July 21st, 2009 by aimeem
We were due to be back at the ‘Advance’ clinic in East Grinstead this week where we learn The Scotson Technique (TST) but due to Linda Scotson going to her clinic in South Africa we postponed until a week after our holiday. On our next visit we will have a full assessment with Linda which means she will take all of Sydney-Mae’s measurements, measure her breathing and basically examine her (in a non evasive way) and see how well she is progressing since we started TST. I am really looking forward to returning and it will be interesting to hear what Linda has to say and to also compare current photos with the ones from when we first started six months ago.
I mentioned in my previous post that we had had another visit to the Alex and we had had bloods taken to hopefully eliminate a condition called Angio-Oedema. I received a call whilst at work last Monday from the Dr who explained there was a problem with the test- my heart was in my bloody mouth! She quickly apologised for her choice of words- what she meant to say was that they didn’t get enough bloods so they need to take some more. I took her today to get them done and it was not nice- poor sweetheart was screaming as they had to keep going back in with the needle as her veins were not playing ball! After about 20 mins and being extremely distressed the ever so sweet nurse who was almost in tears from feeling to sad at hurting Sydney-Mae said she hoped they had gotten enough but could not possibly put her though any more pain. She is now sporting some very nice bruises on both hands- she was all smiles as soon as it ended though- such a soldier.
I attended my first Parent’s Forum Meeting for the Trevor Mann Baby Unit (where SM was when she was poorly after birth) and it was actually a really emotional evening which took me by surprise. It was hard being back on the unit- so so many raw memories- when we used to arrive on the ward and walk down the corridor, that horrific feeling of dread as to what you will be greeted with. Would she still be here? Will they tell us she has had another Seizure? I think I will always have that feeling in the pit of my tummy when I arrive there. On meeting the other parents on the forum I was surprised to hear about all of their very prem babies that were all unscathed, all doing as they should be. Don’t get me wrong I am very happy for them but wish I could have said the same. I guess I had just presumed there would be more parents there who had special needs children. It was nice to see an ex work colleague there too.
On Friday we had our visit to The Wheelchair Service at Horsham Hospital. It wasn’t as hard as I thought it would be- they were looking at our pushchair and they feel we need to start looking into a more supportive pushchair so we will wait to see what beauties they come up with! Watch this space……….
Today we went to visit the Ingfield Manor School for Parents (http://www.dvltrust.org.uk/school-for-parents.html) and I am so excited to start attending there in September with Sydney-Mae. They teach Conductive Education which is a system of learning for children with Cerebral Palsy developed by the Hungarian physician Professor Andras Pëto in Budapest, Hungary. They say it is the school for parents as they teach us parents how to help our children develop through play- sounds awesome! The minute we arrived there I just knew it felt like the right place for us- I really look forward to learning and enjoying that special time with her.
The Fundraiser is well under way now and what with us heading off on our hols soon I am desperate to get as much organised before we go as possible if not I will leave the rest to my sister who is house sitting- (joke Soph!!). I thought that organising a Football Tournament/ Family Fun Day would be easy compared to the Charity Ball but in fact I have been a lot more stressed this time- maybe as I am doing this one alone.
Taylor had his School Sports day this week and he got a first and second place- he is such a little star! I am always so so proud of him. He is just the all rounder little boy who never fails to melt my heart and make me the proudest Mummy ever- thanks for that Taylor. You are such a fabulous big brother to Sydney-Mae and so understanding of all her needs and never get upset if we don’t have as much time as we used to. Let’s go enjoy our time and have lots of fun!
July 12th, 2009 by aimeem
Well I am overjoyed to Blog on a much more positive note this week- phew! Last week was pretty pants but this week has been a whole lot better. The mass of appointments began on Tuesday when we had a home visit from Sydney-Mae’s Physio, NHS Occupational Therapist and Social Services Occupational Therapist. The aim for the visit was to assess Sydney-Mae in her ‘Breezi’ Special Needs high chair. Previously the OT’s had a concern that is was not appropriate for her- she was throwing her head back when we were feeding her which is of course a major choking hazard, and she was also sliding down the chair, vanishing under the tray! Prior to the visit I had arranged for the rep from ‘Breezi’ to come to the house and make some adaptions to the chair- a head support which prevents her from throwing her head back and a pummel, therefore preventing her vanishing under the tray!! The team where happy with her positioning in the chair which I was happy about as the other alternatives are no where near as nice to look at! Another major concern for the OT’s was that her position in the chair allowes her full use of her arms. Thankfully they were fairly impressed with her arm function in the chair; however they will be bringing another less attractive chair around to trial. Whilst the team were here Sydney-Mae decided she would be such a clever little girl and managed to feed herself two Wotsit crisps- I could have cried. It is crazy as obviously having an able bodied eight year old we have been through all of the learning to self feed etc but somehow we missed how amazingly important it was- I cannot even tell you when Taylor first fed himself- it’s sad really that we take so much for granted. During the Physio part of the appointment the Physio worked on sitting practice with Sydney-Mae and she did some awesome sitting- the best yet. She is now really saving herself when she begins to fall- more so on her right side but also on her left. Saving skills are such a vital part of development so I am just over the moon and they are really developing now. She had another two Physio sessions this week and I was told by the Physio that Sydney-Mae has the best stepping that she has seen in years on a thirteen month old with CP- Yay!
