhaps not Molly!

A day in the life ...

A forced reality check has left me feeling a little bit down in the dumps. We went to the country Lion Park at the weekend and it was wonderful, especially the feeding of the Giraffe. He was very gentle and had a very long blue tongue. Then it hit home, Ava, although she can sit for a few seconds when positioned correctly, still has no inclination to hold herself or move into any particular positions. I tried to get a photo with Ava, the giraffe and feeding it but because of what I just said it was very difficult to achieve this. Ava has done so well in therapy, she works hard but she has such a long way to go. Yes I know we need to take it one step at a time and these last few weeks have brought her on a lot but the distance left to cover is massive still.
I hear encouraging stories all the time about children with neurological conditions and how they have made great progress. A young man we know attends Houghall College and walked at age 6. A young girl who attends Therapies4Kids and has done since she was 2 started to walk at 5. One of my ex pupils with cerebral palsy just graduated in journalism. These stories always give me encouragement, so why does my heart feel so heavy these last few days? I look at my daughter and am so proud of her, she is amazing and we love her so much. I also look at her and feel hurt that she had this dreadful thing happen to her and I couldn't protect her from it happening. She is 3 in 3 months time, she should be saying her first sentences, playing with her sister and running me ragged. It makes me so very sad and its times like this that I feel so helpless. I try my best but feel its not enough.

Our days go by quickly. Get up and give Ava her meds and her first milk feed which takes an hour. Get everyone ready have breakfast. Molly and daddy off into the pool, Ava has her nap then her water, I tidy up get Ava's things ready for therapy, give her next feed before therapy and off we go to therapy for 4 hours. We come home and Ava gets her milk feed straight away, she gets her oral feed at therapy to keep her energy up. Then we have tea, get everything sorted for bed. Ava gets her meds and final milk feed - all of which take an hour each time. Her milk feeds need making for the next day, kettle gets boiled, left for half hour, powders weighed out while waiting and split between four sterile litre bottles once mixed with the water then stored in the fridge for the next day. By this time its 9pm and time for bed ready for the next day. Food shopping, cooking Ava's ketogenic diet food, washing, ironing and cleaning all get slotted in at some point in the week. It's little wonder time has gone so fast. Won't be long till we are saying goodbye to the amazing therapy staff here. We get a care plan to go home with which will help us progress Ava some more. Here is to more progress in the 8 days of therapy we have left.

Fight, fight and fight some more

We have been here nearly 2 weeks and in that time I have learnt more about Ava, her complexities and how to help her than I had in the 2 and 3/4 years I have been looking after her. The OT and physio services are not very good back home and it hurts me to say that because the people we work with are lovely people. I know its an institution thing and budgets leading to cut services and longer waiting lists but lets cut to the chase here; Every parent who has a child with a disability never asked or planned for this to happen and they deserve to have the best care for their child not to have to fight for it. These parents should be helped, supported, nurtured to do the very difficult job they have ended up having to do. Instead we fight, fight, fight all the way for everything. If a child needs a service or equipment they should get it, end of story. Instead they make you prove that your child needs it. Hello! Why would I actually choose the hideousness that is the equipment she needs if she didn't need it. Please note the word - need. Not want, but need. A basic requirement for my complex needs child to exist. It goes back to professionalism too, I am not a qualified OT or Physio (although I am tempted to do the exams just so I have a clue what comes next!) so why would I know what is the best exercise to do for my child or why would I know what the consequences would be if a certain task wasnt done with my child until I am told. They should be guiding us. In reality we had a few visits, were given equipment and left to get on with it. We had to travel over 4000 miles to get great care for Ava and spend thousands to do it. It really isn't a great state of affairs.

I now have a list of equipment to get and exercises to do with Ava and more importantly I know the worth of those exercises. If I had known the consequences of a baby not feeding for 12hrs we wouldn't even be here. Never underestimate the power of knowledge. If these exercises aren't done and the left arm doesn't get a proper arm brace then Ava's left arm will curl under and be no use at all in future. As time has gone on it has become apparent that she has lots of trouble using her left arm due to the trauma her brain suffered when she was 3 days old. As I watch her in therapy I see the huge difference between the two arms.

