Patience & Perseverance...

February 18, 2024

A few days after our last update (1/11/24) Rachel and I were sitting in the morning sun, and she communicated, “I am in not in a hurry.” I immediately asked her to clarify what she meant. 

(We are using sign language to converse, it has been our best way to talk to one another and with the kids. I will later address the speaking device that I mentioned in the last update.)

Her explanation to me was that she didn’t feel in a hurry to move on from life’s present circumstances.  Rachel is embracing the way things are and is patient. The next letters she signed formed the words, “I know you are struggling and it’s ok.”

I agreed, I was struggling. There was an underlying tension in everything I was doing…scheduling, documenting, and at home therapy exercise. Rachel’s thoughts weee a reminder to be content in all things and to abide in the Love that has always upheld us. 

“Love never gives up, never loses faith, is always hopeful and endures through every circumstance.” 1 Corinthians 13:7

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SPECIFIC UPDATE…

On Thursday February 15th, we had a virtual follow up appointment with Dr. Persaud, Rachel’s Neuro Rehab Dr. from Brooks in Jacksonville. He was very pleased with Rachel’s progress and we were encouraged by how closely he had been following Rachel’s case via the notes from the therapists at the outpatient clinic. 

We discussed medications, were able to eliminate the one that required injections 3x’s a day (so thankful for this), and discussed some natural ways to ease negative side effects from the anti-seizure medication. 

The last item we discussed with the Dr. was ordering a cranial nerve test for the nerve that is responsible for the ability to control her lips, cheeks and tongue. We decided to suspend speech therapy sessions until this test can be done. The hope is that we will discover if there is any damage to that nerve and if there is damage, have it repaired through what the Dr. called “facial reanimation surgery”.

Physical Therapy & Occupational Therapy will continue. Rachel continues to get stronger in her arms and legs. We now use resistance bands for at home exercises and have a regular routine for neck stretching and strengthening. We are hoping that she will be ready to begin trying to walk with a walker soon. She needs a bit more strength in her left arm and wrist for that next step. Rachel’s determination remains steadfast and she almost never declines when I asked if she wants to do extra work at home. 

Regarding the aforementioned speech generating device., quite simply, Rachel doesn’t like it. Navigating through the different screens and pages  requires a very big “learning curve”. Her double vision also makes it very challenging. Sign language has been our best form of communication. 

Lastly, regarding specific updates, we have nearly completed the application process for the state CARES program. One of the main benefits of this program is that I would receive compensation as Rachel’s primary caregiver. Please pray with us regarding the outcome of this application. 

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Thank you all so much for praying faithfully, sending your incredibly meaningful encouragements, and financial gifts.  Together with you & your support, we are inspired and uplifted!

With greetings of lave and gratitude from our entire family,

Jeremy