May
Well I've not been on and updated much this month as it's been a bit of a hectic one!
But in summary Maya has achieved so much!
Just some of things she has achieved:
But in summary Maya has achieved so much!
Just some of things she has achieved:
- Maya is on the move!! crawling (army style)
- Saying approx 15 words clearly
- Drinking from a beaker independently
- Drinking from a cup with assistance
- Trying to feed herself yoghurt with her spoon - managing approx. 3 - 4 spoonfuls
- Pushing up into standing in the hot tub/bath
- kneeling independently without holding on and doing 'row, row' and 'dancing'
- Exploring - Maya is starting to explore and discover EVERYTHING!!
- Throw a ball to a friend including 'dog-dog'
- Stroke 'dog-dog'
- First BBQ
- Crawled in to her ball pool and sat up to play with balls
Maya drinking her juice
Maya Crawling
Maya standing
BBQ, fun in the sun and a Visit from Nana
Hospital reviews
Urology
Maya has had brilliant review this month. Following her kidney scan at peterborough on 29th April we met with one of her urologist to discuss the results. Mayas Right kidney is working fine still with no concerns and on her left side the dilation has decreased by over half and is showing far less relux all without cathiterising. We were honestly dreading this appointment as although Maya has been weeing independently in her potty and we've had wet nappies we really thought we would be restarting cathiterising or looking at surgical options. To top it all off we have been given the all clear to hold off an her prophlactic antibiotic as she has been UTI free for several months and showing and active bladder. :-D We just need to wait and see if her urologist at addenbrookes agrees with the new plan of action.
Neurology
Mayas neuro side hasn't been quite so good as the seizures have developed to be more frequent and not temperature related or UTI related which was the original diagnosis. She has also started to have episodes of vacancy for brief periods of time (usually a couple of seconds) where she then snaps out of it and carries on playing/talking etc. On the positive, the seizures she has been having have seemed less severe and she's dealing with them really well. We haven't had to go into hospital with breathing difficulties, prolonged seizure or severe tods plesia and only had the ambulance crew out a couple of times whilst I've grown confident with dealing with them on my own with a little help from our friend midazilam. (Thank you East Anglia and Cambridgeshire Ambulance crews for your patience!) We met with one of Mayas Neuro peads at Peterborough to discuss our concerns and have decided the best course of action is to start anti convulsion medication to see if they make a difference. She has been started on a low dose of Tegretol which we will increase over time. So far so good, 3 weeks seizure free!! yippeeee!!
Eyes
Well this one was a traumatic experience!!! :-( Any parent who has had to take their child to one of these appointments or has had it done themselves will sympathize. She had a general eye test foloowed by drops in her eyes to look for damage at the back of her eyes as well as her squint (wonky eye). This appointment was important to check that Maya's vision is ok and that her sight hasn't been affected by surgery, shunt or meningitis. It is also important because vision is an early sign of shunt malfunction so if we know what her usual vision is like we may be able to detect changes early. The results from the appointment were all positive. She just has her 'wonky' eye which will hopefully correct itself in time as she is using the eye normally to see and can see things fine with it :-D
General development and Physio
We continue to work hard and really feel Maya's hard work is paying off! We have achieved so much over the past few months that we never even dreamed Maya would be doing! She has definitely proved a lot of us wrong with her determination and strength. I truly believe the sky isn't even the limit anymore!! :-D things just may take a little longer thats all! So proud of her!
She is continuing to meet all her milestones and progressing well in all areas of her development, and loving every minute of it too!
Urology
Maya has had brilliant review this month. Following her kidney scan at peterborough on 29th April we met with one of her urologist to discuss the results. Mayas Right kidney is working fine still with no concerns and on her left side the dilation has decreased by over half and is showing far less relux all without cathiterising. We were honestly dreading this appointment as although Maya has been weeing independently in her potty and we've had wet nappies we really thought we would be restarting cathiterising or looking at surgical options. To top it all off we have been given the all clear to hold off an her prophlactic antibiotic as she has been UTI free for several months and showing and active bladder. :-D We just need to wait and see if her urologist at addenbrookes agrees with the new plan of action.
Neurology
Mayas neuro side hasn't been quite so good as the seizures have developed to be more frequent and not temperature related or UTI related which was the original diagnosis. She has also started to have episodes of vacancy for brief periods of time (usually a couple of seconds) where she then snaps out of it and carries on playing/talking etc. On the positive, the seizures she has been having have seemed less severe and she's dealing with them really well. We haven't had to go into hospital with breathing difficulties, prolonged seizure or severe tods plesia and only had the ambulance crew out a couple of times whilst I've grown confident with dealing with them on my own with a little help from our friend midazilam. (Thank you East Anglia and Cambridgeshire Ambulance crews for your patience!) We met with one of Mayas Neuro peads at Peterborough to discuss our concerns and have decided the best course of action is to start anti convulsion medication to see if they make a difference. She has been started on a low dose of Tegretol which we will increase over time. So far so good, 3 weeks seizure free!! yippeeee!!
Eyes
Well this one was a traumatic experience!!! :-( Any parent who has had to take their child to one of these appointments or has had it done themselves will sympathize. She had a general eye test foloowed by drops in her eyes to look for damage at the back of her eyes as well as her squint (wonky eye). This appointment was important to check that Maya's vision is ok and that her sight hasn't been affected by surgery, shunt or meningitis. It is also important because vision is an early sign of shunt malfunction so if we know what her usual vision is like we may be able to detect changes early. The results from the appointment were all positive. She just has her 'wonky' eye which will hopefully correct itself in time as she is using the eye normally to see and can see things fine with it :-D
General development and Physio
We continue to work hard and really feel Maya's hard work is paying off! We have achieved so much over the past few months that we never even dreamed Maya would be doing! She has definitely proved a lot of us wrong with her determination and strength. I truly believe the sky isn't even the limit anymore!! :-D things just may take a little longer thats all! So proud of her!
She is continuing to meet all her milestones and progressing well in all areas of her development, and loving every minute of it too!