Author: katherineambos

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.

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. 

Madison woke up this morning feeling a bit better then yesterday. Her muscles were sore and she was still exhausted from the week, but she seemed more herself. She had her bowl of Cheerios for breakfast, chased Stitch around the house and helped Auntie Em blow dry and brush her hair. Auntie Em and Mommy decided to get everyone out of the house to get some fresh air so Madison went shopping. She checked out all her pet friends at PJ’s Pets and was sad to hear that the store is closing soon. She checked out some Blue Jays gear and new hair clip and then was on her way home. She slept for almost 3 hours, got up and had a play date with Jacks new buddy Avery and then went out for dinner. After about 30 minutes at the restaurant, Madison hit the wall and went downhill fast. As soon as everyone walked in the door she went straight to bed with a fever. Hopefully she will get a good sleep and bounce back tomorrow. 

For those that don’t know, Choo Choo is Auntie Em’s nickname for Madi…because she’s the Little Engine that Could.. I think I can, I think I can, I think I can…

But this little engine was in bed early…..completely exhausted……sore……and with a low grade fever.

Madison’s teacher wrote in her take home journal that after gym this morning she was tired. She put her head down on the table at snack time and said “I’m tired!” And then didn’t do much for the rest of her time at school. She went to Nana’s house and had a good sleep and a big lunch. Madison and Nana played her favourite games with her kitchen and play food, listened to music and took it easy. She was not herself all day.

Auntie Em came over for dinner and a sleepover but barely saw Madison. The second she was done her dinner she asked to go have a bath and go to bed. She was in bed early, sweaty from her temp and complained about everything being sore and hurting.

CP FACT:

“Over 50 percent of people who have cerebral palsy experience post-impairment syndrome. This means that you may experience a combination of fatigue, pain and weakness. All these symptoms are likely to be caused by bone deformities, muscle abnormalities and arthritis. People with cerebral palsy use up to 3 to 5 times the amount of energy other people use when moving around. So it is oftentimes very difficult to function properly at work or in school.”

Madison had her usual busy week with school and one type of therapy each day. With the addition of the school field trip with all the walking, and now all the walking she is doing to and from school… The Little Engine that Could is burnt out…this weekend will be full of cuddles with Auntie Em, down time, lots of muscle stretches and massage and hanging out on the couch.

Madison and her class went on a field trip today to a grocery store. For the last two weeks they have been learning about grocery stores and have been doing activity and play centres with the grocery store theme in their classroom. Today was the first time she went outside with her class in her walker. This is the email and pictures we received from her teacher after the trip:

“Madison did an INCREDIBLE job on our grocery store field trip. She managed to walk all the way there, maneuver in the Loblaws independently, and half way back before she tired out. On the way there, we saw a few puppies being walked, heard lots of noisy trucks, and saw the escalators go up and down. She made many people turn heads and everyone that she encountered cheered her on. She was the proudest I’d ever seen her, and she was very excited that we bought lots of goodies to eat upon our return.

You both have raised such an amazing little girl. ”

We were so proud of Madison and excited for her to feel so independent and proud.

Madison spent her afternoon with Janine and Suzanne. She walked out of school all the way to Suzanne’s car and had a great nap. She was happy to have lunch and watch skating again at the Granite Club. After some fun, she went to work hard with Monika at March of Dimes. She worked on her upper body strength, independent standing, walking and straddle sitting. 

On her way home, Madison went to Daddy’s new office for the first time. She had been asking about his new job and wanting to see it for weeks. 

Madison had a great ride with Joe today. It was cold outside so they stayed in the indoor ring. She worked on telling him to stop and go. She also lied down on him and sat up several times to work on her core and her trust and confidence in him. Madison also had a big cheering section today – thanks to everyone who made the drive to watch Madison and her buddy Joe! She was tired today and needed more support then usual to stay upright but she got a great inner thigh stretch.

Madison has become extremely comfortable with her little silver walker. Her larger walker with swivel wheels was modified a few weeks ago to provide less support for her as was originally needed. It has been sitting in the dinning room and only used a few times as Madison is more interested in the silver walker. Tonight as Mommy was cooking dinner Madison was playing and exploring with the bigger walker. She started yelling “Mommy I want to go fast!” And then started trying to run with it around the house. After dinner she wanted to try it outside. Madison zoomed up and down the sidewalk smiling and laughing while she chased Carter. The bigger walker requires similar control as the silver one, but it is much smoother with the swivel wheels which also makes it trickier to steer and control. The highlight of everyone’s day was watching Madison walk on the grass for the first time. She has been on grass with the help of others to walk or sit and play, but at 2.5 years old she had never been on grass by herself walking …and she loved it!!! She was so proud of herself and she didn’t want to stop. With this new discovery and confidence Madison is going to have so many more adventures this spring and summer!

Madison was proud to share her journal from school today. Her teacher wrote that she used her big loud voice all morning and even asked her teacher to sit on the couch with her so she could read her a book. 

Madison had a great afternoon with Grandma, Grandpa and Stanley. Her big girl bed was repositioned so that she can climb in and out of it independently. She practiced going in and out while Stanley supervised. 

With Botox scheduled and it being just over 2 weeks away, Madison is trying to get in the routine of stretching at least three times a day. Mommy and Daddy have spoken to her a lot about the importance of stretching so she has been heard several times saying “guys I’m stretching” or “I’m going to stretching now”. When Daddy got home from work tonight Madison was with Emily in the basement. She heard Daddy and yelled up the stairs “Dadda I’m stretching!” Madison did a great job with Emily. They walked in her harness and used her gators to stretch out the back of her knees. She collected balls from all over the room to practice walking and squating while picking them up. Its an excellent activity for Madison to walk and try and do different things using her hands instead of having to use her hands to hold onto something. Madison also practiced sitting on the foam roller. All during her bath and at bedtime she talked about Emily and having fun in the basement – thanks Emily!!

Madison did lots of walking with Nana and Papa this morning. She walked all around the house and walked all the way to Kingston road and back in her walker. Madison’s endurance has really improved in the last few weeks. Now with the nice weather she will be able to get lots of practice outdoors.

Madison also visited the store to look for mats for her new van. She walked up and down the aisles for 20 minutes and then found the perfect mat to go underneath her walker to hold it in place in the back of the van. 

Nana helped Madison practice drinking out of a big cup.

Mommy helped Madison walked using keys and no hands.

Madison and Jack played with Pam and Medford this morning while Mommy and Daddy drove to Cobourg to pick up the new family van. Madison played with her favourite pink ball and helped Medford fill the bird feeder for the birds watching in the trees. Madison did a great job walking to their house and back in her walker.

Mommy and Daddy brought home the new family van this morning. The van will provide endless possibilities not only for the family, but for Madison and whatever her needs will be. There is plenty of room to safely and securely fit both her walkers, her canes and the stroller. There is room for other passengers as well as the two car seats. The door is lower on the sides where Madison can enter. With a step stool she will be able to enter and exit independently. There are also plenty of tie down hooks on the floor for any other equipment she may need in the future.

Before bed, Madison read herself some books in her new floor chair. She has been using it to sit with straight legs to get a good stretch before bed.