Life And Me: Makaton, Signing and Solids

Finally.....a bit of time and a clear head. I've been wanting to write a blog post for a while but just haven't had the chance. I recently made the decision to increase my working hours to give me a little more money and, due to unforeseen circumstances, I am now working 5 days a week for various amounts of time and it's taking me and my body a while to get used to the change. Things will settle down but, for now, it's all systems go.

It's Sunday lunchtime and I'm still in my dressing gown. I have hoovered, polished, dusted and fed the dogs so I haven't been completely idle. I have also been trying to free up some space on my phone by removing all the photos that are on it. I tried to install an update for my ipad which got stuck after about an hour so I cancelled that and then I tried to free up some space on this laptop. Lots of trying but not much success to be honest.

I try to not make all of these posts about my grandchildren but it is so difficult when I think about them so often and I love them so much. I also try not to make everything about Phoebe and Sam but that is equally hard because there is so much going on with them. For now, Phoebe is the grandchild that I think about the most because it's a very important time for her with lots of appointments and clinics to attend and lots of decisions looming about her future. I have no doubt that some people will think that is wrong in some way, that the fact that I worry about her more than the others is unfair but it's the truth. I don't love her any more than my other five darlings but I do worry about her more than them just at the moment.

I had a lovely video from my daughter the other day. My gorgeous Poppy had been singled out for praise because she has been helping a little boy in her class who has sight and hearing problems. Poppy has always loved to look after people and is a very caring little girl. She has apparently been wonderful with this little boy. She has also been learning British Sign Language and I was sent a video of her signing the alphabet. She's just 6 years old. What a sweetheart! I'm so proud of her.

Pops with her BSL cards

Phoebe has been invited to some Sign and Sing classes so that she can be aware of Makaton and the symbols and signs used in that form of sign language and so, as a consequence, we are all having a little go at learning to sign. I have some experience of Makaton but it is limited so I have been trying to learn a new sign every day. I have also been putting a video of a signed word up each day on my Facebook page and that seems to be appreciated by some people which is fabulous. Whether or not Phoebe eventually needs to use sign language, which is still in doubt, I think it's a great skill to have. Sam can learn alongside his sister and, hopefully, the whole of our family will be able to have a go at signing at some point.

I travelled to Addenbrookes hospital in Cambridge last week with my daughter and the twins to attend the Stickler Syndrome Diagnostic Clinic and, apart from us managing to lose Sam's beloved Peter Rabbit cuddly, which has since been replaced I hasten to add, we had a positive experience all round. My daughter's eyes remain stable and unchanged which is wonderful. We were also able to have Sam's blood taken so that he can be tested for the syndrome despite not showing any of the traits. It is possible that he may have the faulty gene that causes Stickler Syndrome so his parents want to be absolutely certain that he can't pass the condition on. I stayed with Phoebe, who was content to suck the chocolate off of my Kit Kat bar, while Sam and Mummy went off for the blood test. Apparently, he was an absolute star and only cried when it was all over and a plaster was put on his arm. Results, and hopefully peace of mind, will be available in about 3 weeks. Sam and Phoebe were both supposed to be tested when they were born but only Phoebe's results ever came back so it was important for Mummy and Daddy that Sam was tested as soon as possible.

Super smiley Sam

I'm already thinking about what I can do as my next fundraising challenge (next year before you roll your eyes!) and who to do it for. We are spoiled for choice as Phoebe is under the care of quite a few different specialities at the moment. I have raised money for several charities and organisations over the years including Cancer Research, Chase Children's Hospice, Treloar School, various cancer charities, The Stickler Syndrome Diagnostic Clinic and SCBU at The Royal Surrey County Hospital to name a few. If anyone has any ideas either for the type of challenge or the charity that I can support please do let me know. I would prefer it to be personal or related to an organisation that supports any of my family, not just Phoebe of course. I look forward to hearing from you.

Finally, Phoebe is prone to be a bit of a diva...yes, really....and she is not particularly impressed or, indeed, keen, on taking solid food. Her Mummy sent me these the other day!!