Having said that, Ava is doing so well with this therapy. Her body and legs are so strong now and she started with the weight lifting today to help strengthen her arms. She is also very close to sitting on her own!!! It is very exciting to see. Her seizures are very much reduced, she is growing well and going from strength to strength. I can't believe we only have 2 weekends left here. Its very much like being at home except its hotter and we have a pool instead of a lawn in our garden. Ava has had the equivalent of 20 weeks therapy at home, there are 20 weeks worth left to go. We are hoping to return with a stronger more mobile Ava. Fingers crossed x

Naps, naps and more naps

Its hard to believe Ava has completed her first week of therapy already. Its  been a lot like being at home except we have a pool instead of a lawn in our garden. Its pretty much rained since we have arrived and its been a case of getting the house sorted, shopping in and making sure Ava's culinary delights are made for her meals. We tested her ketones yesterday and they were 5.3!! That's good for those not sure. A good sign as we have noticed a big reduction in her daily seizures although another problem has cropped up instead.
Ava's therapy takes place 1-5 and hits on a big nap she has at this time. They are going to try to move the therapy 9-1 but to be honest they will hit the same problem. Ava has a big nap in the morning and afternoon. I blame the medication and all the seizures, but whatever is to blame its inevitable that Ava is going to try to nap no matter where we put her therapy. 4 hrs is a long time for anyone never mind a little 2 and a half year old. Problem is though that the naps are preventing her from doing a lot of her tasks in therapy and the more time goes by the more tired she is getting. Lets hope the ride on the air boat through the swamps helps give her a much deserved treat and well needed rest at the weekend.
The left arm cropped up again,this time they said that her ligaments are so tight in her hand and arm that its only a matter of time until it folds into a contorted position. We need a hand/arm brace to prevent this. We already have one so this is going on more often from now on. Such highs and crashes to lows that its little wonder I feel fraught, stressed and down a lot of the time. Lets hope this is our time for better days to come.

State side

Day 3 of therapy and by my calculations Ava has had the equivalent of 6 weeks worth of therapy back home. I already see a difference in her muscle definition of her legs. She slept 12hrs straight last night which is unheard of. Ava is certainly working hard. This morning she was in the prone position on her tummy and after awhile rolled from that position onto her back!! Am still being cautious about having too high expectations but its looking positive so far.She was tired yesterday and had a massive paddy in the cage so they had to bring her out, she also pushed in two 20 min unscheduled naps!
The weather is just like back home although I believe you are all still having a heatwave. We arrived after a tropical storm and a new one has begun. Its been raining more or less since we got here. Good job we not on holiday lol. Hope it stops for the weekend because we have a sensory treat in store for Ava, we plan to take her on the fan boat on the everglades which are only an hour from us. She will love the wind and movement.
Where we live are loads of canals made to reclaim the land and the therapist was telling us that the alligators swim up them from the swamps and come into peoples gardens. Alligators are protected so you are not allowed to harm them at all!! We might drive to the west too on Alligator Alley it sounds very adventurous and exciting.
I drove in Florida for the first time today. It was hard not to move my left foot but other than that it was pretty easy. Don't think I would like the interstate like. Its mad on there, every lane seems to be a fast lane and trucks are made to ride in the middle lane!!!! Think I will leave those drives for Mark.
Strange being without Ava, its my first day not in therapy with Ava and we are hauled up in the apartment with the rain. Going to make the tea and do the laundry with the Molster. We have done the food shopping and swung by the 7eleven on the way home- a fast food junkies heaven. I really like their vanilla coffee mmmm.
Can't believe our first week is half over already, we will be home before we know it. Wish we could bring the therapists with us!!

