Just a quick hello from the Kanoy tribe. There is really nothing new to report, Nicole has spoken with a couple of people but nothing earth shattering has manifested itself from those conversations.

The views and responses to the site continue to be very encouraging and uplifting to Nicole and myself and we want all of you to know how much we appreciate you.

As more develops, be assured that I will post it here as soon as possible. Until then, we wait.

In Christ,
A.

How is everyone tonight? The support that has been expressed in the last 18-20 hours is quite humbling and overwhelming. As the administrator of this page, I can view how many times in a day the site has been visited. Today alone, Kelsey has had more than 150 people view this page and/or make an uplifting comment. On her behalf, thank you all for the kind words and the continued prayers.

Nicole and Kelsey were not able to get into Johns Hopkins today. While disappointing, this is was not a total surprise. They are scheduled to leave out tomorrow, Friday, at 8:30 am, and Nicole is prepared to reschedule her flight at the last minute if necessary. That leaves us still wondering, “Now what”? Once Nicole is back here and we have a chance to talk in more detail, that will become more clear. We have ultimate faith, just as many of you have expressed, that His will IS going to be done.

Over the last few days a song that we play in the praise band keeps running through my mind. I wake up singing it and go to sleep singing it (to myself of course…don’t Grace family, Scott will not put a mic in front of me.) “Strength will rise as we wait upon the Lord, we will wait upon the Lord…….Our God, You reign forever, Our hope, our Strong Deliverer……….You do not faint, you won’t grow weary, You’re the defender of the weak, You comfort those in need, You lift us up on wings like eagles” I paraphrased of course, but how can you let the things of this world control you when the truth lies in those few stanzas? So, now what? We wait.

As for the trip it self. Wesley and Pam Corbitt have some dear friends in Baltimore that treated the girls like family. Kelsey called me last night to tell me that she made new friends and they were really nice, she was so excited. I am not sure of their names, but Nicole will tell me later. Don and Melody Jones also have family there who were very hospitable and helped Nicole take her mind of off things for a while. Kelsey called me early this morning to tell me she was headed to the hot tub, she’s on vacation, totally oblivious to all that is going on. If you stop and take a 10,000 ft view of things, she is the one most greatly affected by this and is the one who is remaining the strongest (..”You comfort those in need”, remember). Nicole and I get so engrossed in the symptoms, the doctors, the bills and everything such as that, and then look at her with that big smile and big heart…..it’s almost the true definition of surreal. I find myself occasionally wondering if this is all real when I see Kelsey acting as though nothing is wrong. Then reality snaps me back. Anyway, I just rambling now.

Thank you all again for the kinds words and prayers. As more develops I will be sure to post here to keep you all informed.

In Christ,
A.

Good evening all,

I’ll start out by referencing a video that stars Kelsey, produced by a very sweet person……”It’s the Climb”.

Today Nicole and Kelsey met with Dr. Franomano in Baltimore, MD.  She is an expert in genetics and is very versed in Ehlers Danlos Syndrome.  She has worked with many, several, cases of Chiari children and adults who suffer from the same type of symptoms as Kelsey.  The appointment began around 9 am and wrapped up shortly after 1:30 pm, just a quick check up, right?

She confirmed that Kelsey does have Ehlers Danlos and we need to prepare ourselves and Kelsey for a life of, well, climbs.  The pain and discomfort that she is feeling now will, by all accounts, continue and gradually worsen with time, or at least that is the normal course with EDS.  The condition is genetic and is something that appears to have been passed down from Nicole.  I’ll talk more about that in a moment.  With EDS, people can experience a variety of issues, problems or complications, and some may never really know they have it.  If you have a double jointed elbow for example, chances are you could fall into the group that has it but never has an issue.  For Kels, its a little more complicated.  After her surgeries, the scar tissue that grew was thicker than normal and larger in mass.  This is where some of the pressure is coming from.  Scar tissue is extremely hard to see from an MRI, according to our neurologist, which is why her recent scan appeared to be relatively normal.  I say relatively and I’ll address that in a moment also.  The second affect of EDS on Kelsey is that she is showing signs of cranial instability.  Basically her head (cranium) is not as rigidly attached to her neck as it should be.  She doesn’t look like a bobble head doll, its just not as solid yours and mine.  This is also a contributing factor to the excess pressure on her cerebellum.  Dr. Francomano suggested a collar to be worn for undisclosed period of time.  How well that will go over with Kels, you know as well as I do. The confirmation of EDS, while expected, was not what we wanted.  As she ages, the connective tissue between her bones and vertebrae will deteriorate at more rapid pace.

