Month: May 2015

Guest blog by Nana & Grampa Gregoire

Tonight Nana and Grampa picked up Madison from daycare. We went home to visit with Carter and Stitch. Madison played in her play and go practicing holding her self up, switching hands and throwing balls at Grampa

Practicing her throw

Working hard

Madison loves to read

Pretending to be Elmo

Reading with Nana

Madison and stitch in the play and go looking through the screen outside watching good friend Medford at the bbq

Nana thought Grampa was playing too much while eating. Grampa did not agree!

Madison had a great morning at Conductive Education. She did great sitting, kneeling and walking with her push ladder. The coolest thing they tried with her today was walking with ropes. They tied two long ropes to the bars on the wall. They put Madison in between the ropes and had her hold on. She then had to walk forwards while moving her hands along the ropes. The ropes are not stable like the wall or bars so it forced her to use more core strength and balance to stay upright and secure.

The other thing that really became obvious today is that she is right handed and has a killer throw. Any ball that rolled in her direction she picked up with her right hand and threw it across the circle. Maybe she’ll be a pitcher?

After her class, Madison spent the afternoon with Janine, Suzanne and Stephanie.  They all went to the park and had a great day! Madison is so lucky to have such great support and love from family and friends.

I was so happy to hear about her love of the slide at the park. She was able to sit on the top by herself and tried to pull herself forwards to go down.

Thanks everyone for a wonderful day!

Madison had a great visit with Kate at Grandview today. She had her friends from Motion Specialties visit to repair the walker. They drilled holes in the sides of her hip guides to better fasten the waist strap. They also re-alligned the front left wheel that was loose from smashing into walls. The botox clinic reported that we will be seen for consult in 2-3 months.

Madison also received some very cool news in the mail today. She has been invited to take part in a research study being conducted to create a CP database in Ontario to look at potential causes of CP to better understand treatment options. The study is being conducted by two lead doctors out of Bloorview and Grandview, followed by a team at Sick kids. Madison will have the first part of the study conducted now, and the final part of the study when she is 7 years old. The study will involve 13 other families at Grandview,  and 850 total families Provence wide. It will involve interviews,  physical assessments and DNA testing. Here is the first part of the letter that explains more about the project.

If you have a child with CP and are interested in the project- if they were born after 2008 you should receive this in the mail.

We are happy to participate in something that will better educate others and ourselves and help find more answers for many families like ours.

There’s nothing better then feeling loved and appreciated on an ordinary day. This morning,  a week after mothers day, I woke up to this amazing home made card. I love that they made me my own unique card, thanking me for things that you wouldn’t find on a “traditional” card at the store…best morning!

These words mean alot in so many ways. When I was pregnant with Madison, I had an idea in my mind of what being a mother would be like. Some of those thoughts have stayed the same and some are very different, now raising a child with special needs.

 I have come to terms with the reality that Madison will most likely have sleep issues most of her life, not just as a baby and toddler as most parents experience. Most parents will go through the phase of 1 year of scattered sleep, but I feel for us it is unknown- and I am ok with that because the gift that Madison and I get in return with our nightly cuddles make up for the dark under eye circles and tired days.

All of her appointments and places to be can be draining,  but so rewarding. Not only is she getting the therapy and services that will make her stronger, but I feel she is learning life lessons that most children don’t experience so young. She is learning to be flexible and easy going, she is learning the value of hard work and committment, and she is learning about the importance of community.

Thank you James and Madison for your beautiful words that mean more than you will ever know.

Madison went to breakfast and the beach this morning to celebrate Nana ‘ s 60 Birthday! We all feel incredibly blessed to be able to celebrate this special birthday, and look forward to many more years of celebrating!

Madison spent most of her day with Nana while Mommy and Daddy helped Aunt Emily move. Nana and Madison had a big breakfast, played, baked cookies, read books, had a yummy lunch and a long nap.

Madison then spent the afternoon goofing around at Costco.

The adventures never stop with Madison. We decided to check the mailbox when we got home. Madison likes opening the box and looking in for mail. She pulls out whatever she finds. As this was happenning, our cat Stitch escaped!

Madison and I were home alone so we had to go on the search. Madison sat on her bike, I pushed her and off we went up and down the street looking for Stitch.

Madison has amazing eyesight. She spotted Stitch several times running under plants or bushes. She was good at pointing and yelling “Stitch, Stitch, Stitch”

We were able to corner Stitch in our neighbour’s bush. Shortly after, James and Emily got to the house and Stitch was caught and put back inside.

Madison was a great finder! Here are some pics of her and Carter on the hunt.

Since the start of Madison’s new journey, we have been blessed with a new community of people and supports that we are very lucky to have. Madison has so many people looking out for her and helping us access the best supports and opportunities to set her up for success.

Kate, Madison’s physiotherapist notified us of an opportunity to participate in an educational training weekend for physiotherapists and occupational therapists who are learning new techniques on babies with different types of motor delays. Madison will be one of the babies they will be using to teach different methods on, which is a wonderful oppertunity! We are able to give back to educate others…and its 4 days of free physio!!! It’s a win for everyone!

If anyone is interested in participating with your child, the information is in the picture below.

One of Madison’s Conductive Education Instructors sent us pictures today of some of the things they have been working on with her. It was so nice of them to send, and as you can see in the picture- she is clearly enjoying her time with them.

Today was such a great day! Madison worked so hard at her Conductive Education class and is making great growth! Her side stepping is really coming along.

Madison had a great afternoon with Aunt Janine and Aunt Suzanne which included escaping from her bed and crawling into the kitchen, a walk through the neighborhood, proper crawling and playing with Buddy. She was then off to her swim lesson.

I was so proud of Madison at her swim class tonight! No tears!  Ryan said they had a great lesson and when I picked her up at the end she said “bubbles” and put her face in the water to show me what she worked on. She was so proud! I scooped her up and off we went to change. As I was drying her off I noticed something green.  She somehow smuggled a frog out of the pool and wanted to take it home with her. The best part was she blew Ryan a kiss at the end of her lesson and gave him a high five. Such improvement!

Madison had a great afternoon at Grandview visiting with her PT Kate. She worked on her core strength by sitting and rolling side to side on a ball. She worked on her transition from sitting to twisting sideways into a crawl position. She worked on crawling to stairs and then pulling herself up the stairs and she worked on walking in her walker. Kate was very impressed with Madison’s rapid increase in both core and upper body strength over the past few weeks. Madison’s referral for botox treatment with Grandview has also been filed and we are booking a repair for her front wheel on her walker that will hopefully get fixed next week. Overall, we had a very productive visit.