September
Nursery
Maya ha moved up in to the Hedgehog room at nursery and is getting on really well. 'Ka-Ka' (Karen) Maya's 1:1 key worker has moved rooms with her and she has settled really well, enjoying the new toys, new faces and new found freedom to explore. Kerry (Nursery Senco) has also being doing a lot of work with Maya to ensure she adjust well to the new surroundings.
Things however didn't get off to a great start as within an hour of Maya's first day she had a funny do! :-( resulting in an ambulance been called for at Nursery. Turned out to just be a high temperature and a cold mixed with excitement of moving rooms. Thank heavens. A couple of days at home and she was right as rain again.
Things however didn't get off to a great start as within an hour of Maya's first day she had a funny do! :-( resulting in an ambulance been called for at Nursery. Turned out to just be a high temperature and a cold mixed with excitement of moving rooms. Thank heavens. A couple of days at home and she was right as rain again.
Fundraising for SHINE
We are also getting ready for the PERKINS Great Eastern Run next month. Where we will be running as a family (All 3 generations) to raise Money and awareness for SHINE a charity very close to our hearts, who have been there every step of the way on our journey with Maya. Please show your support and give as much as you can by visiting www.justgiving.com/hungrycaterpillars or using the link above at Donate Now! Thank you for your support.
We are also hoping to do a little bake sale at Mayas nursery and put up a display board for parents and children to read. Hopefully this will help raise awareness about Mayas condition, The importance of Folic Acid and vitamin B12 in pregnancy and to encourage people to ask questions about Maya.
We are also hoping to do a little bake sale at Mayas nursery and put up a display board for parents and children to read. Hopefully this will help raise awareness about Mayas condition, The importance of Folic Acid and vitamin B12 in pregnancy and to encourage people to ask questions about Maya.
Trip to Bolton
We've been on an adventure on the train to Bolton to see family without Daddy!! (Unfortunately Daddy had to work- Boooo!) Here are a few pictures from our visit. Was great to see everyone especially my nephew Harry who is growing up way too fast. can't believe hes already a month old. We also went to Bolton Aquarium and Maya did lots of standing to look at the fish and decided she wanted to crawl everywhere. We are getting one independent girl! :-)
Maya's Birthday
Can't believe my little girl is going to be 2!!! Party planning is in progress. :-) and what to get a little girl who has everything she could possibly need? Well we would like to encourage people if they are wanting to get Maya a little something to donate to SHINE or do something good to help someone who may just need that extra bit of help. Whether it is helping someone with their shopping, picking up some litter, donating to charity or simply just listening to someone.
Additional Care
Maya continues to work on her physio and is doing incredibly well. She is achieving things that 2 years again we didn't even dream would be possible. She has had her Orthotics appointment and we collected her AFOs on the 24th September. We have been doing loads of work with Maya to strengthen her core and build hip and leg strength with much success. Hopefully the use of AFOs will give Maya the stability and support she needs at the ankle and foot in order to stand and eventually walk. We are so proud of her for achieving this and she has worked really hard with the help of nursery, Helen her physio and us in making this happen.
Maya continues to take her anti-seizure medicine daily with great results. We are now over 4 months seizure free!! YIPEEEE!! We have a review with Dr Brown her pediatrician in a few months time but so far so good. This has enabled Maya to progress in so many ways and her development is incredible. Having a well Maya has also taken a lot of stress from us as her parents and although she still may have them we are able to finally relax a bit.
Maya's shunt continues to work well and we have not had any problems with it. She is not due for review by her neurologist until next year.
Maya has also been UTI free this month and still isn't cathiterized. She remains on her prophylactic antibiotic which seems to be doing the trick and she is continuing to drink lots of water and less milk aiding her kindney function. We are due for Mayas Urodynamics to be retested in a couple of months and a reiview with Dr Sansome and Dr Alslam in the next couple of month.
Maya continues to take her anti-seizure medicine daily with great results. We are now over 4 months seizure free!! YIPEEEE!! We have a review with Dr Brown her pediatrician in a few months time but so far so good. This has enabled Maya to progress in so many ways and her development is incredible. Having a well Maya has also taken a lot of stress from us as her parents and although she still may have them we are able to finally relax a bit.
Maya's shunt continues to work well and we have not had any problems with it. She is not due for review by her neurologist until next year.
Maya has also been UTI free this month and still isn't cathiterized. She remains on her prophylactic antibiotic which seems to be doing the trick and she is continuing to drink lots of water and less milk aiding her kindney function. We are due for Mayas Urodynamics to be retested in a couple of months and a reiview with Dr Sansome and Dr Alslam in the next couple of month.