April
We have had a very busy month this month!
Here are a few pictures of Maya enjoying herself.
Here are a few pictures of Maya enjoying herself.
Brainwave
Bolton Easter week
Queen Scout Award
What better way than to get my queen scout award on a lovely sunny day with my family around me! Thank you to everyone who has helped me in my scouting journey.
Easter Hunt
Happy Easter Everyone!
Nanna and Grandad came to visit
Lytham st Annes
Home life
Making pizza with Daddy
Whittlesey soft play
Additional Care/Healthcare
Urology
Maya has now been referred to Nottingham hospital to been seen by Mr Williams the pediatric Urologist who specializes in Spina bifida/hydrocephalus children. We just have to wait for an appointment.
Mayas recent scans/test have shown her kidney reflux to have deteriorated to grade 5 (the worst level) and the fact that Maya continues to struggle with urine infections it puts her kideneys at great risk of further damage and kidney infections.
We continue to Cathiterise Maya 3-4 times a day and sometimes at night to ensure her bladder is drained completely and to prevent as much urine as possible backflowing into her kidneys. Cathiterising also reduces the pressure in Mayas bladder and has also improved Mayas bowel function.
On a more positive note Maya is now in pull ups and will hopefully soon be able to wear knickers! She is completely dry in between catheters and is very close to been potty/toilet trained for bowel movements. Yipppppeeeee!!!! We are hoping to get a fancy superduper potty chair with padded seat, arm rest and back spport soon to help Maya become more independent with her toileting and to make her more comfortable.
Epilepsy clinic
Dr Brown is happy with Mayas progress to date but believes like we do that Mayas seizures stem from her brain becoming overloaded with information especially when fighting infections such as UTIs. We always see an increase in seizure activity around times when she has UTIs, colds, chest infections etc. He has increased her daily dose of Carbomazopine to the highest dose and hopes this will improve her seizure activity until a plan to control her UTIs is successful. If she continues to have seizures he will review her medication and we will probably have to go on to a combination of drugs to get them under control. Maya continues to buccal Midaslam as a rescue med to try and prevent status seizures. Tis continues to work fairly successfully and has allowed us to manage most of her seizures at home with the occasional visit to hospital or an ambulance as she sometimes requires oxygen to help with her breathing. On a whole these have greatly improved.
2.5yr check
On the 8th Maya had her 2.5yr review by the health visitor Nikki Clarke. She was pleased with Mayas progress and confirmed we have a very independent, bright, articulate little girl who has a loving, caring and friendly nature with a cheeky side to her personality. Maya is on target or exceeding her peers with development except gross motor skills (walking etc.)
Maya currently weighs 12.3kg and is 98cm tall. She has come a very long way from the 7lb 3 month old fragile little baby. She is exactly where she needs to be in terms of weight and is tall for her age.
Physiotherapy
Maya continues to be monitored reguarly by her Physiotherapist Helen. Helen continues to be amazed by Mayas determination which is reflected in her progress.
Maya is now able to:
Hydrotherapy
We have been unable to go to hydrotherapy much this month as Maya has been unwell with UTIs or we have been away visiting family in Bolton. Hopefully next month we will be able to get back into it.
Maya has become confident in the water. She is able to step and side step in the pool and stand with little support. She is getting the hang of floating but struggles with her head control. She is starting to learn basic swimming motions with her arms and kicking with her legs in an attempt to swim. Maya enjoys chasing Max around the pool with our help as max kicks about with a ring on and jumping in from the side. She also loves playing splash splash with her friends.
Urology
Maya has now been referred to Nottingham hospital to been seen by Mr Williams the pediatric Urologist who specializes in Spina bifida/hydrocephalus children. We just have to wait for an appointment.
Mayas recent scans/test have shown her kidney reflux to have deteriorated to grade 5 (the worst level) and the fact that Maya continues to struggle with urine infections it puts her kideneys at great risk of further damage and kidney infections.
We continue to Cathiterise Maya 3-4 times a day and sometimes at night to ensure her bladder is drained completely and to prevent as much urine as possible backflowing into her kidneys. Cathiterising also reduces the pressure in Mayas bladder and has also improved Mayas bowel function.
On a more positive note Maya is now in pull ups and will hopefully soon be able to wear knickers! She is completely dry in between catheters and is very close to been potty/toilet trained for bowel movements. Yipppppeeeee!!!! We are hoping to get a fancy superduper potty chair with padded seat, arm rest and back spport soon to help Maya become more independent with her toileting and to make her more comfortable.
Epilepsy clinic
Dr Brown is happy with Mayas progress to date but believes like we do that Mayas seizures stem from her brain becoming overloaded with information especially when fighting infections such as UTIs. We always see an increase in seizure activity around times when she has UTIs, colds, chest infections etc. He has increased her daily dose of Carbomazopine to the highest dose and hopes this will improve her seizure activity until a plan to control her UTIs is successful. If she continues to have seizures he will review her medication and we will probably have to go on to a combination of drugs to get them under control. Maya continues to buccal Midaslam as a rescue med to try and prevent status seizures. Tis continues to work fairly successfully and has allowed us to manage most of her seizures at home with the occasional visit to hospital or an ambulance as she sometimes requires oxygen to help with her breathing. On a whole these have greatly improved.
2.5yr check
On the 8th Maya had her 2.5yr review by the health visitor Nikki Clarke. She was pleased with Mayas progress and confirmed we have a very independent, bright, articulate little girl who has a loving, caring and friendly nature with a cheeky side to her personality. Maya is on target or exceeding her peers with development except gross motor skills (walking etc.)
Maya currently weighs 12.3kg and is 98cm tall. She has come a very long way from the 7lb 3 month old fragile little baby. She is exactly where she needs to be in terms of weight and is tall for her age.
Physiotherapy
Maya continues to be monitored reguarly by her Physiotherapist Helen. Helen continues to be amazed by Mayas determination which is reflected in her progress.
Maya is now able to:
- pull to stand on furniture/toy walker
- take small steps to furniture cruise unaided
- Turn round whilst furniture cruising unaided
- reach whilst standing and holding on with one hand
- Climb a full flight of stairs unaided without assistance
- Bum shuffle unaided without assistance
- Crawl up and down steps on her own
- Use a fork to eat
- Use a cup or beaker to drink
- Able to stand up against a wall/mirror/door/window
- go down a slide on her tummy or back and is nearly able to do it sitting on her own
Hydrotherapy
We have been unable to go to hydrotherapy much this month as Maya has been unwell with UTIs or we have been away visiting family in Bolton. Hopefully next month we will be able to get back into it.
Maya has become confident in the water. She is able to step and side step in the pool and stand with little support. She is getting the hang of floating but struggles with her head control. She is starting to learn basic swimming motions with her arms and kicking with her legs in an attempt to swim. Maya enjoys chasing Max around the pool with our help as max kicks about with a ring on and jumping in from the side. She also loves playing splash splash with her friends.