Apologies for not posting sooner. Since our return from America we have been on an emotional and physio roller coaster! We had a fantastic 10 days in the New Forest and it was just what we all needed. For a change the weather was really kind to us and we had a busy 10 days. When we arrived Grace was still very weak and tired. On day 3 she began to pick up and our mission to keep her active with cycling, walking and swimming was accomplished without her even realising she was doing her physio!
It was so lovely to see her smiling again and enjoying some of the new things her "new soft legs" would allow her to do. The main positives Ed and I have noticed so far is her new found stamina. Before she would get so tired just doing a little walk or cycle ride. This was not the case and we found it strange having to keep up with her for a change! Her balance is fantastic too, no more wobbles, no more falling or tripping. Even if she did fall off her bike she would just get back on it again. Before, that would've been it for the day!
Her confidence has grown too, and she tries things she would never have done before. She was happy to go down into the swimming pool by herself, not holding onto anyone's hand. The list is endless on what she can achieve already, and some of them might seem a little trivial,but to us they are a huge step forward. Getting in and out of the bath by herself, being able to stand still without holding onto anything. Walking up and down the stairs, holding on to her handrails but not crawling up and coming down on her bottom. Being able to walk up and down the steps to our house, without holding on to anything. Getting in and out of the car by herself. She's loving her new found freedom and when she's doing her dancing around the house she keeps showing me "new moves" that she can do now and couldn't do before her "SDR procedure".
Everyday, we are making more progress. The physio is very hard on us all, and it's hard to make it as much fun as possible. When she has a "proper physio session" she is a little angel, when it's just mum, well I might as well be the physio witch/devil! I grab every opportunity if she feels in the mood. All her physiotherapists are really pleased with her and it's just so fantastic to see her lovely flat feet on the floor. She now wears night splints which she has adapted to well. Thought it was going to be hard to get her to wear them, but so far, so good. She is wearing long splints for long distance, but just little ones if we're not going far. Hoping by the time she returns to school, she will be able to manage in the short ones all day. She loves them as you can't see she's wearing them with her frilly socks over the top! She will need these for 8 - 12 months and then no splints! Just inserts in her shoes which we can get from America.
When we were in America some family friends helped and supported us so much, their daughter Becca works at an adjacent hospital to the Children's Hospital, she arranged for us to be interviewed by the hospital magazine. They ran a fantastic article and Grace made the front page. When you have time, please take a look. It's great and should give you a real insight into how everything went in St Louis.
I have an incredible amount of work to do on Grace's website, and had every intention of doing this whilst we were there, but the time just ran away with us. Since we've been home, normal life plus physio appointments have kept me very busy so i will be updating it ASAP.
The next year is going to be tough on us, but with Grace's determination and our hard work she is going to do just fine, we are positive that she is going to achieve everything she wants and more. We feel so very blessed we have been able to give Grace this opportunity and please remember it wouldn't have been possible without all of your encouragement and support. Thank you so much.
Luv Mrs Sunburyhoop.
http://www.gracemurphysdrfund.webeden.co.uk/
[Post edited 1 Jan 1970 1:00]
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