July
1st - Today was a good day apart from 3 seizures and a grumpy 2 year old who wouldn't sleep even after rescue meds!!
Today we had 2 appointments to attend. The first was a home visit from Occupational therapy for an initial assessment. Mayas new OT is lovely and Maya took to her within minutes. She was stunned at how well Maya is developing and making so much progress in all areas. She agreed Mayas sensory issues need further work but that we are making great progress and to keep doing what we are doing. Plans have been made to address Mayas toileting needs to make the toilet more comfortable and suitale for her but other than that all is great with little need for adaptations at present. She will be visiting once Maya has settled with her Wheelchair to see if anything can be done to make har as independent as possible. All in all a great appointment.
We then had a follow up appointment with Orthotics at the Child development centre in Peterborough. No changes need to be made to Mayas AFOs/splints at the moment. Although she is externally rotating her right leg we believe this is due to muscle weakness in the hip region which can be worked on over time for the time being. More physio and exercises for the Moo Moos and more thinking up new games to play for Mummy! There has been talks of over night splinting to help with Mayas leg positioning but this isn't essential at this stage.
We also gave wheelchair services a ring today to get an update on Maya's 'hot wheels' but unfortunately we are still looking at another 2-3 weeks wait.
Starting to feel really anxious about her Urology appointment on Thursday but hopefully we get some answers and a plan with short term and long term goals to work towards. Anything has got to be better than this feeling of limbo we are currently in!
Today we had 2 appointments to attend. The first was a home visit from Occupational therapy for an initial assessment. Mayas new OT is lovely and Maya took to her within minutes. She was stunned at how well Maya is developing and making so much progress in all areas. She agreed Mayas sensory issues need further work but that we are making great progress and to keep doing what we are doing. Plans have been made to address Mayas toileting needs to make the toilet more comfortable and suitale for her but other than that all is great with little need for adaptations at present. She will be visiting once Maya has settled with her Wheelchair to see if anything can be done to make har as independent as possible. All in all a great appointment.
We then had a follow up appointment with Orthotics at the Child development centre in Peterborough. No changes need to be made to Mayas AFOs/splints at the moment. Although she is externally rotating her right leg we believe this is due to muscle weakness in the hip region which can be worked on over time for the time being. More physio and exercises for the Moo Moos and more thinking up new games to play for Mummy! There has been talks of over night splinting to help with Mayas leg positioning but this isn't essential at this stage.
We also gave wheelchair services a ring today to get an update on Maya's 'hot wheels' but unfortunately we are still looking at another 2-3 weeks wait.
Starting to feel really anxious about her Urology appointment on Thursday but hopefully we get some answers and a plan with short term and long term goals to work towards. Anything has got to be better than this feeling of limbo we are currently in!
Maya received her Birthday invite
Maya opening her birthday invite to to her brothers 1st birthday party. Excited would be an understatement!!!
Nottingham Urology Clinic
Just an update on Maya's First Urology appointment at QMC, Nottingham.
We saw Mr Williams in clinic today and we finally feel like a plan has been made to give Mayas water works the best chance. Mr Williams believes Maya does not have a typical Neuropathic bladder/bowels associated with Spina Bifida and therefore feels her care plan needs to change and treated differently.
Firstly we didn't completely mess up by requesting the indwelling cath to be put in!!! yippppeeee! (that was the thing we were dreading most!) The plan is to keep it in for a while longer while tests are ran.
Secondly, Mr williams has scheduled for a full examination and testing of maya's water works including Ultrasound scan, DSMA, Mag3 and Urodynamics.These will be all performed on the same day at Nottingham hospital and reviewed by the Urology team at Nottingham who specialise in the care of children with Spina Bifida.
Thirdly, Her reflux isn't our fault! We had been made to feel that the progression in Mayas reflux from grade 3-5 was due to us not cathiterising her for seval months due to the severe problems with UTIs and seizures. We have been reassured this is not the case and that Mayas progression would have still occured.
Forthly, Mr Williams believes valve surgery is likely in the next few months (He would like to see pressures in her bladder first) This will either be a STING procedure where her valve is injected, an artificial valve or a reconstruction valve. This will prevent and hopefully eliminate reflux from her bladder in to her kidneys. Mr Williams believes there is a small chance Maya may not need to be catheterized after this procedure and there is a very slim chance she may develop normal function after the surgery.
Fifthly, The plan is more likely that Maya will still require cathiterisation and we will retry intermittent cathiterisation and if this fails a suprapubic cathiter will be inserted with a flip flow valve similar to her indwelling cathiter. This will allow her uretha to stay strong and closed (no leakage) and limit infection in her bladder and kidneys.
Basically this appointment is all good news, a lot to take in and quite a few if, buts and maybes but we feel there is a plan and that Mayas Water works are the best hands! Happy Family!
We saw Mr Williams in clinic today and we finally feel like a plan has been made to give Mayas water works the best chance. Mr Williams believes Maya does not have a typical Neuropathic bladder/bowels associated with Spina Bifida and therefore feels her care plan needs to change and treated differently.
Firstly we didn't completely mess up by requesting the indwelling cath to be put in!!! yippppeeee! (that was the thing we were dreading most!) The plan is to keep it in for a while longer while tests are ran.
Secondly, Mr williams has scheduled for a full examination and testing of maya's water works including Ultrasound scan, DSMA, Mag3 and Urodynamics.These will be all performed on the same day at Nottingham hospital and reviewed by the Urology team at Nottingham who specialise in the care of children with Spina Bifida.
Thirdly, Her reflux isn't our fault! We had been made to feel that the progression in Mayas reflux from grade 3-5 was due to us not cathiterising her for seval months due to the severe problems with UTIs and seizures. We have been reassured this is not the case and that Mayas progression would have still occured.
Forthly, Mr Williams believes valve surgery is likely in the next few months (He would like to see pressures in her bladder first) This will either be a STING procedure where her valve is injected, an artificial valve or a reconstruction valve. This will prevent and hopefully eliminate reflux from her bladder in to her kidneys. Mr Williams believes there is a small chance Maya may not need to be catheterized after this procedure and there is a very slim chance she may develop normal function after the surgery.
Fifthly, The plan is more likely that Maya will still require cathiterisation and we will retry intermittent cathiterisation and if this fails a suprapubic cathiter will be inserted with a flip flow valve similar to her indwelling cathiter. This will allow her uretha to stay strong and closed (no leakage) and limit infection in her bladder and kidneys.
Basically this appointment is all good news, a lot to take in and quite a few if, buts and maybes but we feel there is a plan and that Mayas Water works are the best hands! Happy Family!
Maxy man's 1st Birthday
We hired a beach hut at Lytham St Annes for the day for Maxy mans first birthday. Lots of fun including building sand castles, eating ice cream, a ride on a train, BBQ and dancing.
Bolton
DLA
17th July - We have received confirmation that Maya will be receiving both Care and Mobility components of DLA from October 2014!!! She has been awarded it for 5 years! We are so happy about this and it is a massive weight of our shoulders. We are so fortunate and so grateful she will be receiving this and it will make a big difference to all of our lives and will open up a lot of opportunities for Maya. Now to start fund raising for a special car seat for her to make journeys as safe and as comfortable as possible for Maya and hopefully we can get one that rotates taking the strain off our backs lifting her in and out of the car as this is becoming increasingly difficult the older/bigger she gets especially when she is unwell or having seizures.