Happy Birthday GeorgePaul!   5 comments

New meaning in the word “Happy” for us this year!  GeorgePaul is 11 years old today and is pain free.  I catch myself during the day, just watching GP doing an ordinary thing, and I am cognizant of his enjoyment and ability to do whatever it is.  David and Jillian have both mentioned this same type of  ‘in-the-moment’ observation.  I am grateful for the chance to know this on a deep level; that being pain free is a gift.

We will be leaving for Mt. Hermon soon.  This statement, in itself, is not one I thought I would be writing a month ago.  GP is especially excited to go to our annual family camp.  He has held his correction for a long enough time now that we can miss a week in between appointments.  Jillian will have her first correction when we return.

I have been studying (I know, big surprise there) about the history of NUCCA and upper cervical care.  It is fascinating – and makes so much sense!  The body was created to work as a whole – the skeleton supporting the muscles and nerves.  When the structure itself gets ‘out of line’, there is an effect on the muscles and nerves.  Correcting the very complicated malalignment in GeorgePaul has clearly affected his nerves and muscles.

We are so blessed – beyond any measure – to celebrate the life of our son today.

Posted July 19, 2011 by broshaker in The Story Overview

San Diego Neurosurgeon Visit   3 comments

We are back home from visiting beautiful San Diego.  We met with two Kaiser neurosurgeons that we originally requested to be referred to by our neurologist.  At the time of GP’s diagnosis, we were just starting to research this whole condition, and their names came up in a forum.  We had not come across any other names yet, and so asked for the referral to these doctors, and the appointment was made for July 12 (rescheduled from June 21.)

These doctors were professional and very nice.   We spent quite a bit of time with them, going over his whole story: they reviewed all 3 MRI’s, and asked many questions.  The most recent MRI (July 5),  did not show them anything new.  This is good news/bad news.  We don’t want to find anything wrong that could signify a bigger problem for GP, but our human nature desires to find relief in a specific, clear, smaller thing to fix and eliminate the problem!  In the end, they said they did not know to how to help  because they had not seen this in anyone so young and would be hesitant to perform surgery.

David and I came away feeling discouraged.  I think we had held this appointment in our minds as one that would provide even deeper insight into what has caused such intense pain for GP.  This was not the case and we really struggled emotionally yesterday with the end result of the discussion.

This neurosurgeon visit did another thing for us, however.  It confirmed and solidified our commitment to Upper Cervical Chiropractic care even further.  This is what has made the most difference for GeorgePaul.  He has not had any TN/GPN pain since June 20, and he has not had any ear pain since June 1.

The main thing is that GeorgePaul is not in the nightmare of pain that he lived through!  We keep learning that His ways are not our ways, and His thoughts are not ours.  This is what faith is for us in this situation:  being given a direction to follow that came about when we asked for it, and following through on it even when both David and I were skeptical (referring to UCC.)  We continue to listen to God – and are beyond thankful that He cares for all of us.

We will be seeing Dr. Flory today for both GeorgePaul’s weekly visit, and for Jillian’s first correction.

Posted July 13, 2011 by broshaker in The Story Overview

Wonderful Weekend – Upcoming Neurosurgeon Appt.   1 comment

It has been 22 days since GeorgePaul last had eye pain on June 20.  He last had ear pain on May 31.   Wow!  I love writing those words – and we are thankful, consciously, many times a day for this!

We drove to Crestline as a family on Saturday and met friends in order to watch the hangglider ‘fly-in.’  There is a launching point on the rim above San Bernardino.  The freedom the hanggliders must experience up there while they are soaring must be similar to the freedom we felt at having GP with us; outside, in a lot of wind, and up on a mountain.  It was one of those perfect afternoons and we were paying attention!

The day before our Rim of the World adventure, David and I had our first date since  February. It has been just shy of 21 weeks since we have been away from the house together, without our children.  This was a milestone for us; to be able to leave GP in the loving and capable charge of his sister and have a great time together away from our home.

We have an appointment in San Diego tomorrow with two neurosurgeons.  This trip will include a visit with my aunt which makes the focus much more enjoyable!

 

Posted July 11, 2011 by broshaker in The Story Overview

MRI at Kaiser Sunset   1 comment

It went well.  The technician was compassionate and helpful.  The ear plugs were placed properly in GP’s ears, there were pads between his head and the halo cage, and he gave GP a short break between two of the three tests. Remaining absolutely still for 14 minutes at a time is not the normal condition for a 10 year old boy! GeorgePaul started hiccuping about 10 seconds after he got up from the table.  He has very strong bouts of hiccups, so we were glad that he didn’t have them during the tests.  He would not have been still!

We are traveling back down the hill to Atlas Spinal Care today.

Posted July 6, 2011 by broshaker in The Story Overview

GP’s Pain – Recap, and MRI today   Leave a comment

Recap:
51 days – ear pain                            Jan. 31 – Mar. 20
19 days – no ear pain                      diagnosed with Trigeminal Neuralgia (TN) on Mar.29
51 days – ear pain                            Apr. 10 – May 31
19 days – no TN/GPN pain              diagnosed with Glossopharyngeal Neuralgia (GPN) on June 9

(June 9th – Sharp, intense stabbing pain in Right Eye for one minute. Level 10.

