The Hard Times

I'd be lying if I said these past two weeks since coming back to the hotel have been easy. They have been far from easy. Abigail is at the start of puberty (there is a possible link between extreme premature birth and early puberty in girls) and so in addition to the enormous emotions and stress she has undergone relating to major surgery she has also had to contend with the argumentative nature this creates within her as she begins her physical and emotional transition. This was another reason we had to get on and have this operation now, and without delay.

Sadly for us this creates, nothing but yet more hard work! Abigail has always had a feisty nature to her which I have been extremely grateful for, knowing this attitude will get her the best in life. However, when we are up against it and she 'digs her heels' and is stubborn beyond belief it takes an awful lot of patience and hard work to talk her around to finally seeing sense. Having discussed this with other parents these negative attitudes and the huge emotions Abigail is experiencing does not seem to be something the younger children have to deal with. They just accept and get on, but maybe when you are so little you don't have to deal with trying to manoeuvre and hold up such a large body. I have heard that Dr Park has concerns over some of the American children who are so overweight, being suitable for SDR, and I can see why the weight issue is of such importance.

It was only 2 weeks ago that a trip to the toilet, particularly during the night, required Tim one side and myself the other, to take the weight of her body and walk her to the loo. We have had to yell at her and be cross to get her out of that chair and on her legs in order that she build up the strength to be able to take her own weight. We've had many tears of frustration, despair and of promised efforts for the future. It's a tough love we have, but it's the best love. Abigail knows this. We have always laughed together and cried together. Little Talia has chanted her name along with Pola and Julia to motivate Abi. Talia has felt Abigail's despair, just as we have, a raw, painful, cutting despair but we all know the Hope just around the corner and it is that vision that spurs us all on for that better life. Bit by bit, little, by little, we will get there. That's why our second strap line to the footsteps logo, 'one step at a time' was so important. This journey to that new life can not be rushed, it is going to take months and lots of hard work and determination.

There may be some of you out there who say we shouldn't have put Abigail through all this but I would say to those people to judge us when you've had your own child literally beg you between sobs to change their life by any means possible. Not on a one off 'bad day' but over and over and over again over years. Abigail also suffered a breakdown when she was 4 years old because she watched little Talia, at 1 year old learn to walk. It was only with Prozac that Abigail got through this time. AT 4 YEARS OLD! A child who wakes in the night because she dreamt she could run and then woke realising she couldn't. Abigail has sobbed her heart out to us on numerous ocassions because she doesn't want to be like this. She's wanted to take a hammer to her wheelchair because she wants legs that work. It is remembering all of this that gives me the determination and strength to carry on and change things for her.

Always being one to put the girls first, I had packed Calpol but hadn't given a second thought to bringing paracetamol or Nurofen should one of us become ill. Last night I wrote the blog feeling awful. I now know the pain was nothing to do with having strained myself doing Abigail's physio I obviously have a bug. My whole body ached and I had a temperature and the shivers. Not having any pain relief I had to resort to the Paracetamol with Codeine prescribed to Abigail. It got me through the night and I took it again first thing in the morning. Although it took the temperature away all my limbs ached and I felt so weak. What I mean by this is of course I can do usual stuff like lift a cup etc. but I struggled carrying Abigail's walker (it is quite heavy) and I certainly didn't have enough energy to get her out of the car and into her wheelchair. And so because I've not felt at all well these past two days and because once we get back to the UK all Abigail's stretches will be down to me, I am encouraging Tim to take his turn now.

Abigail walked in her walker from the restaurant back to our apartment which is a decent amount of distance and a lift ride. Despite being apologetic about how half of yesterday was wasted due to her arguing about not wanting her stretches performed she tried to play the same card again. This must have wasted yet another hour before she finally saw sense and let Tim get on with it. Oddly enough she seems quite keen to walk in her pods rather than her walker, which is very much harder work for her, but requires much more supervision. This is great though, so I'm not complaining.

We briefly visited St Louis Mills, an outlet centre, where we got Abigail some T-shirts. It's been very, very cold at times outside but is roasting inside add to that 'working out' and I think the thick sweatshirts and jumpers were just too much. Both girls drove us both bananas with there constant arguing and crying over one thing or another. Very, very wearing.

Next we zoomed back to the hospital for another physio session with Abigail's favourite therapist Beth. We had a new toy to play with today. It is a machine called a Biodex. Hopefully the video's explain a bit about how it works. But basically the machine exercises the leg and forces the patient to push the leg iron up and down against a resistance. The computer then measures how well the patient does for each leg movement and can be varied to make it harder or easier, quicker or slower. If you look at the video you will see that Abigail's legs both move when she is trying to push up the left leg. This is related to her Cerebral Palsy and the fact that she has difficulty moving one limb and not the other. It did however get better through the exercise. Just need to find one of these machines in the UK now... all ideas appreciated.

Or Link : Setup

Or Link : Power !!!

After this she was rewarded with a fun session with coloured shaving foam on mirrors. You will see what I mean from the pictures. Abigail has always been unable to move her toes so this kind of exercise encourages those muscles. Abigail also did some walking with her pods for Beth during physio, which she was very impressed with. I might add that I spent the majority of this session huddled in my coat in a boiling hot room feeling awful.

After the session we tried to get Abigail to walk out of the physio room to the front desk but sadly she decided it was time for another row. This took another 30-45mins of her lying on the floor refusing to get up before finally giving up and getting back on her pods. We are stubborn too! Bribery is the way forward at these points, or threats to take her new t-shirts back to the shop.

Last night we posted Abigail walking with pods on Dr Park's Facebook profile to which he replied 'she is making excellent progress. If she walks as much as possible it will help her a lot. She will walk much better by the time you return home'. All like music to our ears.

By the time we got back to the hotel, having stopped off to get me some ibuprofen, it only gave about 45 minutes before we were supposed to be meeting all our fellow families downstairs for a pizza party to unite for a filming session which we hope will form part 2 of the BBCs filming for Inside Out West at some point in the future. All I could do in that time was lie on the bed still in my coat and wait for the tablets to kick in and my body stop aching. You remember this when that footage goes out!!

Babysitting

Ok that's all for tonight. I think I've bleated on long enough and it's 12.20am and I seriously need some beauty sleep. Oh, by the way Abigail is now seriously beginning to feel homesick and miss really simple things as well as many people. I look forward to things other than chips/french fries and think I should get out of the habit I have developed of a glass of wine EVERY evening!!

Annabelle Rose and Ben had their surgery today as well. All appears to have gone well and we are waiting to welcome them back out of the hospital just before we leave back for the UK. All our prayers have been with them over the past 24 hours...