January 10th, 2010 by aimeem

Firstly I apologise it has been so long since I last updated but we have had a lot going on with our fabulous two weeks in the states, Taylor’s 9th Birthday, Christmas and not to mention the snow! I will start with New York. It was an amazing two weeks and we appreciated every minute we were there and unlike past visits really appreciated how fortunate we have the opportunity. When we were younger before kids and mortgages we could go at least a few times a year but you will all know that kids+ mortgage = skint!! We just now have to pay off the credit card! New York is an amazing city and I can honestly say like no other place I have ever been . We were there for Thanksgiving and Lynn, our good friend who we stay with in New Jersey (Taylor’s God Mother) has this awesome job working as a Stage Manager at all of the hottest celebrity events and award shows and she was working at the famous New York Thanksgiving Day Parade. She gave us back stage passes and we were in the VIP area where Jamie Kennedy and Jennifer Love Hewitt were presenting live which was really cool- especially for us little people from a small town in England! Taylor and his God Brother were shot live on air with the presenters and had their photos taken with them which was kinda surreal.
As I mentioned in my previous post we had two appointments whilst in the states- one with a Paediatric Neurologist and another with a Physiatrist who both worked at The University of New York. Firstly we met with the Neurologist who’s first words to me were “are you expecting another?” to which I replied “no I am just fat” so that was a great start!! We were disappointed as we had emailed over Sydney-Mae’s file and sent her MRI Scan DVD so we presumed she would know all about her s to save time in telling the entire story to date but unfortunately that would be too good to be true as she “vaguely remembered receiving the information but cannot recall so please tell me again”. As you can imagine we were a little unimpressed with that. In a nut shell she observed Sydney-Mae and did not really tell us anything we didn’t already know other than she feels Sydney-Mae has mixed Dystonic Spastic Cerebral Palsy rather than just Dystonic, and also she feels I may have suffered a condition whilst pregnant which could actually explain what went wrong with Sydney-Mae, however I am not sure we will ever really know this for fact or be able to prove this. The Physiatrist appointment went well and again she didn’t really say anything new other than she was concerned for Sydney-Mae’s left hip and is anxious we have an X-Ray sooner rather than later. She also made some suggestions of alternative equipment we may want to try and medication to help with the tightness in Sydney-Mae’s arms but that is not an option we would ever consider at such a young age, we will keep her little body medication free for ever if possible. Both the professionals said they were ‘hopeful’ she would walk. The other thing these appointments highlighted for us was that the team we have around Sydney-Mae are in fact fabulous and doing a great job and there was nothing they were missing. We thought we may be met with a little opposition when returning to the UK with the reports suggesting a hip X-Ray etc but our consultant was fab as ever and referred us for an X-Ray which we are now waiting an appointment for. All in all we were a little disappointed with the consultations but just to know the care we are receiving here is no different to America was great. We also purchased a new special needs pushchair for Sydney-Mae whilst there which was a weight off our shoulders as we had been told the one we had was not suitable yet I hated the ones the NHS were offering as they were like wheelchairs with a baby seat in. I will post a photo of her in it soon as she looks super smart!

We has a wonderful Christmas and both the children were ridiculously spoilt but they are worth it. Sydney-Mae is still too young to understand what was going on but had a great time anyway. It seems the holidays are a time when you become more aware of how things are compared to how they ’should’ have been, for example I got Sydney-Mae dressed into her beautiful red dress and put a cute bow in her hair and it was as though for a moment I expected her to just turn on her heels and run off to play with her new toys from Santa. Then I remembered and lay her down on the floor and brought the toys to her and I just hurt so much I had tears streaming down my face. The upside is thankfully these moments of sadness are very short lived, until she gives you one of her famous smiles and it is all ok. I recently read in a forum I am a member of about a little two year old who they had mis-diagnosed with Cerebral Palsy when in fact she has a brain disease and has been given a year to leave. The mother posted a message on the forum asking us all to be thankful for our children and enjoy every moment and it is moments like this I am thankful she has CP and not some other horrendous condition. My heart breaks for that Mother and her family and they are in my thoughts.
A few months back I was very excited that she has now started to sit and I am excited to say she just gets better and better with it. No it’s not the conventional way where a parent plonks the child down on the floor and walks off, but all the same it is sitting. She needs to build up endurance now which is what we are working on. She also has a few new skills-

High fives
Waves- in her own way when she feels like it!
Beginning to actually babble
Attempts to sing ‘arr’ in ‘twinkle twinkle little star’
Has discovered ‘In the Night Garden’ and watches the shows and anticipates what is coming next by giggling a little too early
With support is learning to crawl
Is beginning to show signs of the terrible two’s which is absolutely age appropriate
Is learning to use a ’switch’ (a button she hits to play toys and games on the laptop as she can’t push the small buttons)

We are still struggling with feeding as she has a tongue thrust which means she tends to push it back out again but even that is improving due to the help we have received from both her Speech and Language Therapist and the staff at The Dame Vera Lynn School for Parents

I have contact with a few mothers who are also on this journey, mostly with younger children so are newer to this journey. I just want to say keep up the good work- I can assure you it does get easier. You will see small improvements at a time but hey- they are improvements all the same. At times you feel they are not getting anywhere but what you don’t see is that the brain is doing all the behind the scenes work and you will soon see the results. Keep on keeping on and you will feel so proud of every little thing.

Much love, Aimee x