The second piece of information we were given is that while Dr. Francomano was not completely able to diagnose Tethered Cord, as we thought she could, the signs are definitely very evident that she has it.  The biggest indicators lie in her spine and the shape of her brain.  The spine is curved in three places, normally.  For Kelsey, two of the three curves are actually straight, indicating something is pulling it.  The brain also has two curvatures, but for Kelsey, one of these curves is straight, again, indicating something is pulling on it.  While Dr. Francomano has seen numerous cases similar to Kelsey,  she was not able to make the final call on the tethered cord.  However, her years of experience and research give the ability to spot complications and she was able to point out exactly where the problems are.  She has contacted two people at Johns Hopkins and one in New York to seek their opinions and hopefully Nicole can meet with someone from Johns Hopkins while she is there.  Our neurologist here in Savannah did his residency there and is reaching out to his contacts there for us as well.

The last thing that we learned today goes back to my early comment about Kelsey recent scan being relatively normal.  Dr. Feldstein, our neurosurgeon, told us after reading her scan shortly after the second surgery that he saw something in the skull that did not look normal but he wasn’t sure what it was and that we would continue to watch it to see what materialized.  The MRI from a few months ago show this “thing” has become more prominent and Dr. Francomano is saying that it appears as though the skull is misshaped and is protruding into the brain.  This is the third piece of the puzzle that is causing the pressure on her brain and cerebellum.

I mentioned something earlier about the EDS being passed down from Nicole.  While Dr. Francomano was performing a series of test on Kels, Nicole demonstrated to Kelsey what she needed to do and the Dr. immediately said that she sees where Kelsey’s EDS originated.  A few weeks ago we sent a copy of Nicole’s MRI to her as a precursor to the visit and she was able to draw a few things from that.  She wanted to see Nicole today, but that would have taken an additional two hours and Nicole was more focused on Kelsey than herself and elected to postpone that.  This does explain the back and knee problems that Nicole has had, which has been going on since before we ever met.  We really did not spend a lot of time talking about her, so that is all I know about what is going on with Nicole.

I had planned on putting a lot more detail in this post, but it is 12:30 and I have to be in the office at 7 am, our computer is completely infected with malware and I’m having a very difficult time typing.  I backspace  three times for every letter I type and this thing is moving so slow I’m ready to throw it off the desk!  I will be back tomorrow with more details and talk about the special people God put in the girls life while in MD.

In closing, please be, actually remain, in prayer for Kelsey and Nicole.

In Christ,

A.

PS.  If you have not seen the video of Kelsey dancing to the Mylie Cyrus tune Climb, I will try to get it from Christy and post it here.  I watch that video almost everyday and it brings a tear to my eye every time.

Good morning,

Today Nicole and Kelsey leave for Maryland and what could be a turning point for us. They are meeting with a specialist in Baltimore that works primarily with Tethered Cord and Ehlers Danlos. After months of researching the internet and speaking with several parents of children with similar backgrounds as Kelsey’s, Nicole located the doctor, Dr. Francamano, who comes highly recommended.

The appointment is Wednesday, the 11th and I will be back here to post whatever we find, or don’t find. Thanks to Ms. Pam Corbitt, the girls will not be in a new city all alone. Pam has a very good friend in Baltimore who will pick them up from airport and insure they arrive safely to the hotel. Additionally, Melody Jones volunteered to ride shotgun, so Nicole will have her as a traveling mate, since they are going sans Daddy. Please be in prayer for safe travel and for clarity as we are still attempting to discern His will in all of this.

