July update
We have had so much progress this month.
Maya continues to do really well at nursery and is making lots of progress in all areas. She is learning to write her name and letters of the alphabet. She is able to count to 20 and recognise many numbers and starting to write some. her pen control is coming on really well and she is able to do straight lines, circles, squares and triangles and is able to draw faces by herself all using birdie grip (tweet tweet!!). She is also becoming really good at painting and sticking, making pictures and colouring things in. Maya's speech is incredible. She uses 100s of words and is able to find other appropriate words to describe things. She understands instructions and can now complete 3 step instructions. She is making and playing with friends and will approach and speak to people confidently. she even has a birthday party to go to next month! Maya is also doing a lot more walking and standing and uses her frame a lot both inside and outside. She loves been in her wheelchair too and is getting really strong and independent. She is able to get in and out of her chair herself now and is also learning road safety to increase her independence.
Maya continues to do really well at nursery and is making lots of progress in all areas. She is learning to write her name and letters of the alphabet. She is able to count to 20 and recognise many numbers and starting to write some. her pen control is coming on really well and she is able to do straight lines, circles, squares and triangles and is able to draw faces by herself all using birdie grip (tweet tweet!!). She is also becoming really good at painting and sticking, making pictures and colouring things in. Maya's speech is incredible. She uses 100s of words and is able to find other appropriate words to describe things. She understands instructions and can now complete 3 step instructions. She is making and playing with friends and will approach and speak to people confidently. she even has a birthday party to go to next month! Maya is also doing a lot more walking and standing and uses her frame a lot both inside and outside. She loves been in her wheelchair too and is getting really strong and independent. She is able to get in and out of her chair herself now and is also learning road safety to increase her independence.
Bolton
This month we also had a trip to Bolton for Max's 2nd birthday. We caught up with lots of friends and family and had a great time. Maya even managed to walk from the car to Nana and grandads house for the very first time!! Some of the best pictures came from an afternoon at the park. We use to live round the corner from this now beautiful park when Maya was a baby. THey have spent alot of money improving the greeen spaces of bolton and have created a really great play space for children. It even has disability/wheelchair friendly things to do. I think these photos really show how well Maya is at the moment and how well her ng tube is working.
SHINE Megacycle
July has also been a busy month for us supporting SHINE! the start of the month we joined lots of people at the the SHINE megacycle at ferry meadows and helped raise over £5000 for SHINE. It was a great day and Maya wheeled most of the 3 mile route and Max walked it! The sun was blazing hot and we enjoyed the festival style atmosphere after the cycle with good music and great company. We even got to look inside a fire engine, get up close to some birds of prey and creepy crawlies and reptiles. Was a fantastic day.
Maya even walked over the finsh line with her her Oma and Opa!
Maya even walked over the finsh line with her her Oma and Opa!
Remembering a very special Lady
Today we planted Poppy seeds to remember a very special lady - Our grandma. A whole year has passed and we all miss her so much. She always had time for us, always listened and supported me so much on my journey with Maya. She would be so incredibly proud of all Maya is doing and all she is achieving.
My Skydive for SHINE
On the 25th July I completed a skydive for SHINE at Sibson airfield. It was a fantastic day with a fantastic jump team and I loved every minute of raising over £800 for SHINE charity. Here a few pictures from the day.
Family Day out
We took the kids for a family day out to Gullivers land near Milton Keynes. What a fab place. The staff were great in supporting us to access rides and have a fun day. They gave us a specific guide that had al lwe need to know about rides and facilities, they gave us a wristband with Mayas height on it so she could get on rides easily and they even gave us a pile of vip entry passes. The theme park is great for young children and Maya was able to go on just about every ride. She is a complete adrenaline junkie and thrill seeker and was shouting 'AGAIN, AGAIN' and 'FASTER!' on the biggest riddes!!! Was such a great day to see both ourr children smiling and loving life. A massive thumbs up to all the staff at Gulivers land!!
Appointments and stuff
We have had quite a few appointments this month too. The main things are:
Maya continues to make progress in all areas with her physiotherapy.
Mayas hips are displaced and she has been refered to an orthopaedic surgeon. She is not in any pain from this due to her neuroligical condition but keeping a close eye on them will be important to prevent more damage occuring at the joint.
Maya is getting a pair of KAFOs because she has made so much progress with her standing and walking.
Maya has started been able to take steps with her kaye walker again. (something she has been unable to do since october last year)
Maya has been given an EHC plan to support her at nursery and when she starts school.
Maya has received much needed equipment at nursery to help her and staff manage her needs much better.
Maya will be having surgery on her eyes in October to correct her 'lazy' eyes.
Maya continues to have her ng tube and its working really well. We have seen such a difference in her since she had it put in! we are still unsure what the plan is for the future but we are all happy with it at the moment.
Maya continues to make progress in all areas with her physiotherapy.
Mayas hips are displaced and she has been refered to an orthopaedic surgeon. She is not in any pain from this due to her neuroligical condition but keeping a close eye on them will be important to prevent more damage occuring at the joint.
Maya is getting a pair of KAFOs because she has made so much progress with her standing and walking.
Maya has started been able to take steps with her kaye walker again. (something she has been unable to do since october last year)
Maya has been given an EHC plan to support her at nursery and when she starts school.
Maya has received much needed equipment at nursery to help her and staff manage her needs much better.
Maya will be having surgery on her eyes in October to correct her 'lazy' eyes.
Maya continues to have her ng tube and its working really well. We have seen such a difference in her since she had it put in! we are still unsure what the plan is for the future but we are all happy with it at the moment.