Monday, November 7, 2011
Mayo Clinic. Post Rhizotomy. Update
By Ellen Stumbo
We had a full day today at Mayo Clinic. It has been 6 months since Nina had her rhizotomy, so she got to see the team of doctors and therapists that have been working with her now for almost 2 years! I know I say this every time, but we love Mayo! There is a reason Mayo is considered one of the best in the world.
The quality of the people that work there is the best. Nina is not simply a number, they really do care about her and our family.
We got lots of great suggestions on things to be working on. Lots of great information and referrals too. For example, Nina will be getting new leg braces. She will also be getting fore arms crutches...but now I am getting ahead of the game!
All the doctors and therapists were very pleased with the outcome from the rhizotomy. The fact that she began walking last week was the icing on the cake! Cerebral Palsy sometimes talked about in stages or "involvement." This is given using a scale of 1, 2, 3, 4. Number 1 being "mild" and number 4 being most involved. Nina's spastic diplegia fell into a stage 4, or what you might call, most severe. What her body is able to do now is incredible!
Nina had some bone contractures that seem to be resolving on their own. This is exciting because it means surgery will not be necessary to correct those in the future. We did discuss a possible surgery during the summer. Nina does have bone deformities, and these will most likely have to be fixed. In April we will do another gait analysis and decide all that needs to take place. Hopefully, by then, we will only have to do one surgery and there will be no need for muscle lengthening procedures (this is where they go in and cut a muscle, therefore releasing the tension caused by Cerebral palsy...sounds pleasant, huh?)
I have mentioned before I have a love/hate relationship with Nina's walker. I love it because she can be independent, yet hate it because she does her worst walking with it. After seeing all the different doctors and watching her gait (the way she walks) we thought we would give fore arm crutches a try. They explained it takes kids anywhere from 2 to 6 months to really learn how to use them, but the key is to use them as part of therapy and at home because they really help with stability and gait. Two therapists worked with Nina as she used them. Her posture, balance and gait really seemed a lot better! While it would be great if Nina walks without any special equipment, right now stability and gait are important. I would much rather have her learn how to walk properly, that have her walk with poor posture and resembling a T-Rex. We will see. This is all new to us!
What a privilege to work with these wonderful people at Mayo Clinic as we all work towards helping Nina achieve her best potential!
The people at the Ronald McDonald house are also wonderful people! They serve the families here. They make us feel welcomed. Really, what a blessing this place has been.