Little Feet - Long Walk
Hello and welcome to my blog. This blog is the journey of our family after Millie, our 2 year old daughter, was discovered to have a large brain tumour. The tumour was caused by an aggresive cancer named anaplastic ependymoma. Please feel free to read as much as you want and spread the word. If you want to know more details about the diagnosis then it is best to start at "The beginning ... " which was written in May 2011. But you are welcome to follow us from today. I have created pages that summarise the events leading up to the start of going to Florida for proton radiotherapy at the beginning of June 2011, about 8 weeks after diagnosis.
Tuesday, 18 June 2013
Hello! It has been such a long time since I last wrote anything. This time 2 years ago we were in Florida. I can't believe it is so long ago. Millie is doing really well. We have the next MRI in a few days and I don't like to say too much before an MRI just in case ... However, she does still astound me at how well she is doing and how determined she is to live life to the full. We try to live a normal life as much as possible but we do have a variety of appointments at times. Sometimes it is busy and sometimes we can go weeks without seeing anyone.
Our main concern at the moment, apart from the obvious, is starting school in September and making sure she gets the extra help she needs. We are trying to get Millie a statement for special educational needs which means that the school gets funding to provide millie with the help she needs. Our nursery started the whole process off last autumn and we were supposed to have the first meeting with the educational psychologist in January. That was then delayed to April. However, that was then cancelled due to illness (not us) and it has taken 2 months to get any information and progress. Thanks to our school Special Educational Needs Coordinator and our nursery we finally have a date for next week. Millie will need help in communal areas because she still has problems with her balance and coordination. If she is knocked she will topple. She will also probably need help with tasks that require fine motor control, like writing. Everyone concerned with her care believes that she needs this extra help from the moment she sets foot in that classroom. We just need to convince the officials.
Millie had a physio assessment the other day which was very positive, in an odd way. I was warned hat Millie was likely to plateau about a year after treatment with regards to her physical improvement. That was a year ago and she is still improving every day. With the continued improvement and her getting old enough to start to understand we are looking at changing her physio programme to be more goal orientated. Our physio has decided that Millie has weak core stability which explains lot of things. It can affect her ability to walk and run but also her ability to write as she spends all her time adjusting herself to stay upright. Millie was doing an exercise that involved picking things up with tongs using her right hand, which is the weakest side. She was doing well, her right is now about as good as her left was a year or so ago. But when our physio held her hips still there was a marked improvement. So, we may be getting a special chain for her for school and she may be getting a special pair of Lycra shorts(!) and we have a couple of exercises to do as often as possible. She already does swimming and ballet, both of which are very good for core stability.
One more bit of good news. A few months ago we decided to try and get Millie a trike so tha she could joing her sister riding up and down our quiet road. We found the perfect trike and then we found a charity called Cyclists Fighting Cancer who are utterly amazing and agreed to fund the trike. It is a custom built trike made by Tom Cat and it is amazing and expensive! It is not just any old trike. It is being built to fit her with extra bits so that she can ride it, like a supoorting seat and calipers. It will have a removable parent handle so that we can steer her and brake. It also comes apart and a new front end can be attached which turns it into a tag along. As is said, it is amazing. And they are hoping to deliver it next week!
Anyway, I am finding it difficult to find the time to keep this blog updated. As I said we have lots of little things going on these days, so when I do eventually get the chance I have so much to say I get bogged down. There a still people visiting this page and I feel guilty about not updating it. So, I have decided to start a facebook page where I can put those little updates. You can find it at https://www.facebook.com/LittleFeetLongWalk
Please feel free to like, share and comment.
Thank you for continuing to be interested and concerned about Millie, it means a lot to us.