Just Run Over There and Come Right Back

On : 16 June, 2016 | Category : 2016

hkafoSeveral weeks ago on a Sunday while Daniel was still in Baltimore, I was able to go to church outside of DC where our friend preaches.  At lunch we were talking to his daughter about where she would go to college.  I told her to be careful because I never intended to be a long term Alabama resident.  UAB had the closest Master’s program in Occupational Therapy.  I was not thrilled about going there, but when talking to my parents, we decided that I would “run down there and get my degree and then come right back.”  We all laughed at lunch at how silly that sounded.  As is usually the case, life happened, I met a boy from Alabama, and it has been my home for 16 years.

 

I think I had the same silly idea when we were getting ready to come to Baltimore.  We would just “run up here,” have our surgery and hurry back home.  Right…

 

We had our follow up today, and everything is healing as expected.  I told them that I needed to wrap my mind around a time line of what to expect.  I didn’t like the answer.  She is only able to put 25% weight through her left leg for 5 more weeks. At that time, she will likely be allowed 50% weight bearing for 6 more weeks, then full weight bearing.  The muscle transfer that he did may take 6 months to a year to fully take effect.  A much slower process than I was prepared for.  This brace that she has to wear has just about been the death of both of us.  We have had to call and have it adjusted at least 3 times now.  It keeps her leg straight from her belly button to her foot.  I don’t know why, but it bothers her worse than the cast did and triggers huge amounts of anxiety for her, and for me as a result.  She is progressing very well with her range of motion in therapy and has another appointment scheduled for tomorrow.

ROM therapy

 

 

But there may be an underlying reason for this delay…I think I mentioned in a post a few weeks ago about another treatment possibility.  I was talking to another family here who is receiving therapy at Kennedy Krieger Institute.  It is an international center that provides advanced treatments in patients with various conditions including brain, spinal cord, genetic disorders and autism.  This particular person is recovering from meningitis, and has seen amazing progress in the past 3 months.  I started inquiring because polio would fall into this same category of spinal cord infections.  They spoke to some of their therapists who said that they have helped many people from other countries who have polio to regain function in their weak or paralyzed muscles.  So…I have done 3 phone interviews and gotten copies of all of Jian’s medical records and MRI again and have an appointment to see one of their neurologists next Wednesday.  We are praying like crazy that she will be accepted into one of their rehab programs and will be able to make some improvements neurologically.  This is something that was 100% off my radar, and unknown to be a possibility among the majority of medical professionals.  There are so many cases of people who were paralyzed from their neck down who are now walking after completing the rehab programs at Kennedy Krieger.  If Jian can regain some nerve innervation and strength in the muscles in her legs, that could eliminate the need for using braces on her legs, which is recommended at this point until she finishes growing.

 

For everyone asking what you can do to help, please focus on praying for our appointment with the neurologist and being accepted into their rehab program if it would be helpful to Jian’s nerves and muscles.  After hearing the same story over and over and over from so many doctors year after year, I have always chosen to focus on this verse:

 

With man this is impossible, but with God all things are possible.”

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