Wednesday, May 29, 2013

Long Time, No Talk!

The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged”
-Deuteronomy 31:8

To our friends and prayer warriors who are so kind to keep up with our story and the lessons we are learning: sorry for the brief, unscheduled blog hiatus!  April rolled into May and here we are… almost June!  I wanted to give you a few updates.

First, thank you for praying for us all throughout the spring for discernment and wisdom regarding what is next for John (and for our family) and what is the best use of his time in terms of his continued growth and development.  We had felt a God-given restlessness that, to be honest, was not very comfortable.  But we needed to sit in that mucky place for a while before the path was made known.  And thankfully, we have a new plan and feel so thankful for God’s provision! 

We had a wonderful therapy trip the last week of April, which I know many of you were praying for even though we never mentioned the exact dates on the blog.  Thank you for your prayers!  John made some significant gains and more importantly, we felt equipped with many new techniques that we can do 30 minutes to 2 hours per day with John that will enable his primitive reflexes to mature and integrate over time.  Most of our reflexes naturally express themselves, mature, and integrate before we turn 1.  However, children with developmental challenges oftentimes have reflexes that are stuck or are actually pathological (having the opposite motor response to a given stimuli rather than what is expected or a weak or lacking response). 

Because many of John’s reflexes are stuck or pathological, we feel he is no longer benefiting from the patterning and physical exercises he has been doing from the Institutes in Philadelphia on and off for so many years.  It may be that later down the road, these activities may benefit him.  We are eternally grateful for the amazing foundation the Institutes provided for John and how healthy he is due to their nutrition program (which we will continue along with a few other things… also I pray to write more later on this BIG transition after 3.5 years following one model).  But for now, it became clear that John was working very hard for minimal gain and he wasn’t enjoying these activities any more.  In addition, I know John needed more than we could provide by ourselves, but I didn’t want to put him in a school or situation that would limit him or not give him the individualized therapy and stimulation he needs.  I honestly felt full of despair, not knowing if what John needed and what our family needed even existed.

Here’s where the verse at the top of this post comes in.  I am once again blown away by how the Lord truly does go before us.  When we decided to move to Atlanta, we knew it would be good for our family and definitely good for John given all the medical, therapeutic and alternative health resources in this big city.  However, we continue to be humbled by all the things we are benefiting from that we did not know would be here.  One is the amazing holistic doctor we have.  The other and newest thing is the one of a kind neurodevelopmental center we recently found as we were praying for guidance.  This center is about 30 minutes from where we live, and each child is evaluated based on a developmental profile and given a customized therapy and academic program based on his or her specific needs.  Then they are placed with a teacher who is trained in all the therapy interventions of this center and this teacher works one on one with the student until they can “graduate” to smaller groups in which  a few children are working on the same things.  Eventually, they can enter a fully accredited classroom at the center to prepare to join a school with typically developing children or even stay through 12th grade and then potentially go to college or start a job.   Wow, we feel so blessed to have found this center and are excited to announce that John will start attending there in August!  In fact, he will attend a two week summer session as well.  He will go four hours per day (Monday-Friday).  Each person we have met at the center is such a bright light and full of hope and energy.  And I am excited that John will get to be learning and growing alongside other children (he loves the time he gets with other children; you should see how enthused he is at church after being with his Sunday School class).  I am grateful that God has yet again gone before us and is providing another great team to come alongside us in John’s journey.

We pray that you will also perceive this week how God has gone before you, making your paths smooth.  And if it doesn’t appear this way yet, pray you will trust His faithfulness and that He will reveal His provision to you.  Despite the trials, I do believe He desires to show us the way to walk in… and He wants to walk forward on this path with us.

John's amazing horseback riding instructor and volunteers! And of course the fearless steed, Pinky!

Other praises to report:
-John had a great appointment Tuesday morning with Dr. Sladky, Dr. Shoffner’s new partner (the mitochondrial guru here).  He was very pleased with John and also gave us some encouraging test results back.  John had a normal EKG last Friday and also a much-improved Resting Metabolic Rate test.  This basically measures how efficiently John’s body and his mitochondria use oxygen.  3 years ago, John only tested at 43%.  On Friday, he tested at 82% which they basically consider to be in the low end of the normal range!  It’s always nice to see on paper what you know to be true… continued progress!
-Last week, John received his new therapy equipment: a stander for weight bearing that also convert into a chair for other activities.  He also has a new gait trainer.
-We also had another follow up appointment with the assistive technology/communication folks at the children’s hospital.  The first appointment was very discouraging but the second appointment went much better!  And we ordered a communication device for John… now we just have to wait the 2-6 months to get it!
-Last but not least, Daniel turns 2 on June 6th!  Can't believe our precious boy is growing up so fast!  What a blessing and joy he is to our family!

Additional prayer requests:
-ENT follow up appointment on June 7thto re-check John’s ears.  Last time, one ear had negative pressure and the other had fluid in it (so that ear failed the test completely).  He may need to get tubes put in, and we pray we will know what is best through this next appointment.  I think tubes could be a huge help, but I am concerned about the anesthesia needed to perform the procedure due to John’s mitochondrial disorder.
-For continued enjoyment for John and development in physical, speech, and occupational therapy.