December
Merry Christmas Everyone!!
This year we are hoping to avoid hospital this festive season and fingers crossed if we wish hard enough get to see Father Christmas for the first time.
Wishing you all a very very Merry Chrsitmas and we hope all your christmas wishes and dreams come true.
Love Fay, Aaron, Maya and Max x
Wishing you all a very very Merry Chrsitmas and we hope all your christmas wishes and dreams come true.
Love Fay, Aaron, Maya and Max x
Decorating the christmas tree
Santa visit
We had a very special visitor last night. We had just finished decorating the tree and were sat snuggled in blankets drinking hot chocolate and watching the polar express. There was suddenly a jingle of bells and a knock at the door. Could it be true... We peered through the window and opened the door and there on our drive stood the Big man himself wishing us all a very Merry Christmas! A massive Thank you to Whittlesey Lions Club for arranging our very special guest.
A very special invitation
We had a very special invitation from Father Christmas to come and have afternoon tea with him. Here are a few of the many photos. Magical memories.
A massive Thank you to Dobbies Garden Centre, Peterborough for a wonderful day making Mayas Christmas wishes come true. Everything was just perfect and full of lots of magical memories. Thank you for also making the day extra special in helping me say a massive Thank you to my mum with a yummy festive afternoon tea. My mum is always there at a drop of hat (well a 165 mile drive!) to support us in every way when ever we need her! So thanks again Dobbies garden centre!
A massive Thank you to Dobbies Garden Centre, Peterborough for a wonderful day making Mayas Christmas wishes come true. Everything was just perfect and full of lots of magical memories. Thank you for also making the day extra special in helping me say a massive Thank you to my mum with a yummy festive afternoon tea. My mum is always there at a drop of hat (well a 165 mile drive!) to support us in every way when ever we need her! So thanks again Dobbies garden centre!
The polar express
The Santa Express
We have also had a fantastic festive tiime on the Nene valley Santa Express. A wonderful treat for all the family especially two special little boys Max and Harry who have had to go through much being the best little brother and Cousin to Maya. They have had to see things nobody should ever have to see or go through in their life time never mind at 2 years old. They have had to adapt and get on with things at a drop of hat. Many times been passed between family and friends. not sure who will be picking him up from nursery, or if Maya will still be home when he wakes up. They have had to grow up fast being accepting and patient that sometime we need to look after Maya when she is poorly, do her cares and give her the extra time she needs.
All three are absolutely train Mad and this was such a wonderful day full of smiles, gasps and happiness.
Thank you very much Nene Valley Railway, all the volunteers on the day and all the wonderful people at Wonsford train station who made this day extra special for our whole family and all your support in organising things for Maya to make her Christmas dreams come true. THANK YOU.
All three are absolutely train Mad and this was such a wonderful day full of smiles, gasps and happiness.
Thank you very much Nene Valley Railway, all the volunteers on the day and all the wonderful people at Wonsford train station who made this day extra special for our whole family and all your support in organising things for Maya to make her Christmas dreams come true. THANK YOU.
Nursery Concert
THis week was Maya's first ever Christmas concert. Last year she missed all festive occassions whilst in hospital recovering from an infection. This year she was Rudolf!! I am incredibly proud of her. She overcame so much to be there especially with a room full of people, lots of noise and lots of excitment. She sang her little heart out. THere was a little bit of the evil E rearing its ugly head but it mostly kept away and let her enjoy her day.
Spica life continues
Life in hip spica continues but its getting easier as she is in less pain and her other complications seem to be settling. We now have a hip spica chunc chair so she is comfortable when sitting and we can move her around the house without carrying her. We have also been able to take her out the house in the chair which has done alot for my sanity!! I have realised we are not a stay at home family!!!
We have also discovered Shampoo shower caps which are a god sent!!! Think we will be using them all the time even if they are £3 a wash!! We have also found positions for her to sit in on the sofa, floor etc. which is helping with keeping her busy.
She has been getting tired easily and needing to rest a lot. We seem to have got her medication and cares balanced right again to reduce her seizures, infection levels and comfort. She is now drinking and eating better although it is still a struggle but fingers crossed its enough to maintain her weight, keep her hydrated and stope her from being poorly. Her sleep has got better after starting diazopam which is helping her muscles to relax and stopping so many muscle spasms and pain/discomfort.
We now also have a date of the 29th December for review by Mr Mitchell in outpatients for cast removal, xray and a plan to be made from there. She will ten either go into cast again (possibly a different type of cast), a brace or be free.
We have also discovered Shampoo shower caps which are a god sent!!! Think we will be using them all the time even if they are £3 a wash!! We have also found positions for her to sit in on the sofa, floor etc. which is helping with keeping her busy.
She has been getting tired easily and needing to rest a lot. We seem to have got her medication and cares balanced right again to reduce her seizures, infection levels and comfort. She is now drinking and eating better although it is still a struggle but fingers crossed its enough to maintain her weight, keep her hydrated and stope her from being poorly. Her sleep has got better after starting diazopam which is helping her muscles to relax and stopping so many muscle spasms and pain/discomfort.
We now also have a date of the 29th December for review by Mr Mitchell in outpatients for cast removal, xray and a plan to be made from there. She will ten either go into cast again (possibly a different type of cast), a brace or be free.
Chicken pox
Max woke up this morning (18th) with chicken pox!!! So far in one day he has got over 50 spots!! Here's to hoping it doesn't bother him too much and that Maya stays well. We never have an uneventful lead up to christmas!!!