In Christ,
A.

Good Evening Everyone,

I’m not sure how many people are still following this site, but now is a good time to update it. Its been a while since I written anything down about Kelsey and all she has been going through lately, so this may be a little rough.

Most of you know that we have had a rather mild, at least by Kelsey’s standards, summer. The monitor she has been on has continues to serve as a reminder that we are no where near finished with this. We are alarmed anywhere from 10 to 50 times a night that her oxygen and/or heart rate is still dropping. We started a test program with LifeWatch about 3 months ago with a monitor they think will help. It tracks her heart rate and if there is a significant drop that last for a prolonged period, it will alarm at the monitoring company and they will dispatch an ambulance. So far, we have not had an ambulance show up unexpectedly.

There have been instances over the summer that caused concern, but it seems so long ago that I honestly can’t remember all of the details. But over the last 6 weeks we have seen notable changes in Kelsey’s condition. Her rates have been getting dangerously low, 50’s for the heart and a few times I’ve seen her oxygen in the low 80’s even high 70’s. The specialist we have been seeing really do not know what to do at this point. They all say, “Well, if her rates drop to ‘XX’ then we’ll do something.” What, what exactly will we do? That seems to be the million dollar question. She had an MRI two weeks ago that showed no signs of bone regrowth or any other forms of compression, but by the symptoms, something is going on. We are scheduled to meet with a specialist in Maryland on November 12th that will tell us if she has Ehlers Danlos syndrome and tethered cord. If she tests positive for one or both of these, then we will have a new direction. Until then, we are at a stand still.

Last Wednesday, the 15th, Kelsey and I were sitting on the couch downloading her monitor, well, I was downloading it, she was supervising. All of sudden, she sat up and said, “Dad, feel my heart, its doing it again.” I put my hand over her heart and it felt like she had butterflies in her breast pocket. Her heart was beating very erratically. Then she grabbed her throat, started crying and fell on the floor, trying desperately to take a breath. I was able to calm her, and Nicole, long enough to move her to our bed and lay her down comfortably. Her pupils were rapidly changing sizes, from needle size to marble size, very erratically. She badly wanted to go to sleep, and as I was trying to keep her awake, her eyes began to roll back in her head. I told Nicole to call 911 and by the time police and First Responder showed up, she was coming back to normal. As the ambulance showed up, she had pretty much gotten back to normal Kelsey status, like nothing had ever happened.

Nicole and I decided that we would draft a letter to all the pulmanologist in the South East and shotgun them out, hoping someone has seen this before and could offer a fresh perspective. So far we have had two responses, one from Orlando and one from Augusta. Nicole left tonight for Orlando to meet with that specialist on Wednesday the 21st. Hopefully they will be able to treat her secondary problems while we figure out what is causing the primary problem.

That is a very condensed version of what Kelsey has been experiencing lately and I plan to start up documenting her journey once again. Please continue to keep Kelsey and Nicole in your prayers.

In Christ,
A

Good evening everyone,

It has been quite some time since I have updated, so this one has the potential to be rather lengthy.  I have actually been embarrassed about my lack of attention to this site and that has led to my delayed postings.

While there is plenty of information for me to write about, tonights postings is of a urgent nature.  Nicole and the girls went to New York last Tuesday, the 23rd, for a routine check up with Dr. Feldstein.  That visit went well, or at least as well as could have gone, but I will talk more about that later.  They were scheduled to fly back home to Savannah today, but that was postponed.

While they were in the terminal, at the gate, Kelsey had some type of abdominal attack.  I had just spoken to her on the phone and explained I was out of town on business and would not see her until Saturday.  She was pretty upset as she gave the phone back to Nicole.  About 15 minutes later, Nicole called to say Kelsey was doubled over in pain and that an airport EMT had called an ambulance.  They took Kelsey to the emergency room at Beth Israel Medical Center in Newark.  Nicole is there by herself, I am in St. Louis on a business trip.  Our cousin,  Shannon, contacted her church and two members gladly volunteered to go the hospital to help Nicole with the girls.  Thanks Jorge and Anna!

