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!