Day 446: So Stiff!

With Botox moving forward tomorrow, hopefully today will be the last day of intense stiffness for a while. 

The last few days Madison has been incredibly stiff. Today it impacted her so much that her volunteer at school reported that she had to help Madison with certain tasks that she hasn’t had to help with in months, like moving from sitting to standing and crawling up the stairs. Regardless, Madison continues to push through and is so determined to do things by herself. 


She did an excellent job at Grandviw today with Kate. Lots of balance work and trying to stand up from squating on the floor. Kate also measured her leg muscles and range of movement before her muscle “catch” to have accurate numbers for tomorrow morning.

Madison will also be starting speech breathing therapy during her sessions at Grandview hopefully in the next few weeks. Here is some info on issues kids with CP may have with their speech:

Speech Breathing Characteristics of CP

– More air per syllable

– Fewer syllables per breath group

– Difficulty changing / maintaining loudness 

– Shorter maximum phonation durations 

– Variable voice quality 

Madison is receiving her second round of Botox tomorrow. 8 injections spread over her hamstring and calf muscles. We have decided not to use the word “needles” or “injections” as she does not see them. She is face down for the procedure. We are telling her that the doctor at Grandview will be giving her muscles special medicine to help them feel better so they can help her when she walks. 

Day 445: New Gaitors

Madison had a great afternoon with Grandma and Grandpa. They made pigs in a blanket for lunch, did some gardening with Madison’s new tools and saw a bee.


After dinner Madison worked hard with Emily. They started by going outside to practice going on and off the grass in her walker. Pam and Medford cheered her on.


Once they were inside, the big focus was on stretching. Madison has Botox coming up in a few days so she has been stretching much more than usual. Madison’s new Gaitors came in the mail the other day. Perfect timing for all the post Botox stretching that she will be doing. We were able to get a ballerina theme with the material. The ballerinas on the Gaitors all have straight legs so it’s perfect for Madison to see as she doesn’t love wearing them. Emily read Madison different books and did different activity books to try and distract from the Gaitors. 

Day 444: Accessible Playground!

Madison went out for a delicious Mothers Day dinner down at the Liverpool waterfront. Her and Nate did a great job eating up their dinners and celebrating the special women in their lives. After dinner they went down to the beach to play on the playground. It was cold and wet but that didn’t stop them from having a great time. The best part about the playground was that it was accessible! There is a ramp that starts on the main surface and then moves over the sand and up to the different structures. Madison was able to walk in her walker right up the ramp to the slides, bridges and climbing bars and walls. Madison and Nate also had a great time on the swings. It was a wonderful way to end a wonderful weekend. Madison was so proud of herself for all of her walking and how well she did on the playground. She has already asked to go back several times so she will most likely be spending a lot of time there this summer. 




Day 443: Open House

Madison was a great helper early this morning.

Madison visited Daddy’s open house today at 43 Division where Daddy volunteers. She walked around to see all the community booths, checked out a tipi with Grandma and Grandpa, had some cotton candy, explored all the different types of police vehicles and got her face painted.


Madison celebrated Mothers Day Part 1 by going for dinner to celebrate her Godmother Emily and her Grandma. When she was done eating all she wanted to do was walk around everwhere which is becoming more and more common these days. She is also becoming more confident by trying to take some independent steps out of her walker. Go Madi!

Day 442: Date Night!

Madison had a great morning at school. Her teachers reported that she used her loud voice all morning!

Madison spent her afternoon with Nana. They worked on a special Mothers Day card for Mommy. Madison used scissors to cut different shapes to glue down to make a flower. She then decorated it with lots of glitter. Nana wrote a special message on the inside of the card that Madison traced over with a marker. Madison glued a picture of her and Jack on the inside. It is such a beautiful card – a picture of it will be posted tomorrow!

Daddy took Mommy to see Stars on Ice tonight so Papa and Madion had their own date night. Madison tried sitting in Papas van, they went out for chicken and fries, they went down to the Bluffs to go for a walk and feed the birds be then they went home to read books before bed. Madison did lots and lots of great walking in her walker today.

Day 441: Practice Makes Progress

Madison met a new friend named Pickles this afternoon. 


Madison continues to do an excellent job at her conductive education classes. She has been consistently attending once a week with Monika since September and it is really showing with all of the progress she continues to make. Today Madison made Mommy a beautiful potted plant for Mothers Day. She did lots of standing and walking and Monika stretched her out really well. 


Jack is a trooper!

Day 440: Massage

Madison had a great visit with Joe today. She practiced letting go of the sattle to lift her arms up, point at things and touch her helmet and different parts of the sattle. She now understands which arm is her right and which one is her left. Now that she knows the difference, they will include it in their instruction for leaning a certain way and turning.


Madison had her first massage session today with Shannon (thanks for recommending Jennifer!) and Madison really enjoyed it. Shannon did an assessment to see how she can best help Madison. She suggested she would treat the stiffest muscles depending on the week and focuses on Madison’s legs. She observed that Madison’s joints crack, her knees are swollen and her right leg has much higher tone then her left. She also incorporated craniosacral therapy in her massage. Here is some info on how it relates to cerebral palsy:

“CST is a treatment involving the brain and spinal cord using massage and other minor non-invasive techniques. Osteopath William Sutherland, who studied the body’s health in relation to the bones of the skull and relation of the spinal cord, invented the technique.

