Author: katherineambos

Madison was very excited this morning when she woke up! Today was her brothers baptism! The extent in which she understood today was: it was a special day for Jack, she would see lots of family to have a party, the baptism was at her church, the priest would put water on his head, the water meant Welcome to the church. She was proud to share those facts with others. 

Madison did a great job visiting with everyone and had a fun time playing with all the kids in the basement after some cake and other desserts.




Thank you everyone for celebrating Jack and joining us today!

Madison had a super long- but awesome day! She spent her morning running errands and doing some shopping with Uncle Barker and Zoey! 

She then went to the zoo in the afternoon to visit with the gorillas, giraffes and zebras. 

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Mommy, Daddy, Uncle Barker and Zoey attended Madison’s friend J.R.s ‘Life Without Limits’ party to raise awareness for CP and to celebrate his successful SDR surgery and raise funds to help support J.R. And his family. It was amazing to see a room filled with people wearing green ribbons and to see what his family and friends hosted for him. They had a live band, silent auction and 50/50 and some amazing door prizes. It was an amazing celebration, for an amazing little boy. 

Madison and Stephanie had a great physio session together at VV today. Madison showed Stephanie her new hinge straps on her AFO’s. Madison’s independent steps have changed since the straps were added and now that her Botox is in full effect. She is not able to do as many steps and doesn’t seem to have as much control and strength as she once did. Stephanie and Madison did different activities to try and problem solve around the change. Stephanie tried having her walk with the straps on and off. It appeared that Madison was more successful when the hinge was open. Everyone will continue trying different combinations over the next few weeks to see what is best. 

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Madi and Ryan had their first fall class tonight. Madison was thrilled to pretend to be a mermaid and kick. She also was proud to tell Mommy that she did bobs and liked blowing bubbles. She also walked up and down the ramps. She had an excellent first class back! Thanks coach Ryan!

Madison and Jack were up bright and early for a day full of appointments. They ate their breakfast and were out the door at 7:30. Their first stop was to see Eric. Madi needed some work done to her AFO’s and Jack needed his helmet adjusted.

Jack has had another reaction to his helmet. He has an infected hair follicle so he is not to wear his helmet for a few days until the swelling goes down all the way. His helmet has also been turning on his head, so Eric added some new padding to try and stop it. Eric also used the camera to re-measure Jacks head to see what changes have happened to this point. We should have the numbers in a few days. Once Jack was finished with Eric, Madi and Jack left to get some breakfast and run some errands. 

After a while, they went back to Eric’s to pick up Madi’s AFO’s and to review the adjustments made. Eric added stretching straps to the AFO’s to give her heal cords and calfs a good stretch. He also added a strap to the back to lock up the hinge so that her feet stay in proper alignment to protect the tissue on the bottom of her feet from shifting to incorrect positions when transitioning from the floor to standing and walking. 

It was then time to head to Grandview. Jack had the first appointment. He did some tilting on the ball and in front of the mirror to strengthen his neck muscles and he also got a good neck stretch.

Madison worked with Kate on some new stretching activities to activate and strengthen her dorsiflexion in her feet as well as a bridging activity to strengthen her gluteus. They finished by practicing some walking and learning transitions to sit on the potty independently. 

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We have a lot to be thankful for this Thanksgiving!

7 months ago, Mommy started some reading and research on a surgery called SDR that seemed to keep popping up on different CP websites, Facebook groups and CP blogs. It caught Mommy’s eye because it seemed to be best received by children displaying similar challenges as Madison and was most successful with children who have CP-Spastic Diaplegia, which is the same diagnosis as Madison. SDR stands for Selective Dorsal Rhizotomy. 

 SDR involves sectioning (cutting) of some of the sensory nerve fibers that come from the muscles and enter the spinal cord. 

Two groups of nerve roots leave the spinal cord and lie in the spinal canal. The ventral spinal roots send information to the muscle; the dorsal spinal roots transmit sensation from the muscle to the spinal cord. 
At the time of the operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining electromyographic (EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity.

In the spring of 2016, Madison started displaying increased spasticity, her gait became more crouched and some deformities in her feet/toes started to show. Although she was always showing progression and excellent response to her various therapies, Mommy and Daddy were aware of the changes and had always been looking for other opportunities of how to help Madison and provide her with the best quality of life possible. 

Dr. Park has given Madison an amazing gift.

After months of research, seeking help from other families walking the same path, appointments, x-rays, video analysis and application forms…Madison has a special message to share with everyone.

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Please check back and follow us daily to see how you can help support Madison in her journey to St. Louis. Madison will have a Go Fund Me page that will be launched soon and various fundraising events…stay tuned!

Madi had a great morning at school. She is asking good questions to problem solve and has enjoyed the different painting activities at sensory time. Today she did a great job using her loud voice to ask for more snack. 

Madison is also proud to be a representative for the amazing organization “Three To Be” for children with neurological disorders. Mommy finally saw the new page that is up today. 

Jack had a check in with his orthotist today. His head has grown and has shown some change in shape. His helmet was adjusted, but he will be returning on Tuesday to get another scan done to see the percentages of change to decide on the next decision with the helmet. He has been tolerating his helmet really well. His neck has also become stronger and he also has more range and rotation from all his stretching. 

Jack continues to be on the move! Today he loved trying to walk between furniture and climbed over and under things at Nana and Papas house. 

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