August 30th, 2009 by aimeem

I am back! It’s been a while since I last managed to blog due to having an amazing ten day holiday followed by a weekend Hen Do and then holding a fundraiser so I have been a little busy! We went to France which was really nice but it was 35 degrees most days so very hot; however Sydney-Mae didn’t seem to be too phased by it. She was such a good girl on the flights there and back. We had an incident at Marseille Airport which was our fist experience of life with a disabled child. We obviously hadn’t told BA Sydney-Mae had Cerebral Palsy as it makes no difference to them; she is in a pushchair and sits on our lap for the flight so no difference there to any other fourteen month old. During check-in the ever so polite and helpful check-in lady (!!) advised us we must hand her the pushchair to which we explained in our best broken French we could not do that as we really needed to keep it as she is not able to sit or walk and as she weighs 251bs she is very heavy for us to carry around the airport for the next two hours. The check-in agent was insistent that we had to hand it over and I was insistent that there was no way on earth I was going to hand it over. She really did not care that I had explained she was disabled which I found really hurtful and was our first experience of the potential attitudes we are going to come up against- bring it on!!!! I will fight every step of the way if necessary for both my children. Needless to say I did not hand the pushchair over and was advised through gritted teeth that next time we travel we must tell the airline we have an ‘handicapped child’ as every airport has different security rules.

After returning we were back to the real world of a million and one appointments every week. The first one was with our consultant and it totally rocked my world and I was not expecting to hear what I was told. I was advised (Ross was working so I was alone for this one) that she feels she had mis-judged the amount of Dystonia Sydney-Mae has in her upper limbs and trunk and been too optimistic with the prognosis of Sydney-Mae walking unaided etc. She said due to the fact Sydney-Mae is still not able to sit unaided and the fact she is struggling so much to do so (she told us last Christmas 9 months ago SM was almost there) she now feels Sydney-Mae wont walk unaided and will only every be able to sit with her arms propping her up. She also said that they are not used to seeing children like Sydney-Mae whose legs feel so great so far yet her upper body is so much more affected. Usually the two would be very similar and you can’t walk if your top half doesn’t balance. I sat there sobbing into my little angel’s hair; I could not believe what I was hearing. Right there and then she took away every last bit of hope I had for ballet, walking etc. I told her I felt we had been given false hope and been led down the garden path to which I was told she too felt we had and felt the professionals had a lot to learn from this experience. Request please- could the professional team STOP learning from Sydney-Mae? The Maternity Team are to learn to listen to mothers from me and our experience and now the professional team we are under. Kind of just makes everything hurt that much more. Ross’ attitude is that until Sydney-Mae says ‘Daddy I can’t walk without this frame’ he will not believe it so I am going to join Ross’ way of thinking. It is amazing how resilient we are as within a few days I had moved the goal posts in my head and said ‘well Ok- if she can’t walk unaided then at least she will be able to walk with a frame’. Having spoke to a few other respected professionals we are involved with and having been told that they are not all on the same page as the consultant we are just now taking every day as it comes. The weird thing is that being as she has just laid there for fifteen months now I just cannot imagine seeing her doing something else- anything else! I pray the day will come where I can share a photo with you all on here of her sitting and up on her feet. All say your prayers please guys.

We went back for our three monthly visit to the Scotson Technique and Linda Scotson was very pleased with Sydney-Mae’s progress. The shape of her Diaphragm has changed greatly and her hand function, especially her hand-to-mouth is so so much better. We have our new set of exercises to do for the next three months and hope to continue to see more improvements. Linda Scotson has every bit of faith in Sydney-Mae sitting and walking unaided so I draw strength from that.

I organised an Adults 6-A-Side football tournament and family fun day last week and it was a great success- we raised £3,700 which we are so happy with and will go a long way to help cover costs for Sydney-Mae’s therapies and equipment this coming year. We were so well supported by our family and friends on the day all taking their turn to sell raffle tickets or flip burgers and we are so so blessed to be surrounded by such amazing people. My darling Brother-In-Law was in the kitchen cooking from 9.30 am until 4 pm and we thank him so much.

While I work two days a week my mother has Sydney-Mae, however we now feel she would benefit greatly from being in a nursery surrounded by other little toddlers who we hope will help stimulate her and make her want to do more. It was great her being with Nanny but to Nanny’s own admission they spent most the day having cuddles which is very nice but not very therapeutic. Also Nanny has a really bad back and knows that in a year’s time she may not be able to lift Sydney-Mae all the time. We have found a wonderful nursery that have shown great enthusiasm in taking Sydney-Mae on providing she has a 1 to 1 support. Just hearing that request made me know we had chosen the right place as they also recognised that in order for Sydney-Mae to have full inclusion there e.g. to be able to play musical chairs she needs a pair of hands dedicated to her alone. The manager there said they want to do what’s best for Sydney-Mae so she has said they will ensure all the team in the class she will be in will have all relevant training e.g. be taught by our Physio how to handle her and how practise her Physio as with her speech and language etc. They also said they would adjust the menu accordingly to meet Sydney-Mae’s needs so all in all I am very positive and excited. I have contacted the Education Inclusion Team who have said they will fund for Sydney-Mae to have the 1 to 1 support as required for her to attend and we feel greatly supported with the process we have to go through so I hope this continues. We are aiming for January but have said unless all the equipment has been provided to enable she can do every activity with her peers e.g. a little wooden adapted chair to ensure she can eat with her new little friends then she wont be starting until it has. To see Sydney-Mae there when we visited really was a picture- she was trying to jump out of my arms to be with the children and he little legs were kicking. It was great.

Sorry to have gone on for so long and I promise not to leave it so long next time! x