Month: August 2016

Mommy is off to Brazil for 8 days to coach Ruby! She is going to miss everyone so much but is excited to meet other synchro coaches and AWD swimmers and bring lots of good info back to share. Madison will be busy with camp this week and lots of time with family and friends. Daddy will try his best to keep up with the blog so please send any photos to him. Thank you everyone for all the help!

​​

Today Madison spent the day with her buddy Tiffany who she knows from pre-school. Tiffany and Madison love spending time together and today they went to the zoo.

“Madison went on the Carousel twice as soon as we got into the zoo. She sat on two different monkeys. Then we made our way to see the Pandas. There was a long line for the pandas. Along the line there were different exhibits and information booths for the pandas so Madison explored the different booths with her walker. Madison loved watching the pandas eat and play, she didn’t want to leave. After the pandas, we went to see the penguins. We watched the penguins swim under water. Madison was very excited when the penguins swam close to the glass. We also went to see the polar bears and the gorillas. Just as we were about to leave Madison said she wanted to go on the carousel again and the splash pad. Madison went on the carousel 3 times in total today, each time on a different monkey. Unfortunately when I went to change her for the splash pad her legs were very stiff. She was in a lot of pain no matter which position she was in. Even though she couldn’t change, Madison still wanted to play in the splash pad. So we played at one of the small fountains, putting just our hands and feet in.”

Thank you Tiffany for a great day! Madison was so happy when she got home.

Madi & Jack enjoyed a family BBQ to visit with cousin Meredith who is visiting and to celebrate cousin Adams graduation. They played with Nate and Molly in Aunt Janine’s backyard in a tent and played with dolls and puzzles and watched the puppies run around the yard. Madison also showed off her awesome walking she has been working so hard on. She was so proud! Visiting with family and eating good food was a nice way to end a busy week. 

Thank you Aunt Nadia and Uncle Mark for the gifts from Cuba!!

The kids also had a special surprise… Aunt Janine and Uncle Lou gave all the kids NASA Space suits from their recent travels. They all loved them and they make the perfect Halloween costumes! Thank you!

Madi and Jack started their day by going back to Grandview. Jack had a quick stretching session with Kate which is always a scream fest – but sooo good for his neck muscles. Madison’s referral for Botox went through and she had a check in this morning to assess her muscle catchments, range, extension etc. The good news is her catchments have stayed consistent and her range after the catchment can still happen. Her hamstrings are still her biggest enemy. They showed a few degrees less today with range. It’s a tricky battle between the Botox being gone now, a growth spurt and spastic muscles. Her third round of Botox has been booked for the end of September and a new block of therapy starting shortly after. They will also do another set of hip X-rays to keep on track with monitoring once a year to look for migration/change. 

After a great assessment at Grandview, Madi and Jack hung out at Nana’s while Mommy ran errands for Brazil!

March of Dimes posted some great pictures of Madison from their summer camp this summer. Madison attended 4 weeks of camp and loved it!

Before the end of the day, both kids had an appointment with Dr. Aref their pediatrician. Jack had his ear checked and all his draining issues have cleared up. He now weighs 21 pounds. Madison has grown 2 inches and weighs 29 pounds! It’s crazy to think that they are about 2.5 years apart in age and only 8 pounds apart in weight. Madi had not been to see him in a while so we had lots to discuss: digestive issues and upping her laxative and introducing flax seed and fish oil, magnesium and more fluid intake throughout the day. We also discussed SDR and he has sent a referral to a neurosurgeon to see if they will even see Madison. Madison will also be referred to an ENT to assess how her overflow of tone is affecting her vocal coards and “creekiness” sound in her voice. 

Madi & Jack spent their morning with Pam and Medford while Mommy took some much needed Mommy time and got a hair cut. Madi showed Pam her new bear puzzle and played with Jack and his toys. They had a great time and didn’t want to leave. 

Later in the day they visited Grandview to see Kate. She had a table with different activities all set up for Madison so she could play and work on her fine motor skills while Jack had his stretching session. Mommy and Kate stretched Jacks neck for about 20 minutes while Madi played . The whole stretching session was noisy with screaming and Madi was a great big sister and kept repeating “it’s ok bud, it’s ok Jack” while she played. 

On their way home they stopped off to pick out a new backpack. Madi starts her second year of pre school in a few weeks and decided she wanted a new backpack for a new year. After narrowing down many choices she chose a unicorn with matching lunch bag. She named her bag Joe. 

Madi and Jack had a visit with their orthotist today. What was meant to be a 45 minute appointment for two ended up being 1 hour and 40 minutes of trying to play and distract and entertain. It also meant Madi missing her ride with Joe today. The good news is that Jack got his helmet adjusted to fit over his eyes better and Madison’s straps on her AFO’s got replaced and they put new padding in them to be ready for back to school in a few weeks.

On their way home, Madi and Jack stopped by Nate’s house for a quick play. They re-arranged uncle Marks rocks in the backyard and filled the water table using the hose.

Madison ended her day with a great session with Emily. They walked up and down the street to practice in her walker. She also practiced her walking in the backyard using her ropes and she got a great stretch with her Gaitors while they did a puzzle and played with play dough. Emily leaves for school In a week and Madison is going to really miss their time together. We are so excited for Emily to start school for physio and are so grateful for all of the time and support she has given Madison. Good luck at school Emily!!