1 day – eye pain                                June 18th – Full day of Eye Pain; R and L eyes. Intense Stabbing every 5 – 10                                                                                             minutes all day. Level 6 pain.  6 Eye pains the next day, June 19th.
16 days – no TN/GPN pain

Today, we will have the MRI at Kaiser Sunset on the border of Los Angeles and Hollywood. GeorgePaul is not looking forward to this. He has never liked loud noise, running from the vacuum cleaner even as a toddler. The MRI is loud, and he can’t move for 45 minutes to an hour. The test is at 3:15 p.m. Thank you in advance for praying for him! We know, beyond any doubt, that God is present, and cares about the smallest things; so we know that He goes before us and sees the fears of a 10 year old boy!

I forgot to mention yesterday that GP was able to go to church for the first time since the middle of January this year. He loved it. We loved it. The topic of the sermon was Job and Pain. Coincidence? I think not. 🙂 Celebrating at HDC was really cool. 🙂

Posted July 5, 2011 by broshaker in The Story Overview

Pain Free Ear and Eyes – 32 days (19 days, then 13 more)!   1 comment

“Time passes when you’re having fun.” How true this is! I didn’t realize that it has been 10 days since the last post! GeorgePaul has continued to build up strength and enjoy every day and every activity. Since the last post, GP and his dad had another male bonding weekend. I went up north to pick Jillian up from camp, and to visit with my parents, brothers, and their families. GeorgePaul went to a BBQ, went swimming, watched “boy” movies (is there a term for the opposite of “chick flick?”), and just enjoyed each other.

We have been to a couple of dollar movies, and done some grocery shopping, and a lot more swimming. These activities have tired him out, but have not caused any pain. He has reveled in our day-to-day life.

GP had some major stomach pain over those two or three days, which has since subsided. We believe that the Tegretol (anti-seizure medicine) is causing the problem. It is not ongoing pain, but causes a lot of distress when it is happening.

We have stopped the Indomethacin (super strong anti-inflamatory), but are continuing the supplements and the Tegretol. If GP’s pain were to reoccur, the medicine would already be in place for relief. If we were to stop Tegretol, and the pain began again, it would be an agonizing two weeks of no relief for him, and it takes months to wean the body from this type of medicine. We will meet with the neurologist, (the one who is in charge of prescribing/dosing the Tegretol), on the 16th of August. We do email this doctor periodically, and he is always prompt with a response for us.

GeorgePaul continues to hold his atlas correction. He will be visiting Dr. Flory only once a week now, a month earlier than the initial plan! We have also started our daughter, Jillian, with Dr. Flory as she has had a lifelong, extreme motion sickness problem, joint pain, and uneven hips.

I was researching the other day (some things have NOT changed!) and came across an article in the UC Health magazine. (Upper Cervical Health). It is titled “What your Healthcare Provider Needs to Know…” The point that grabbed me was in the last two paragraphs. It references Dr. Peter Janetta as he talks about some diseases as brainstem problems. Two important points about this reference: 1) The brainstem is where most cranial nerves originate, and what the atlas and the axis, C1 and C2, protect. This is why we are seeking help from Dr. Flory as this is his area of expertise as a NUCCA doctor. 2) Dr. Janetta is the neurosurgeon who pioneered the Microvascular Decompression (MVD) surgery, that is the best surgical fix for trigeminal neuralgia, or other neuralgias. This is the surgery that we are also continuing to seek input on, in order to be proactive for GeorgePaul. The fact that a neurosurgeon sees the connection between his surgical knowledge and what Dr. Flory does is confirmation for our choices. We pray that we don’t have to go the surgical route.

Upcoming Plans: GeorgePaul has the 3D FIESTA MRI on Tuesday, July 5, at Kaiser Sunset in Los Angeles. We will also meet with two neurosurgeons in San Diego on Tuesday, July 12. We are now actually planning to go to Mt. Hermon! This is an annual vacation that we thought we would need to forego this year. GeorgePaul is VERY excited about this trip!

We have talked with many of you in the last month, and we are so very thankful for your prayers, words of encouragement and your love.

Posted July 3, 2011 by broshaker in The Story Overview

“Delightfulness”   7 comments

This is GeorgePaul’s word for the day to describe getting to hang out with his cousin Brennan! Crises refocus our priorities; this is not unique to us, but we are truly glad for the chance to refocus on what really matters. GeorgePaul has a keener appreciation for the world around him – “the things God made for us” and the One who made them. We have been allowed the privilege of walking more closely with God, who knows the smallest details of our thoughts and emotions, and the sure knowledge that He never leaves us. Incredible Grace.

Being an early riser, I am always sitting at the computer, drinking the best coffee in the world (big smile), when GP wakes up and opens his door. This has been the crucial moment of each day; waiting to see if he wakes up in gasping pain, or with a smile and a ‘good morning.’ This small moment lays out the entire day. What a JOYFUL moment this time has been each morning in the last three weeks! We don’t take that smile, hug, and good morning for granted!

We visited Dr. Flory at Atlas Spinal Care yesterday, and GP has continued to hold his correction. This means that his body is doing the work of pulling his muscles back from the wrong place that his atlas had been in. This is great news! He has a long way to go as the atlas is only corrected slowly and the muscles readjust to the new position. The brain stem, where most of the cranial nerves originate, has more room to ‘breathe.’ We are so thankful that He directed our path to Dr. Flory and for upper cervical care!

Posted June 23, 2011 by broshaker in The Story Overview