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!!

Phoebe very grumpy and not happy with this at all but then.......

.......very happy to try toast for the first time!

Until next time friends xxxxxxx

P.S.

I've just made a recording of me practising Makaton. It's a start!

I thought I could add it to this but it seems not. Frustration. It's on my Facebook and Twitter page anyway and if I can add it to this I will. Xxx

Grandchildren, Beach Hut Visits and Glasses!

Hello my friends, hello!

What a hectic few weeks I have just experienced....fabulous but hectic....and I don't really think I would have it any other way if truth be told.
The weather has, for the most part, been really nice although the last few morning dog walks have felt decidedly autumnal with my shorts being replaced by jeans and my flipflops by trainers. Yes, I admit to occasionally walking the hounds in flipflops.
The mornings have seen dew on the grass and the house has seen an influx of spiders, the plum tree has shed its fruit and blackberries are appearing everywhere. My daughter assures me that there is an Indian summer forecast for late next week and if anyone should know my weather geek is the one! Hopefully the shorts will make one more appearance before they are packed away for the winter.

Tomorrow sees me return to a job that I left over a year ago. The break has done me good and the timing was fortuitous for many reasons but I can't be a lady of leisure forever so it's back to shiftwork of sorts for a term at least and we will see how it goes. I'm looking forward to the challenge. There have been a lot of changes since I was last at work and I feel that I am almost a different person to the one who left there...certainly I am mentally stronger and I am definitely almost 2 stone lighter.

The last two weeks have seen me revelling in my role of Nanny. Oh, goodness me have I had fun!!
The 3 eldest grandchildren came to visit and stayed for two nights which was wonderful. We had a blissful day in glorious sunshine at my beach hut. My daughter joined us and we truly had the best day as you can probably tell from these photos....

We paddled and then swam in the sea. We went to the funfair. We had ice cream. We toasted marshmallows. We went on the train. Young Noah fell asleep on the sunlounger and was later transported via his car seat in my car back to my house and into bed without waking up at all! I think it's safe to say that we were all exhausted but elated by our day. Memories are made of days like those and I loved every single minute of it. It was the happiest day that I have had in a very long time and to spend it with some of my grandchildren and one of my girls at my beloved hut made it even more special. The children want to go to the hut every single time that they come to our house regardless of the weather and I am delighted by that.

Two days later I was back at the hut but this time the weather was less glorious and I was alone. I absolutely love being there on my own. That probably sounds selfish but it's my place to be me. I can listen to music, drink tea, read the paper and eat rubbish if I want to and that's exactly what I did and I loved it!

Earlier in the same week I was asked to look after youngest grandson while his Mum and Dad took his sister to Great Ormond Street where she had an appointment at the eye clinic. It was an early start as the appointment was at 9 am so it was a bleary eyed Nanny that drove to pick up Sam and drop the rest of his family at the station.
The appointment was always going to be an important one as we were hopeful of getting an accurate diagnosis of Phoebe's visual impairment. The hospital obviously is the best in the world when it comes to children's health and the family were sent there as the local hospital didn't have the specialist equipment needed to assess the eye health of a 7 month old baby.
Quite incredibly, within a couple of hours Mum, Dad and Phoebe were on their way home with a much better idea of Phoebe's sight issues and, more importantly, with a pair of glasses ordered and to be delivered within 6 weeks!

Back in the day when my eldest girls, both born with same condition as Phoebe, had to have glasses it was a real problem trying to find an optician that could make glasses that the girls were able to wear. Due to the facial appearance of people with Stickler Syndrome...the face appears flat and there is often little or no bridge to the nose to hold glasses in place...my girls had to endure wearing glasses that were specially made. The glasses were cumbersome and looked different and many times I was told that my girls were wearing their glasses upside down when, in fact, they glasses were made that way because it was the only way that they would stay on my girls noses. Some people!
The fact that Mum and Dad had been able to pick out a frame for their daughter that didn't need to be specially made was such a relief to me. I was dreading Phoebe having to try to wear glasses that were heavy and uncomfortable. I know from personal experience how difficult it can be as a parent to battle with your young child to get them to wear glasses and/or hearing aids when they really don't want to and Phoebe had been prescribed glasses at a younger age than her Mummy was. Her visual impairment is such that she needs to wear her glasses all the time. Keeping glasses on a cheeky 7 month old girl might be quite a challenge methinks. She has already managed to take them off umpteen times when no one's looking...especially when she is in her car seat!

Anyway, fast forward a week or so and I am visiting my daughter and the twins. Above their letterbox is a package that my daughter didn't know was there. In the package was a the dinkiest pair of glasses I have seen. Yes, Phoebe's glasses had arrived much quicker than expected and I was going to be able to see her put them on for the first time. What a privilege and how exciting!
Of course, young Phoebe decided that she wanted an extra long sleep so we had to wait for what seemed like ages for her to wake up but eventually we heard her chatting away so Mummy went and picked her up and put the glasses on her.

And what a difference. Straight away Phoebe was still. She stared at everything. She didn't  make a sound. She was completely absorbed in what, to her, were her new surroundings. It was wonderful to see her. It was obvious that she was already seeing things that she had never seen before. Of course, this soppy Nanny got a bit tearful again but it's such a huge, huge thing for Phoebe and her family and I can absolutely understand the enormity of that moment because I have been through it with two of my girls and their eyesight is not as affected as Phoebe's.

So, there we are. Another momentous moment for Phoebe and for her family. Another batch of wonderful memories made for me as a Mum and a Nanny. We have also had Poppy's 6th birthday, I've got tickets to see Frank Turner in December, my daughter has got another job and has been making wedding invitations and there is another birthday tomorrow when my eldest girly will be celebrating her 33rd birthday and her first as a Mummy. My goodness, time flies and aren't I just the luckiest person?

Much love

xxxx