May
A busy month...
Taking Folic Acid 3 months before trying for a baby and throughout early pregnancy has been proven to significantly reduce the risks of your baby developing a neural tube defect such as Spina bifida in the early stages of pregnancy. Although it is not guarennteed to work why risk it for one small tablet and a high folic diet. This along side vitamin B12 injections (Helped my body to absorb folic acid) during pregnancy made Max possible. Please think FOLIC before you FROLIC!!
Maya's new bedroom
Progress!!!!
What's been going on
Urology
May didnt start to well with a week long hospital admission due to increased seizures as well as a severe uti and kidney infection. We made the desicion to have Maya admitted to Peterborough hospital following severe urine retention due to been unable to intermittently cath from infection blocking her cathiters and Maya becoming increasingly unwell, off her food and fluids, severe temperatures of 39.5+ topped off with increased seizure activity and prolonged status tonic clonic seizures. After a week of IV antibiotics maya was back to her usual self and was infection free. We made the decision to have an indwelling cathiter placed with a flipflow valve fitted. This was successfully placed. Maya remained on oral antibiotics to prevent infection from this procedure for a few days. This has honestly been the best decision we have made for our daughter as she has remained infection free and subsequently tonic clonic seizure free for the rest of the month. (The longest we have been since she was 8 months old!) Having this cathiter fitted has literally changed our lives! Maya has been very well and is making progress in all areas of her development, We are able to manage her urine output much more effectively, she has been infection free, we re able to use constant drain bags when necessary to prevent/treat possible infections if they occur and Nursery and family are able to take care of Mayas needs giving us much needed support and rest. The biggest change is that Maya is able to sit on the toilet or potty to wee which is something she is very proud of and gets excited about. She has started requesting the toilet to wee and we have had hassle free 'cares' all month which compared to the screaming hysterical tantrums every cath time is amazing and making life a lot easier, calmer and we are able to go out and about more and not feel controlled by her caths! We will just have to see if Maya's new Urologist agrees with this idea to whether it becomes a long term option for Maya.
Development
We have reached big milestones with Mayas development. As you can see from the photographs she is now starting to eat with a knife and fork and is able to drink from an open cup or glass. She continues to try and eat all types of food, discovering new tastes and textures.
Maya has been making lots of progress with her gross motor skills. She is becoming increasingly confident at pulling to stand and sitting, furiniture cruising and supported standing. She is becoming more aware of her legs particuarly down to her knees and is getting very strong in her upper and lower body. Maya is starting to use her kaye walker more and although she is still unable to use it independently she is able to walk approx 15m with it and is now requesting to use it. We have been working a lot on Maya's core strength to help with her balance and improve her ability to walk and use a wheelchair in the future.
Maya has had her first Wheelchair appointment this month. She has been assessed successfully for a tiny self propelling wheelchair. She is one of the youngest children ever in the Peterborough area to be able to use a Self propelling chair independently. She took to it straight away and was 'rolling' herself round the assessment room in minutes. She has choose a red frame with black accessories and flower power spoke guards! We are so proud of her and her new 'hot wheels' should be ready in early July.
Through the exercises we have been doing set by Mayas OT/Physio at Brainwave to desensitize Maya and address her sensory issues we are already starting to see real differences. Maya has Brushed her own hair and tolerated us brushing her hair. She has started wearing hair clips, toy jewelry and haas even started to learn to brush her teeth. She has become more accepting of us touching her, holding hands and doing personal cares.
Through the use of Mayas new indwelling cathiter and bowel management programme Maya is dry and clean during the day time, using the toilet successfully.
May didnt start to well with a week long hospital admission due to increased seizures as well as a severe uti and kidney infection. We made the desicion to have Maya admitted to Peterborough hospital following severe urine retention due to been unable to intermittently cath from infection blocking her cathiters and Maya becoming increasingly unwell, off her food and fluids, severe temperatures of 39.5+ topped off with increased seizure activity and prolonged status tonic clonic seizures. After a week of IV antibiotics maya was back to her usual self and was infection free. We made the decision to have an indwelling cathiter placed with a flipflow valve fitted. This was successfully placed. Maya remained on oral antibiotics to prevent infection from this procedure for a few days. This has honestly been the best decision we have made for our daughter as she has remained infection free and subsequently tonic clonic seizure free for the rest of the month. (The longest we have been since she was 8 months old!) Having this cathiter fitted has literally changed our lives! Maya has been very well and is making progress in all areas of her development, We are able to manage her urine output much more effectively, she has been infection free, we re able to use constant drain bags when necessary to prevent/treat possible infections if they occur and Nursery and family are able to take care of Mayas needs giving us much needed support and rest. The biggest change is that Maya is able to sit on the toilet or potty to wee which is something she is very proud of and gets excited about. She has started requesting the toilet to wee and we have had hassle free 'cares' all month which compared to the screaming hysterical tantrums every cath time is amazing and making life a lot easier, calmer and we are able to go out and about more and not feel controlled by her caths! We will just have to see if Maya's new Urologist agrees with this idea to whether it becomes a long term option for Maya.
Development
We have reached big milestones with Mayas development. As you can see from the photographs she is now starting to eat with a knife and fork and is able to drink from an open cup or glass. She continues to try and eat all types of food, discovering new tastes and textures.
Maya has been making lots of progress with her gross motor skills. She is becoming increasingly confident at pulling to stand and sitting, furiniture cruising and supported standing. She is becoming more aware of her legs particuarly down to her knees and is getting very strong in her upper and lower body. Maya is starting to use her kaye walker more and although she is still unable to use it independently she is able to walk approx 15m with it and is now requesting to use it. We have been working a lot on Maya's core strength to help with her balance and improve her ability to walk and use a wheelchair in the future.
Maya has had her first Wheelchair appointment this month. She has been assessed successfully for a tiny self propelling wheelchair. She is one of the youngest children ever in the Peterborough area to be able to use a Self propelling chair independently. She took to it straight away and was 'rolling' herself round the assessment room in minutes. She has choose a red frame with black accessories and flower power spoke guards! We are so proud of her and her new 'hot wheels' should be ready in early July.
Through the exercises we have been doing set by Mayas OT/Physio at Brainwave to desensitize Maya and address her sensory issues we are already starting to see real differences. Maya has Brushed her own hair and tolerated us brushing her hair. She has started wearing hair clips, toy jewelry and haas even started to learn to brush her teeth. She has become more accepting of us touching her, holding hands and doing personal cares.
Through the use of Mayas new indwelling cathiter and bowel management programme Maya is dry and clean during the day time, using the toilet successfully.