July
This month has been a busy one. Maya is continuing to make so much progress in all areas even with alot of hospital addmisisons, surgery and lots of change. Shes making great progress in getting ready for primary school in September too.
We had parents evening at school this month and the school seem ready for her. We also met her class teacher and her 1:1s. We think Maya is going to settle in really well and fly high at school. As usual we have added a few photos and videos to show just what Maya has been getting up to!
We had parents evening at school this month and the school seem ready for her. We also met her class teacher and her 1:1s. We think Maya is going to settle in really well and fly high at school. As usual we have added a few photos and videos to show just what Maya has been getting up to!
Orthopaedic surgery
Maya has undergone major surgery to remove the metal work that has held her hips in place since nov 2015. She has coped remarkably well with it all. The surgery has been a success so far. She will be review at the end the month to see how things are going,
For this hospital admission some little fairies had been hard at work making Maya some very special theatre pyjamas and gown. Maya absolutely loves her new pyjarmas and they helped a great deal with settling her and we even had a few smiles too! If anybody knows of a child that would benefit from a pair click on the pic below and it will send you straight to their page.
Maya has undergone major surgery to remove the metal work that has held her hips in place since nov 2015. She has coped remarkably well with it all. The surgery has been a success so far. She will be review at the end the month to see how things are going,
For this hospital admission some little fairies had been hard at work making Maya some very special theatre pyjamas and gown. Maya absolutely loves her new pyjarmas and they helped a great deal with settling her and we even had a few smiles too! If anybody knows of a child that would benefit from a pair click on the pic below and it will send you straight to their page.
Max's 3rd birthday and a week in Bolton seeing friends and family
Just a week after surgery Maya is up and about and enjoying life. Happy Birthday Maxie Man. Here's a few photos
Just a week after surgery Maya is up and about and enjoying life. Happy Birthday Maxie Man. Here's a few photos
Hospital admission for sepsis and uti
The hot weather makes managing Maya's health condition that little bit harder. it presents quite a few challenges as she is unable to regulate her temperature very well herself, she becomes dehydrated quickly, sleeps less, eats less and in turn this has a dramatic effect of her health. We see lots of weight loss, seizures, Temperature spikes, Blood pressure problems, UTIs and pressure/skin sores, We also have alot of shunt problem signs such as vomiting, headaches, sleepy/drowsyness, stiff neck, irritability and sensitive to light. Maya was admitted to Peterborough hospital for a week for observation and for treatment. Maya has now been started back on prophylactic antibiotics for kidney infections. She is also starting a new bowel regime with emphasis on getting her empty as oppose to been clean. We are still hopeful that we can get things sorted out for her starting school in September.
Whilst in hospital Maya had a visit from a lovely group of people called Children of Adam UK who were bringing in a donation of toys to the children's ward. They really put a big smile on Maya's face again and I am sure there will be many more smiles to come from all the childre stay and visiting the childrens ward. Toy donations really do help the ward create a lovely environment for children and a safe happy place away from treatments where patients can play with siblings and friends when they visit. she loved playing with all the new toys they brought for the ward especially Thomas the tank and lego. Please if you have time take a look at their facebook page (link here)
The hot weather makes managing Maya's health condition that little bit harder. it presents quite a few challenges as she is unable to regulate her temperature very well herself, she becomes dehydrated quickly, sleeps less, eats less and in turn this has a dramatic effect of her health. We see lots of weight loss, seizures, Temperature spikes, Blood pressure problems, UTIs and pressure/skin sores, We also have alot of shunt problem signs such as vomiting, headaches, sleepy/drowsyness, stiff neck, irritability and sensitive to light. Maya was admitted to Peterborough hospital for a week for observation and for treatment. Maya has now been started back on prophylactic antibiotics for kidney infections. She is also starting a new bowel regime with emphasis on getting her empty as oppose to been clean. We are still hopeful that we can get things sorted out for her starting school in September.
Whilst in hospital Maya had a visit from a lovely group of people called Children of Adam UK who were bringing in a donation of toys to the children's ward. They really put a big smile on Maya's face again and I am sure there will be many more smiles to come from all the childre stay and visiting the childrens ward. Toy donations really do help the ward create a lovely environment for children and a safe happy place away from treatments where patients can play with siblings and friends when they visit. she loved playing with all the new toys they brought for the ward especially Thomas the tank and lego. Please if you have time take a look at their facebook page (link here)
Orthopaedic Review
Review with Mr Mitchell with xrays, Dressing and stitches removal. Mayas Surgery has so far been a great success. The Metalwork has all been removed and the bone has all knitted together. The incision sites have healed beautifully in just 2 weeks despite everything that has been going on. Maya has been given the all clear to start the long process of rehabilitation with some mobilising working towards crawling, rolling and and kneeling. We hope to get some of her strength back especially her core ready for learning to transfer and eventually stand starting in 6 weeks. It is going to be a very long rehab journey with probably quite slow progress but we will never say never and maybe one day Maya will stand again!
Review with Mr Mitchell with xrays, Dressing and stitches removal. Mayas Surgery has so far been a great success. The Metalwork has all been removed and the bone has all knitted together. The incision sites have healed beautifully in just 2 weeks despite everything that has been going on. Maya has been given the all clear to start the long process of rehabilitation with some mobilising working towards crawling, rolling and and kneeling. We hope to get some of her strength back especially her core ready for learning to transfer and eventually stand starting in 6 weeks. It is going to be a very long rehab journey with probably quite slow progress but we will never say never and maybe one day Maya will stand again!
Eye Review
Maya saw her eye doctor whilst admitted on the ward. Although we have seen some deterioration in her squint repair we have been reassured this is expected. Her sight remains really good (Better than Mine that is for sure!!) She has no pressure build up and nothing new to report. They have agreed to review her annually to check her development.
Maya saw her eye doctor whilst admitted on the ward. Although we have seen some deterioration in her squint repair we have been reassured this is expected. Her sight remains really good (Better than Mine that is for sure!!) She has no pressure build up and nothing new to report. They have agreed to review her annually to check her development.