September
41 days to go!!!
1st September - It's 41 days until we will be celebrating Mayas 3rd Birthday!! I can not believe it and even more so I can not believe how far we have come!!!
Guess what it also means its just 41 days until the PGER run!! Mayas 'training' is going well! shes picking up speed and confidence in her 'hot wheels' and is starting to master maneuvers crucial for crowd dodging!! :-)
Some pictures to follow shortly!
Guess what it also means its just 41 days until the PGER run!! Mayas 'training' is going well! shes picking up speed and confidence in her 'hot wheels' and is starting to master maneuvers crucial for crowd dodging!! :-)
Some pictures to follow shortly!
Pre-school!
Today is also Maya's First day in pre-school! My baby girl is definitely no longer a baby!! We are so proud of everything she has become and we are so excited to see what the future holds! If she can overcome all she has in her short 3 years in this world the sky isn't even the limit to her future.
First pre-school picture:
First pre-school picture:
Maya brought this picture home for us from her 1st day at pre-school!
Mayas Throne
Today Mayas OT also dropped off her new toilet equipment. Hopefully this wil lgive Maya the support for her to feel comfortable whilst on the toilet and get her use to sitting on the toilet. We will be able to do her catheter care while she is sat on the toilet and once she is comfortable using it we will be starting a bowel management programme too.
Train World (Peterborough)
We had a great day out at train world today. We al lloved it! Strongly recommend. Great for all ages and easy accessible.
Ferry meadows fun
Ride on the train
This is fantastic!! Its a ride on train powered by a little steam engine that goes from the main centre at ferry meadows up to the boating lake and back. What makes it even better is that they have a specia ladapted wheelchair/buggy carriage with ramp so children and adults can ride on it without havingto get out their chair. Fantastic if you ask me!! :-) Great day for all the family!!
Baking cookies
17 DAYS TO GO....
What a great way to start the day off... finding a picture of us with Benny bear at the SHINE charity family opportunities weekend, Coventry whilst drinking my morning coffee! Only 17 days to go until the Perkins great Eastern Run - Peterborough. Here is a picture!
Newspaper coverage in the Peterborough telegraph today! :-) Please Show your love and support for Maya at: www.justgiving.com/mayaswonderland
Film Night
Dancing to 'It's a whole new world!'
Home picked fruit from the garden
Hospital Again
Maya was admitted to Peterborough hospital again on the 12th September due to a severe urine infection causing an increase in prolonged seizures as well as causing really bad floppiness especially to her legs. Thet took her to theatre as they couldnt get access to give her medication and attempted long lines under general anestetic. Unfortunatly they failed but secured 2 canulas for short term use. They stopped working by the second day and she was give Intermuscular injections for her antibiotics. Luckily she picked up quite quickly and we were home in a few days. She also had an ultrasound on the 18th to check her kidneys and bladder over. Some positive news in that the indwelling catheter is doing its job but her kidneys are still looking in a bad way. Need to wait to see her consultants now for more information.
Paper coverage for PGER
Here is Maya featuring in the Wisbech standard and cambs times raising awareness and funds for SHINE charity and Spina bifida and Hydrocephalus. Please click on the picture to go to the website article.
Here she is again featuring in an article for SHINE
Spotted by a friend in Peterborough! Come join us and run for SHINE :-)
Neurosurgical Appointment
We had an appointment at Addenbrookes to see Mayas Neurosurgeon today (21st September) The appointment went well although a little deflated. She believes Maya is possibly showing signs of tethered cord but would not want to act on it at present. We will keep a close eye on her and basically when it comes to a point that the benefits of surgery out weight the risks then it may be performed but as Maya has limited function anyway it is more a case of managing symptoms instead of surgery.
New Wheels!!
Firstly I would like to say a MASSIVE THANK YOU to a special little lady called Cloe and her family!! They are amazing and so kind. Cloe made the decision to do something great for Maya and has leant her, her wheelchair that she has now grown out of. We are completely overwhelmed by this wonderful gesture and we can not thank the whole family enough. Cloe and her wonderful family came to our home with the wheelchair and Cloe showed Maya how to move her wheels like a pro!! As you can imagine I was in complete floods of tears!!! Here are a few videos of Maya learning to use 'Hot Wheels' ;'-)