A New Hope

Well we made it. 22hrs and 4300miles later we reached our new home for the next month. It wasn't without its problems though. Having rang BA to check that Ava's special dispensation for her medical equipment was in place and that we had special assistance at every airport and they knew the wheelchair was to be brought back to the aircraft door you would have thought tgey might mention that our flight had been moved to an earlier time to London - nope! Luckily Mark had checked so we rocked up at the airport earlier, good job we did. I have never seen Newcastle airport so busy at 4am. It took us an hour and a half to clear the bag drop and security. Once that was done we could relax a little. The flight to Miami passed quickly considering we onboard for 9hrs. Once at Miami it wasn't as bad as the media had made it out to be. We cleared customs in 40mins and got our bags straight away, however my heart sunk when the medical boxes failed to appear. 20 mins later we found the oversize area and to great relief there they were. Mark did really well to steer the tiny trolley which had 6 suitcases, 4 hand luggage, car seat and booster seat onboard. We had to get to the Mia mover, which was a really cool and easy accessed monorail that was to take us to the car rental pick up. We got into line again and an hour later and 32 % tax on top of what we had already paid (ouch) we emerged into the rainy Miami afternoon with our Dodge caravan. If this is on the mobility scheme we may very well consider getting it, as it is perfect for Ava's needs. A short 45min drive later and we arrived at our new home - 4340 Seagrape Drive, apartment 7, Lauderdake by the Sea, 33308. Its 2 blocks from the beach, has a pool right outside our door, has a massive cupboard for storage (bonus), is a 2 min drive or 20 min walk to the therapy centre. Which brings me nicely to the therapy.
I have to say, I am very excited to write about this. Ava's therapists are Paula and Rosanna. They will work with her every week day 1pm-5pm (6pm-10pm English time). The assessment was very thorough and as they assessed I asked questions and got very encouraging answers. I asked what they thought of her left side, for those of you who don't really know Ava, her left side can be very tight and although we have had no diagnosis of cerebral palsy it remains a possibility. I feel that it is hard to know if she does the tightness voluntarily or involuntarily. They said that it will be easier to tell after the month if she is doing it voluntarily or not but on first examination they felt it was a sensory issue and with stimulation the issue would improve and now was exactly the right time to intervene. Having worked with Ava for an hour, her therapist said to me that she questions Ava's blindness diagnosis. She said there was no way Ava is blind! Are you crying yet Marsha, cos I did. Tears of joy.
Ava did really well with the exercises, laughing and giggling quite a lot through it. Of course tears a bit later. They started to put the suit on and Ava fell a sleep. The Pediasuit is designed to support the body, stimulate muscle tone and provide deep pressure to stimulate and fire the brain. As the boss there said "This is not fairydust, we are restarting the brain and it works" Obviously individuals respond differently and at different rates. Some will make progress fast, some will be slower. Only time will tell how Ava responds. Within a few hours Ava had the Pedia suit on and walked with support from task to task. She sat on the ball and squeezed, they rocked her side to side, they put her on her tummy, they put her in the spider cage and did more exercise. She ran 10 marathons yesterday and is only 3 hrs from the next. I won't be allowed to sit in on anymore sessions now but will be in the next room. In the 4hrs of therapy i saw only 1 Tonic clinic seizure and 4 myclonic jerks, could the diet be working finally? Fingers crossed everyone. Oh and for those interested in the weather, we arrived after a tropical storm. Its hot but wet, like having a warm shower when we go out - this is better than the heat wave happening just north of Florida! Till the next time xx

Hope Floats

Well we did it. I first heard about the therapy on Surprise Surprise, we looked into the costs late January and have raised over £12,000 to get Ava to America for potential life changing therapy. http://www.therapies4kids.com/

Now this may sound strange but people have asked me what I expect from the therapy and I really don't expect anything. Maybe I am protecting myself from a potential great disappointment because really if I didn't think this would have a chance to work then I wouldn't have tried to do it. My daughter is such a gift to us and the world. She has made us into much better people, albeit much tireder people!  Ava has multiple complex needs and everyday still manages a smile at some point in the day. A fellow Facebook friend, Samantha Kilgore, once commented that to see Ava smile makes you smile and she does joy better than anyone.

Can you see what she means?

The main demon we battle with daily is the Epilepsy. I truly believe that if we can wipe this out of Ava's life then she can get on with developing into a sitting, walking, talking little girl. As it is, Ava has upward of 40 myclonic jerks a day still and up to 4 Tonic clonics (which I am thinking have developed into sinister gelastic seizures http://en.wikipedia.org/wiki/Gelastic_seizure) This is a conversation I need to have with her consultant neurologist but as far as I believe, these are impossible to treat. We started the ketogenic diet (http://en.wikipedia.org/wiki/Ketogenic_diet) 2 months ago on a 3 month trial. The first month Ava's seizures became less forceful and a little less frequent - night seizures were noticeably reduced. However we went into month 2 and Ava's seizures morphed into the new seizures I mentioned above. The severity was enormous, needing rescue meds on quite a regular basis. Ava ended up in hospital with a chest infection and on co-amoxiclav which we now believe to have created the really strong gelastic type seizures. Epilepsy is a very complex condition and we never forget that it's one that can take our little girl at any time it likes. At present, with 3 days to go, EEEEK!, Ava has had 2 really good days of being alert, less frequent and less severe seizures. I am praying to God that this continues to last.

We are all packed ready to go, I have written the final thank you card and posted it today, I have a few calls to make, Ava gets her button changed tomorrow and I say my last few goodbyes to special friends and family who we certainly couldn't have achieved this without. 

Just to finish off before we go a lovely friend, Helen MacGregor sent me this poem which sums the whole process up:

'Hope' is the thing with feathers,

That perches in the soul,

And sings the tune without the words,

And never stops - at all.

And sweetest in the Gale is heard,

And some must be the storm, 

That could abash the little bird,

That kept so many warm.

I've heard it on the chillest land,

And on the strangest sea,

Yet never in extremity,

It asked a crumb-of me.

A huge thank you to everyone of you that has made our Hope shine ever brighter through having a little FAITH for Ava. Watch this space for video diaries, pictures and progress of Ava's next chapter in her Miracle journey.

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.