My goal with this blog has been one post per month. It's been a challenging month for Emma and unfortunately my time and energy has been spent dealing with other things. I do have an exciting and informative blog topic I'd like to get out of my head, but it's going to have to wait until April. So March's blog is going to be more of an Emma update.
Her Neurologist ordered Physical Therapy at Children's Hospital twice a week. Her muscle pain and weakness has quickly deteriorated these past few weeks. Thankful for having an amazing team of doctors who are actively trying to help with managing Emma's pain and symptoms. She's an amazing patient though, and is determined to push through.
They have also diagnosed her with Aphasia and we are in the process of getting insurance approval for a Speech Therapist to work with her. They want to add Occupational Therapy at some point, but feel she's not strong enough now to do both PT and OT.
We received a script to get insurance reimbursement for a wheelchair...just in case we need it. This was a hard pill to swallow, but knowing that Emma could be restricted at doing or going to places she loves because of her physical limitations was harder to accept. Yesterday was my birthday and one of our favorite calming places to go is the Detroit Institute of Arts Museum. We were able to break in her new wheels...and I tried hard not to run her into the millions of dollars worth of precious artwork. ;-) We stayed hours and she had a great time. She still hurt every moment, but was able to be distracted with soaking in the beauty of her surroundings.
At the end of our day she thanked me... she thanked me for letting her use the wheelchair and pushing her for hours so she could enjoy my birthday with me.... No, baby girl...thank you. Your heart and and strength has pushed me through these past couple years.
Welcome to my daughter Emma's medical journey blog. Read updates on Emma and helpful tips for researching and coping with a child with an unspecified, rare genetic disease living in chronic pain. Click on the ABOUT tab to see how her journey started.