November 16th, 2009 by aimeem

Well Sydney-Mae is just as it is says in the title- such an amazing little star! For a while it seemed as though her development had plateau and she was not making any new progress. It would now appear that the brain was working hard behind the scenes and we are now witnessing all the hard work! Awesome! As I said a few posts back she is now sitting unaided- WHOOP WHOOP! I have lived for this day for so long. Yes she is still very wobbly and needs help to get her balance initially but hey- who cares? She does it and it can only get better. For so long this is all we have dreamt of as ‘they’ say if a child does not sit unaided by 24 months they wont walk. OK she may still not walk unaided but now I just feel like I can relax and breathe which is always a bonus!

We had a big review last week with her Consultant, Physio, Occupational and Speech and Language Therapists. You may remember me saying the last time we met with the Consultant she told me that she felt she has misjudged Sydney-Mae’s disability and felt she was actually more severely affected than once thought. During this meeting she had also stated she felt Sydney-Mae will never be able to sit unaided without using her hands to ‘prop’ herself up with. Well you can imagine how amazing it was when she saw Sydney-Mae sat there WITHOUT propping herself- was fabulous. This meeting was just a very positive and uplifting one where the following was said-

We must be sure to talk to her lots and explain her environment to her as she can’t yet freely explore it

Also to tell her things which we feel a child would usually be asking as toddlers ask lots of ‘why’ questions

It is felt she has good intelligence and learning ability and we must hone in on this by reading to her lots etc

She should be encouraged to try to self feed so start giving her the spoon- encourage her to make a mess with the food, rub it on her face etc as this is all part of learning. Those of you that know me well will know I will struggle with the mess but hey, you gotta do what you gotta do!

They also Sydney-Mae use her walker for the first time and were amazed by her walking ability- she still needs someone to give her a gentle push as she has not learnt how to propel it yet but she does so well with the walking. The Physio and Consultant agreed they had never seen such a young toddler with CP get on so well with a walker. She is just such a little star!

We had our three monthly visit to ‘Advance- The Scotson Technique’ (www.scotsontechnique.com) last week and Linda Scotson was ever so excited with SM’s development, especially the sitting which was great to hear. Her body shape is changing as predicted and proved by the measurements taken and her breathing has drastically improved. When we had it measured in January of this year her range for velocity of expiration in the abdominal section was 42.99 where as this visit just ten months later it was 2.8. Again just great news.

We are off to New York next week and whilst there seeing two professors at New York University which we are just so excited about and hope they have lots of feedback and information for us. We have sent SM’s file, my maternity notes and the MRI and EEG Brain Scan results.

Here are a few more photos of the star herself.

November 4th, 2009 by aimeem

Enjoy!

Sydney-Mae on her first ever flight and she loved it

Taylor reading to his little sister- such a lovely big bro x

On her roll which means she is on her knees helping her to break her pattern

Sitting up unaided but not looking too happy about it! Mummy and Daddy are though!

Our beautiful halloween pumpkin in her new walking frame

Sitting again- uh oh where has Robyn's head gone though?!!!

November 2nd, 2009 by aimeem

It has become apparent to me in recent weeks that having a new sibling who has special needs is quite difficult for Taylor. Taylor is almost nine and a very grown, independent and confident nine year old at that. His behaviour had started to be quite challenging and Ross and myself found ourselves constantly telling him off, shouting at him and generally being frustrated. It wasn’t until I was in conversation with Taylor a few weeks back and we were talking about Ross and I had said “you are lucky as you have such a good Daddy” to which he replied “not anymore, he used to be”. I was very taken back and asked him what he meant when he replied “well before she came along”. She of course meaning Sydney-Mae. He had never once before made any negative comments about her, he is such a loving and gentle brother with her. I had a long chat with Taylor about how he felt and he said that we used to play with him lots; play board games etc and this had all but stopped when his sister came along. I felt as though my heart could break because he was absolutely correct- we had forgotten to do all those things. Obviously this had not been on purpose but when you have a new child with special needs and complications life is not as it once was- you are at continuous appointments, always working hard to help the child reach their full potential and just generally become consumed with fear and worry for the future, as well as joy for today. I called Ross to tell him and he felt as terrible as I did. Needless to say we have been playing much more with him and his behaviour has gotten much better.

Yesterday I was changing Sydney-Mae’s nappy and he asked me if she will always need her nappy changed. I replied that I pray with all my heart not but that some children with CP cannot be toilet trained so we would just have to wait and see. He then asked if she could not be toilet trained would he have to change her nappy when I and his Daddy die. I assured him that if that was the case she would have carers to look after her and he would never be left to look after her if he did not want to. He then said “I won’t mind- I am going to have a massive house so she can live with me with a swimming pool which she can use”. I could have cried, half because he is such a lovely little boy to feel that and secondly as it hurts to think that at the age of nine he is wondering who will help his sister when he have died.

Today was the first time we took Sydney-Mae out with her new walker. She is not confident in it yet as we have only had it a few days so I thought we could take it along with us and put her in it in the local playland. Taylor carried the walker in and as he did we heard this little boy saying “that little boy can’t walk properly, he needs a wheelchair” (why someone needing a wheelchair would be carrying a heavy walker is boyond me). Taylor was mortified at this and said to me he did not want to have to carry it as he found it embarrassing. I asked him if Sydney-Mae is one day in a wheelchair is that embarrassing and he said “yes”. I felt like telling him off as I was so hurt and the tears were stinging my eyes but then I realised he is only 9. I need to let him work through it himself. I know if ever that time comes he will be proud of his sister and push her down the road, because he is a good loving boy. I just feel as though today was a tough day as it was the first time anyone knew that she has a disability due to the walker- but screw them! She is my little princess and I am so proud of her. I am proud of both my children.

I guess my reason for this blog is to highlight the difficulties for the siblings of special needs children. It must be so hard for them as life is not as it is for their friends e.g. Taylor can’t just sit and play with Sydney-Mae in the traditional sense. They can’t go run around the park together or Sydney-Mae is not the normal annoying sister who steals his toys and runs away. I now have more realisation and understanding of Taylor’s feelings and we will ensure he does not feel left out again.