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