Month: April 2016

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.

Madison had a great morning at school! Her and her classmates are learning about the grocery store. They have play food and shopping set ups they have been using at school and Madison has been using a toy grocery cart to practice her walking. Next week Madison will be going on a field trip to the local grocery store to go shopping and pick out food with her friends.  

After school Madison went to Nana’s. On the way her and Suzanne spotted a pink door on a house. Madison told Suzanne it was her favourite so they stopped to take a picture in front of it.

Madison had a great lunch and nap at Nana’s house. Papa went for a visit and they all had a good play. It was then time to go see Stephanie at Variety Village

Madison had an awsome session with Stephanie. They worked on walking for the whole hour. Madison walked with Stephanie all the way from her room to the cardio room, walked on the treadmill and then walked back. She took several independent steps that Mommy was so happy and excited to see. Madison continues to work hard and push herself in all of her therapies which is so great to see. Her next Botox has been scheduled for the second week of May. This next round could be a really exciting time if all things keep moving forward with this momentum…stay tuned.

Madison walked in her walker all the way out of the building and through the parking lot to the car all by herself.

Madison had a fantastic afternoon with Suzanne and Janine. She had a nap after school and then went to the Granite Club for lunch. She had her favourite, chicken fingers and fries and watched the figure skaters while she ate. She loved watching the zamboni clean the ice afterwards. 

   
 
Madison then went to see Monika at March of Dimes. She stretched on a ball, did different activities like horse shoes while standing, practiced walking with her canes and also walking up and down stairs.