Sunday, September 6, 2015

Nesting Part Two

Thank you for all your prayers as two of my boys have been up north!   John’s procedure was thankfully uneventful, the doctor accomplished his goals, and recovery is going well so far.  Praise God!  Not surprisingly, most of the tightness was in John’s hamstrings, so a good bit of muscle lengthening was done there.  John has open-toed casts that go up his legs stopping right above the calf muscles.  Meade said he is getting used to them, and they won’t prevent him from participating in any of his usual activities (except we are obviously modifying bathing techniques).   

On Friday morning, Meade and John headed into New York City for follow-up therapy with a wonderful lady another family in Atlanta had highly recommended.  She is an Anat Baniel practitioner and is the one who originally recommended the orthopedic surgeon in New Jersey.  It is refreshing to see people in both the medical field and the more “complimentary” mindset working together and believing in the necessity of each field’s work in the development of a kid like John. It certainly takes a village! The therapist was encouraged by how long and straight his legs are after the procedure.

In the last post, I mentioned two other big endeavors we have undertaken in this nesting season.  One was a trip to NYC in late June/early July.  Two weeks.  ALL FIVE of us.  We had no idea what to expect, but it actually turned out to be a wonderful family vacation full of adventures in addition to being a great time of therapy for John.  He saw the same practitioner he is seeing this weekend twice daily for ten of the days we were there.  After an initial snafu with our housing arrangements, God provided the perfect place for our family that even was attached to a grocery store down below.   Between getting our essentials there and ordering a lot of pizza, we were set!  And we had a lot of time to be tacky tourists (you can imagine the looks we received pushing two strollers with three kids down the street with this next baby clearly making his presence known as well).  Walks through Central Park, Museum of Natural History, Children’s Museum, boat ride to see the Statue of Liberty, a few fun meals out, catching up with some old friends, etc.  We really had a nice time, and it had been awhile since we have taken one of our combined vacation/medical trips.  Brought back a lot of memories from the many trips we took to Boston and Philadelphia in the early years.

We learned a lot from each therapy session, especially in involving John more in his daily routine than simply “doing” things to him, like mechanically plowing through feeding, bathing, or dressing him.  This is a significant change in approach to seemingly simple things like how we help him sit up or how we pick him up and transport him... things can become perfunctory.  We also worked on combining eye contact, verbalization (like asking him to say “ahhh” to indicated “yes”), and reaching out/touching to communicate what he wants. 

The other major undertaking was a trip to Plano, Texas for one night in late May.  We saw a brilliant and kind neurologist who specializes in cerebral palsy and actually has cerebral palsy herself!  Not only is she world-renown in this field (hence the trip), but it was also so refreshing to be with someone who gets it from the patient perspective as well… which leads to one of the main points of this trip: to gain a proper diagnosis one way or another for John as he had not had a comprehensive evaluation in over three years, is now in a very stable place medically at age 6.5, and most of his doctors were no longer believing John had primary mitochondrial disease.  Diagnoses aren’t always helpful, especially if therapies and interventions are going to be the same regardless, but they certainly can be beneficial when it comes to insurance, Medicaid, and qualifying for certain clinical trials.  So that was the goal… to see if John has pure CP due to his genetic mutation rather than a primary mitochondrial disease also being a factor.  Pure CP was found to be the case. 

This is significant in that we are hoping to enroll John in a trial next year (whether or not he is in the actual trial or in the “compassionate use” category) through Duke in which sibling stem cells from banked umbilical cord blood are given to the patient.  We have been hoping something like this might become available for over four years, as we banked both Daniel and Andrew’s cord blood at Duke’s blood bank with this end in mind.  We will also bank our next son’s.  (Side note: for those of you expecting a baby, if you decide not to save their cord blood for your own potential use, PLEASE consider donating it.  It is free and is a great source for research and treatment and does not involve embryonic stem cells.) Dr. Kurtzberg is at the very top of this field, and she has already completed many successful trials treating children with cancer.  This trial would not be a possibility for John if he still carried the primary mitochondrial diagnosis.  Of course, he has secondary issues as the mitochondria are certainly affected when movement and development are not typical. 

Additionally, “Dr. Jan” in Texas patiently talked to us about every detail of John’s care, from medications and supplements, to adaptive equipment, to feeding and drinking in more age appropriate ways, to communication devices, to wanting to check certain labs and do a bone age study, to needing a new baseline EEG, to bodily functions, to bracing and orthopedics, to his vision and hearing, to participating at school and in the community, etc.  She truly looked at the whole person and all of John’s needs.  This was a real gift as parents who typically have to piece together information running from one specialist to the next, without one overarching comprehensive assessment driving the plan of care.  We felt extremely blessed and came home with many good ideas we have been implementing since. 

So that is our nesting update in a nutshell.  The road can be long and certainly draining at times, but there are many gifts along the way as we see how God provides and orchestrates every detail.  Thank you for reading and for continuing to pray!  Meade and John return tomorrow, and we can’t wait to see them!  We can hardly believe we will be welcoming another son into our home in October!

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