Families United Through SDR

I'm not going to give a huge blog tonight (Monday), we had a very good physio session with Nicole. Abigail worked hard at her exercises and as a reward she got to ride a trike. We have learnt that when Mad Mike takes her he does a lot of the work for her and so she speeds around the whole hospital but when she is taken by the other therapists they make her work herself and that is very hard work for her yet very rewarding for us. I explained to Nicole, one of her therapists, how Abigail still doesn't not actually think she is doing that well. Nicole wondered if it would help to have someone in authority like Dr Park or Nicole (another one), Dr Park's PA (i.e. Dr Park's No 2, not his personal assistant in an administrative capacity) actually speak to her. Nicole, her therapist, thought Abigail is doing very well, better than she would have expected, at this stage, which is encouraging.

We did a minor grocery shop, and I've completely played this down on here because to be honest it's not even worth going into, lets just say, Abigail get's very focussed on something and there is no let up. We've the same issue going on with the next time she can swim. Let's just say that after she developed her ear infection that nearly jeopardised the whole surgery taking place I'm not that keen that she get in the hotel swimming pool and put herself at risk of getting her wound infected and perhaps the risk of a hospital stay! She however is on count down to the day she can get in a public swimming pool. And don't think she doesn't know when that is, she can read! It's causing me many an argument. I can assure you, I will win, I will not make the same mistake twice, even if she is strong willed.

Back at the hotel we made a quick spot of lunch and then cleared the room for relocating from the second to the fourth floor, to a bigger room, just down the hall from Pola and family. We had arrived in the USA, with two small suitcases but we've accumulated so much stuff, with a Santa visit at the hospital, after we'd already bought quite a few things for them to keep themselves busy with, in addition to hand me downs from previous SDR patients. It was a bit of a mammoth move but we managed it, including the christmas tree and window decorations! The new room still has two Queen sized beds in one room but this time the girls get to have a bed to themselves, and we get to have our own bedroom and bathroom, meaning we don't have to clean our teeth in the kitchen sink for fear of waking them up! We also have an oven, not that I'm in any hurry to do any cooking. We generally manage with the social evenings that the hotel lays on, providing free food and alcoholic drinks Mon-Thurs for set times.

Tonight was a special evening. Abigail was allowed her first bath since surgery, along with a desperately needed hair wash. One of the things I knew would improve by the surgery was Abigail's ability to cock her leg over the bath. It is sooo hard at home to do this. She had to walk up a miniature staircase before turning, sitting on a bathboard and whilst holding my hand with one of hers and holding a bath rail with her other hand, swing one leg, often with help, and then the other over the lip of the bath. Here, although the bath is lower, without the spasticity, she is so lose, she was able to cock her leg completely over the lip of the bath. This probably sounds so inconsequential to you but it is huge to us. She had her stretches performed and then we received our guests Pola's family and Evan's family. We enjoyed a quick glass or two of Champagne/beer/wine in our room before the children enjoyed practicing their walking in the corridor with the siblings and parents cheering them on. I can't begin to tell you the feeling this provides. It is of huge support, not only to Tim, Talia and I, but especially to Abigail. She so needs the encouragement and people telling her she is doing well, it makes a massive difference to her willingness to walk. Even little Evan who has only just come back to the hotel following his surgery, wanted to copy the girls.

New Member of the SDR Crew

First Real Steps to Join In with Abi & Pola.... Hoorah !

or Link : Walking with Encouragement

or Link : Last Walking Practice of the Day

Then we all went down to the social evening and joined as many tables together to seat us all. Our group is growing! I was sat there enjoying my meal when little Evan aged 3 years, opposite, looked up and said, 'I want to walk like Abi!' Well, that was it for me, talk about touch a nerve! Are you beginning to realise the importance of spending time in the same place as others in completely the same boat? These kids really need each other. It's truely wonderful what is going on before my very eyes, not easy, but absolutely wonderful. Abigail is still very weak but I can feel she is stronger than yesterday.

It has been a good day, even though, at times it hasn't fell like it! I wonder what tomorrow will have in store ?