Wednesday, May 18, 2016

Day 18: Getting Physical

It’s so great to watch Tillery walking around our house and everywhere she goes! On April 14, 2016, just 54 days shy of her 3rd birthday, Tillery walked across the room for the first time ever. It was a moment we will never forget and one of the proudest moments we have ever experienced.

Tillery’s tumor was diagnosed after physical delays and regression she was experiencing. The tumor was putting pressure on areas of her brain that control movement and balance. At 15 months old, Tillery had trouble sitting up on her own and had almost completely stopped crawling.

After pressure was relieved through surgery and shunt placement, then chemotherapy began. A side effect of Tillery’s chemotherapy is neuropathy in her legs, meaning numbness and tingling sensations. Add to that the fact that she had never supported weight on her legs and had low muscle tone and it makes sense why standing and walking was so delayed.

Tillery started with a physical therapist even before her diagnosis. When we were in Cincinnati, we had a PT who came to The Ronald McDonald House every week but she didn’t push too hard because Tillery was on a very bumpy road in the beginning and had a hard time emotionally. Last summer when we were back home, we were seeing her PT weekly and were making strides to get Tillery to put her feet flat on the ground while sitting in a chair and doing leg exercises to strengthen her legs. Finally, in the Fall, everyone decided it was time to step it up and we went to twice a week physical therapy appointments.

Twice a week physical therapy pushed everyone. Tillery has been dealing with a combination of pain in her legs mixed with being a stubborn two-year-old. She has often whined “No, Miss Laurie” when she didn’t like the suggestion of play. She has refused to move and stuck out her bottom lip many times on Monday’s and Thursday’s. She cried so much we would pull out a box of tissues when we pulled out her braces.

Finally, we are there! She’s doing it! In fact, we have now cut back to only once a week physical therapy and most of that time is spent showing Miss Laurie all the cool new things Tillery is doing.

Today, Tillery insists on walking everywhere. If I try to pick her up, she fights me. Her walk is still stiff and her balance isn’t wonderful. She takes medicine to counteract the neuropathy. She still falls often and when she does she cries for a long time. When she hits her head, we watch her like a hawk to make sure nothing has happened other than a minor bump. In a way, we are all still learning.

Here’s a link to a blog I wrote about taking her out with her equipment for the first time. It was shared by an awesome site that is a voice for those with special needs.…/taking-my-daughter-with-hydrocephal…/

Here are some pictures of Tillery’s journey with physical therapy.

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