We also had a home visit from the Speech and Language Therapist who again was so pleased with Sydney-Mae. She said that every time she sees her (6 weekly) she is making more sounds- she is beginning to make some recognisable sounds now such as ‘g’ and ‘d’ which is awesome. She also stated that Sydney-Mae was eating a lot better now e.g. her tongue is not thrusting out as much and pushing the food back out and her top lip was coming down to close her mouth. All in all some great feed back this week.
It is now Sunday and I began this Blog on Friday- today we had another visit to The Alex Children’s Hospital as yesterday I noticed Sydney-Mae’s face had become swollen again (as I have explained in previous posts.) She was crying lots and really not being herself. This morning she woke up and her face was so much more swollen- she has so far had two doses of Anti-biotics and once they finish we go back to square one. We visited the Emergency Doctor and then went straight to the hospital. The Doctors there really don’t seem to know what is causing the swelling but they said that this time she was not presenting as though she had an infection. They took more bloods from her- so far they have all come back negative which is brilliant. They are testing for a Protein Deficiency which they really don’t think she has but they just have to check in order to eliminate it. This is a life threatening condition as it causes the child to have difficulty breathing- much like an Anaphylactic Shock. The saga continues! We will get the results in four days so I will keep you posted…. x
July 2nd, 2009 by aimeem
This week has been a particularly hard week for me if I am being honest. It began last Friday when I asked the Physio if she still thought Sydney-Mae was going to be mildly affected with her Cerebral Palsy. She explained that she thought that due to Sydney-Mae’s substantial problems with her arms, it was in her opinion we were now looking more at her being moderately affected. She also explained that there is a thin line between mild and moderate and that I should try not to put too much emphasis on the wording. I felt totally gutted- winded! I had pinned all my hopes on her being mildly affected, that she was going to be one of the lucky ones -that although she has CP she has it so mild that when she grows up and walks she may have a slight limp but nothing too different.
Another thing that has really been hard is that I can now ’see’ her disability- up until a week ago to me she looked like any other baby- suddenly overnight it is as though life has suddenly asked too much of her and she looks ‘different’ to other babies her age. Don’t get me wrong, she is the most beautiful, pretty, happy little soul and I would not trade her in for the entire world but you can see in her little body that she has problems. She can’t hold her body properly so when you hold her she is like a younger baby who requires you to support her as she is not yet able. I was feeling sad about this but realising I was going to have to now accept her condition for what it was.
My Mother-In-Law (who is the greatest in the whole world- you can pay me later Sandra!) and I went to a Scope Seminar in London on ‘An In Depth Look at Cerebral Palsy’ on Tuesday. We went hoping to find out more about the condition, maybe hear some inspirational stories about what fulfilling lives people with CP lead- perhaps have some time to network with the other parents about their experiences etc. Instead we spent the day hearing about how hard life is for ‘these children’, what the associated conditions are and that ‘more children with CP will have seizures than not’. I called Ross from the canteen at lunch time surrounded by people with CP crying my eyes out- it felt as though all the hope I had was gone. I was asking Ross if we had been being delusional. Had we been kidding ourselves that she was going to achieve all we had hoped she would? Poor Ross bless him (who is not used to hearing me cry as I am very reserved which is my downfall!) was sat at work and I probably made him feel really sad too. I have been thinking- I had presumed that she would struggle with meeting her mile stones but that once she reached them that would be that. People may know she walks a little differently but nothing major. After the seminar I was left feeling that all hope was lost. I realised these problems were for life and were not going to vanish once she was up on her feet.
I have now come to the conclusion that we just have to continue with what we are doing- all the treatments and therapies, keep loving her and playing with her and she will blossom and reach her full potential. What that is we don’t yet know but all I know is she is our little princess and we as a family will be there for her every step of the way.
