Update

Today was Leah’s MRI. The images showed that the swelling caused by radiation has decreased, but no change in the size or shape of the original tumor. We may see changes from radiation up to a year from now. She’ll continue to have MRIs every three months.

Even though the swelling has decreased, the dizziness remains a problem. We had the dizziness under control for a few weeks this summer, but sadly it returned this past Monday. She had to start taking a small dose of the oh-so-dreaded steroids again this week. Hoping to taper off by next week. We are also looking into Vestibular Rehabilition Therapy. It is an exercise-based therapy that trains the brain to use other senses to substitute for the deficient vestibular system. This may be a drug-free approach to reducing and managing the dizziness. Dr. Rush is helping us locate an expert in this area, and we hope to have more information next week. 

We also checked-in with Dr. Ritzman this week. Good news is that the shorter femur has grown 15mm since the beginning of the year. We expect that the femurs will be equal in length by this time next year. The extra, unwanted bone that grew as a result of the growth plate surgery has not increased- so it shouldn’t grow anymore after this point. Leah has enough range of motion in her knee to function normally. Now, we begin physical therapy to work on walking independently and proprioception. It will take hard work, time and patience, but at some point, Leah will be able to walk independently. We follow up with Dr. Ritzman in three months. 

In the meantime, we will have physical therapy once a week and tons of home/gym exercises to keep us busy. Her lip has healed beautifully, and she is once again blessed with a thick head of hair that is growing quickly. We did a little school supply shopping yesterday, and she is looking forward to starting school soon!

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