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.