This morning Madison played hookie from school and went to her first botox clinic at Grandview. When she arrived they were with another child so she played in the waiting room and walked around with Daddy.
She knew something was different about today from the minute we got there…smart little cookie
After a few minutes of playing her physiotherapist Kate and another therapist Marge picked her up and off we went. Dr. Mason observed Madison play and move, assessed her flexibility/range of motion, reviewed her hip xray’s and mri reports and then discussed his opinion for botox. The goal with the botox injections is to reduce spacticity and relax the muscle groups targeted. He felt the best treatment at this point was to focus on Madi’s hamstrings and calf muscles to address the high tone and see what the botox can do for movement involving those muscle groups.Madison played with Kate while Mommy and Daddy discussed the procedure and signed some forms.
We then moved Madison to a different room to lie her down on a table face down. The two therapists held her still while Mommy and Daddy stayed by her head to talk to her. The doctor used an ultrasound machine to guide the needles into the correct muscle locations. All of the injections took a total of 4 minutes. Madison was a trooper. She cried and screamed “all done” several times and after the 4 minutes was up she rebounded, calmed down and was herself again by the time we left the building. The botox will take 2-3 weeks before we see any sort of results. Until then she is to keep doing all her therapies and as much activity and stretching as possible as her legs will be a bit weak over the next few weeks. It was also confirmed today that Madison will need a new pair of AFO’S. With the combination of her growth and change in tone from botox they would like her AFO’S to fit her better then they are now. We booked an appointment to have a re-assessment and possible re-casting a few days before Christmas.
On our way home we stopped at the grocery store to pick up some ice cream and some big girl pull ups. Madison was already back to herself again.
After a well deserved nap and lunch Madison was off to March of Dimes to hang out with Monika for Conductive Education. She did a great job! She worked on all kinds of activities in a seated position, standing against the wall bars and building a tower, walking with ropes, walking in the parallel bars and squating to pick up different vegetables, independent standing on each letter in her name, and some fine motor skills of squeezing clothes pins and peeling cabbage. We were so proud of her for working so hard after such a long morning.
After a long day, we received a late night phone call from Madison’s Neurologist Dr. Cooper. She was calling with the results of Madison’s MRI. She will be sending all the scans and report tomorrow but here is the coles notes of what she reported to us:
- The MRI confirmed evidence of damage to the brain
- The damage is deep in the centre part of the brain in the white matter along one of her ventricles.
- There were signs of increased flare and brighter signals showing around the ventricles in the centre of the brain which is most vonerable during premature birth
- The specific section of the damage is located in the motor planning area of her lower limbs which causes delayed muscles in the legs
- No grey matter is damaged
- The location of the damage on the ventricles indicates blood supply damage in the motor area
- The damage is not impacting other cognitive abilities such as intellegence/thinking, speech, memory etc.
- The bio – chemical makeup of her brain is excellent
- The anatomy and function of her spine is excellent
- The above findings confirm her diagnosis of CP- spastic diaplegic
- All reports will be sent to her pediatrician as well as her team at Grandview and the CP- Net research project
- We do not need to see Dr. Cooper again unless anything comes up
- Treatment will continue as we have been doing with the possibility of discussions of appropriate surgeries as Madison approaches the age of 4 also depending on the success of the botox treatments over the next year.
Time for bed