I am SO tired, but I am forcing myself to write this blog b/c I have to share the good that we experience.
Today our family unit went to Nemours to see Dr. Ried. She is the Division Chief of Physical Medicine and Rehabilitation at the Nemours hospital, and our genetics Dr. had her squeeze us in ASAP since she’s scheduling out as far as August for new patients. When Dr. Ried walked in, her eyes lit up…”Look at you! Look at you!!” she gasped at Reagan. She told us she was not expecting what she saw. Based on what our genetics Dr. had told her from us being in the hospital for two weeks, and based on what she knew of the MRI, she was not expecting eye contact, or purposeful movements, or sitting by holding her head up on my lap. She was expecting dismal. She was expecting to “have a headache” after our visit.
“The quicker kids bounce back after a traumatic event dictates how well the overall outcome will be.”
– Dr. Ried
Dr. Ried said Reagan was doing remarkably well. She said Reagan was doing 100% better than what she expected to see when she walked in.
Dr. Ried is one of the very few physicians in America to be board certified in both pediatric rehabilitation and spinal cord injury medicine. Before completing her medical training, she was a speech pathologist working in the field of brain injury for 10 years. She joined Nemours in 2012 from Shriners Hospital for Children in Philadelphia, where she was medical director for rehabilitation and taught on the faculties at both the University of Pennsylvania and the Temple University School of Medicine in Philadelphia. – Nemours.org
I read that to Rob this evening and he perked up. “She is literally THE BEST person Reagan could see!” When I asked her, “have you seen kids like Reagan re-learn how to walk, talk and do things.” “Oh YEAH!” she said, without batting an eye.
Holy cow…we were just given a little more hope. We will hold on to that. Rob said b/c of her experience and her evaluating Reagan today…she probably knows the outcome is more positive than not. She wanted to take a video of Reagan to put in her chart…maybe b/c she knows the progress through therapy will tell an amazing story. That is our hope, anyway.
We now have three evaluation appts. set for this coming week. Reagan will be seeing a physical, speech and occupational therapist for evaluations…they will all provide reports to Dr. Ried, and she will direct the therapies and treatment focus for Reagan at each of her appts. In addition to those appts, we will see a Neurologist this coming week. We’ve got a busy week planned with four Dr. appts., and we are hoping for more positive news and a plan that continues a positive course of action for the future.
While it’s great that I have something positive to report…we are still exhausted. I’m also having a hard time watching my friends continue to have fun with their kids around Reagan’s age, their kids continue to grow and thrive, while we work on tummy time round two and go to constant Dr. appts.
Tummy time round two
I have to remember that our path is not the same as everyone else’s. God has chosen to refine our faith through the fire during this circumstance.
In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.
I Peter 1:6-7
Our goal, is to get back to this, which was a week before Reagan was admitted to the hospital for RSV.