Maya's 12th Month
September - October 2012
Sacrewell Farm
Daddy's girl...
Another Adventure in Wonderland
A trip to York for the day to see Great Grandma turns into a 3 day holiday in York Hospital. Maya had another seizure and fever due to a UTI. Thank you to all the people who helped us and to all those who made our stay easier including Grandma, Mum and Nanny Clampit no. 2 (Jane Rushby) :-)
Home Again - Hopefully for a while this time
The Very Hungry Caterpillar
Maya Continues to feed well, She is now eating the same food as us and we have now started proper family meal times! Maya is managing her solids well and will eat cottage and pie etc. as we would eat it. We are so proud of our little girl!! The girl that 'Would' have problems swallowing and chewing is managing just fine on her own!
This month Maya has started eating her food off 'big girl' plates/bowls from her Nanna Ursula and Grandad Jim and has also managed to drink from a cup.
This month Maya has started eating her food off 'big girl' plates/bowls from her Nanna Ursula and Grandad Jim and has also managed to drink from a cup.
Maya's Meals
The hard work that goes into to feeding Maya scrumptious homemade food...
Spicy Moroccan lamb with rice, tuna pasta bake, Chicken and sweetcorn noodles,Lasagne, Cottage Pie, Chicken Dinner with mash and 4 different vegetables, Spaghetti Bolognaise, Beef Dinner with Sweet Potato Mash and 4 different Vegetables, Chicken and Sweet potato bake (Maya's favorite), Beef and Mushroom Stroganoff with Rice, Lancashire Hot Pot and Salmon Fish Pie with broccoli,
Additional Care
Maya had her first outpatients appointment to see Dr Clarke, The child development specialist. She is pleased with Maya's progress so far. (Yet another doctor who is astonished at Maya's progress and can not believe she is the little girl they read about in her file). Maya is going to be encouraged to stand and with the help of her physiotherapist we should be starting to weight bear in the next couple of months. She has also given us some tips for encouraging Maya to crawl (or at least Army shuffle Commando style) so hopefully Maya will be on the move soon!
On the 25th September we went to Addenbrookes for Maya's Urodynamics screening. Maya was cathiterised and attached to some probes to measure the pressures in Maya's bladder and bowel. Maya has a 'SAFE' bladder and bowel! Yipeeeeeee!!! :-D No more catheterizing! well at least for the time being. Maya will now be on a 6 month review to keep an eye on her bladder and bowel function but fingers crossed she will continue to do well. Maya also had a kidney ultrasound scan performed and although her left kidney shows a little reflux it hasn't increased from her last scan so is no real cause for concern but will continue to be monitored periodically.
On the 26th September Maya decided she fancied visiting York hospital whilst in York visiting her Great Grandma, Aunty Maggie and Uncle Phillip. The cathiterising from the Urodynamics screening had caused yet another UTI. It all happened within 15 minutes! I took her temperature (37.2C) as usual before putting her down for her afternoon nap to 15 minutes later I was on the phone for an ambulance because she had projectile vomited all over the bedroom, had a fever of 39C and was fitting. We spent 3 nights at York hospital in the children's ward with yet another intense of antibiotics and calpol and neurofen to control her temperature and prevent further fitting. Thank you Grandma, Mum and Nanny Clampit no. 2 (Jane) for your love and support. You made it far easier to deal with! We love you all! :-D
Maya has been fine since and fingers crossed with no more cathiterising for a while we wont have any more dramatic trips out with tours of the country's hospitals. Starting to think we should start a new branch of Trip advisor!!
On the 25th September we went to Addenbrookes for Maya's Urodynamics screening. Maya was cathiterised and attached to some probes to measure the pressures in Maya's bladder and bowel. Maya has a 'SAFE' bladder and bowel! Yipeeeeeee!!! :-D No more catheterizing! well at least for the time being. Maya will now be on a 6 month review to keep an eye on her bladder and bowel function but fingers crossed she will continue to do well. Maya also had a kidney ultrasound scan performed and although her left kidney shows a little reflux it hasn't increased from her last scan so is no real cause for concern but will continue to be monitored periodically.
On the 26th September Maya decided she fancied visiting York hospital whilst in York visiting her Great Grandma, Aunty Maggie and Uncle Phillip. The cathiterising from the Urodynamics screening had caused yet another UTI. It all happened within 15 minutes! I took her temperature (37.2C) as usual before putting her down for her afternoon nap to 15 minutes later I was on the phone for an ambulance because she had projectile vomited all over the bedroom, had a fever of 39C and was fitting. We spent 3 nights at York hospital in the children's ward with yet another intense of antibiotics and calpol and neurofen to control her temperature and prevent further fitting. Thank you Grandma, Mum and Nanny Clampit no. 2 (Jane) for your love and support. You made it far easier to deal with! We love you all! :-D
Maya has been fine since and fingers crossed with no more cathiterising for a while we wont have any more dramatic trips out with tours of the country's hospitals. Starting to think we should start a new branch of Trip advisor!!