There are certain normal rhythmic motions felt in the body that craniosacral therapy relies on developing. The therapy is based on spinal cord fluid that encases the brain and spinal cord. The fluid moves in a certain rhythmic fashion creating a balance between the brain and the spinal cord. This rhythm is felt for on the bones in craniosacral therapy for cerebral palsy. Abnormalities can be felt in the actual bone by the therapist. According to the therapy, these abnormalities can cause the spinal cord fluid to stop flowing correctly.

Craniosacral therapy for cerebral palsy detects these restrictions and through its unique therapeutic massaging, restarts and develops the rhythms. A trained craniosacral therapist can detect abnormalities. By applying pressures to the body these rhythms can be restored to their original intents. The therapy is very minimally invasive, using less pressure than a regular massage.

Craniosacral therapy for cerebral palsy is used to help the body of the CP patient develop its own muscle and nervous systems in order to help immunize the body against further disease. CST can contain one or some of the following components: Sutural approach, meningeal approach, and reflex approach.

The therapy is seen as an alternative to other more intrusive and potentially damaging treatments of cerebral palsy. Craniosacral therapy can provide a much needed relief to damaging effects of cerebral palsy on the nervous and muscular systems.”

Day 439: Back at It!

Madison has bounced back and is feeling much better. She had a good sleep in and played around the house this morning instead of school. She went to Grandview this afternoon for her weekly physio session with Kate. They worked on her walking, squating to stand and climbing. They also did lots of core exercises to work on her abs. 


After physio, Madison stayed at Grandview to check in with her OT Kathy. Madison has not received OT in almost a year. The check in was to assess her fine motor skills, specifically her “school readiness” skills. Madison is still 16 months away from starting kindergarten, but everyone wants to take a proactive approach to teaching her the skills she will need for school as some of the skills may take time. Madison’s upper body tone has gradually reduced since she was born and now she has very good control of it so it does not prevent her from doing everyday things in her life right now. With some specific skills like using scissors, threading and using a marker to make small lines or circles, Madison has to work on learning to control her tone and relax her arms and hands to get more control over what she is doing. She also needs to work on smoother movements with her hands as right now they can be jerky at times. Madison will start a block of OT shortly to work on school specific skills and learning how to dress herself.



It was also recommended to purchase two items to help with her independence at home. She will be getting hand rails to go around the toilet for potty training and a rail in the bath tub to get in and out.

Day 438: Stiff as a Board

Madison is on day #4 of her cold. She is starting to bounce back but her leg muscles are extremely stiff. Today she had a very difficult time with her motor planning. She usually can get off the couch or climb up and down the stairs with no issues but today she needed lots of help. She had little to no strength and energy and ended up having a nap for 4 hours. The hardest part of her day was dealing with muscle spasms. Mommy kept making Madison drink lots of water and juice to help. Her feet needed to be massaged a bunch today. Her sore muscles don’t usually bother her, but today it was all she could talk about and brought her to tears a few times. It’s days like today that we all hate CP. It’s also days like today that Madison is becoming more aware of things that are challenging for her. She is extremely smart and knows what is going on. Mommy and Daddy have an appointment coming up with their social worker to discuss ways of talking to Madison about cerebral palsy and all the questions and conversations that will be coming very soon. 


Madison said that the one good part about being sick was that she could be at home durging the day with Mommy and Jack. Lots of germs were being shared today. 

 

While Mommy was making dinner Madi visited with Pam who gave her a very cool book. It’s called “the girl who lost her name” and Madison’s name is all throughout the story. She loved reading it at bath time tonight. Thank you Pam, Medford, Nicole and Jamie. It was a perfect way to cheer her up at the end of her day. 


Madison also had a short visit from Emily. They worked in the basement for about an hour to try and be active to loosen up her muscles before bed. They did lots of stretching in her gators which really helped stretch out her hamstrings and behind her knees. Madison has new gators that are currently being made to better fit her growing legs. They will be blue with ballerinas all over them. We should have them next week. 

Mommy is researching the Anat Baniel Method for therapy that Madison might try this summer once school is done. The book was delivered today and her review will be shared over the next week…stay tuned.

Day 437: Beauty School

Madison is still not 100% so she spent the day at home with Auntie Em while Mommy & Daddy had a busy Sunday. They spent the day in their PJ’s playing around the house, lounging and napping. Madison LOVED brushing Emily’s hair, putting leave in conditioner in it and styling it with lots of clips. Madison helped Emily clean up, organize and fold laundry before having a super long nap. They watched the Jays game together and Emily taught Madison a cheer they clapped to. Aunt Emily helped Madison with her ABC floor puzzle that she was super proud to show Mommy and Daddy when they got home. Aunt Emily saved the day and Madison loved every minute of their time together.