They have done an ultra sound, a CT scan and an X-ray of her abdominal area, but as of 9:00 pm I have not heard any news as to the results.  At around 4:00 pm the doctor told Nicole he had ruled any type of viral infection and that it was either apendecisitis (sp), some type of issue causing her intestines to knot her an anuerisum (sp).  Kelsey is going through periods of extreme pain then periods of no pain at all.  We do not know what is going on with her and are asking that we all pray that God continues to show Kelsey favor and mercy.

Now for the Chiari related update:

Since her last surgery, we have seen times of great pleasure and great turmoil.  Kelsey has had week long periods of extreme headaches, not being able to sit, stand or lay down due to the pain.  Then there have been week long periods when we barley see any type of symptoms at all.  Through continued visits with the cardiologist, we found that there is still no type of monitor made that will give us (and the doctor) the readings we need.  Nicole contacted a research team in PA that specializes in building specialty medical devices in hopes they would be able to build something that help us.  While they are familiar with Chiari, they were unable to build the monitor we need.  Therefore, we are back to square one on the monitoring.

Through all of Nicole’s research, she has more and more links between Ehlers Danlos syndrome and Chiari Malformation.  All this information was given to the cardiologist and nuerologist, both of which suggested we meet with a geneticists.  Nicole and Kelsey met with a specialist in Jacksonville, who was very eager to help but had not seen this type of case before and told us she needs more time to research on her own and would follow up with us later.  There are two genetic specialist in the Northeast that we are trying to get appointments with that have more experience with the Ehlers-Chiari link.  We are hoping to see them soon.

Kelsey had her 6 month MRI scheduled for September 8th, but that was very unsuccesful.  Kelsey was stuck 6 times in an attempt to start an IV.  But with her fear of hospitals and the lack of a oral sedative, the nursing staff was unable to get the IV to work.  We rescheduled for the 17th and were able to finally have the test done.  This brings us to this latest trip to NY.

They met with Dr. Feldstein on Wednesday the 24th and he gave her a relatively decent report.  He said that the Chiari looks to be under control and he does not feel like she should have any complications related to the malformation.  While that is very promising news, it did not explain why she is still experiencing the heart pauses and the other symptoms we have seen.  If you remember a few days after the March surgery, I mentioned the possibility of a complication with her spinal cord.  Dr. Feldstein said that the scan should what appeared to be some type of abnormal formation the cord, he would not know if it was significant until after the surgery.  That time is now.  The MRI scans from this month showed him that there is some type of issue with the spinal cord, but he does not feel it requires surgery at this time.  He recommended we continue on the same path we are on, and continue to monitor her as closely as possible.

I appreciate all of you that have continued to check this site, and please accept my apology for not doing a better job at updating.  We are still praying that God will completely heal Kelsey and she will lead a normal life.  With all of the loving comments and compassionate gestures from our friends, family and church, I know that you all are praying for the same thing.  I had a lot more to say, but given the events of today, I’m just not in a real talkative mood.  I had forgotten how good this feels to write out our journey, so over the next few days, I will add more as it come to mind.

In Christ,

A.

Good Evening to all of you faithful ones that are still checking this blog, although I haven’t posted in a little while.  Even though I have not updated, this does not mean that we have not had developments and I truly apologize for not writing in a while.

Kelsey is doing okay, but she has had quite a continuation to her journey since we got home and tried to carry on with normal life.  Since there have been so many things happen that I want to talk about, please allow me to return home, check my notes against Nicole’s and I will post Sunday night.

Thank you all for the continued prayers,

A.

Good Evening All,

It has been quite a while since my last post and I admit that I am very embarrassed for not putting anything up here sooner.  With that, where do I begin?  First of all, I would like to say that Kelsey is doing very well.  There are still issues that we deal with, headaches, balance, the invisible but ever present heart pause, but all things considered she is doing very well.  Secondly, since my last post, our adorable little Kelsey had a birthday and is now 3!!  I truly understand what the more mature community means when they say, “Before you know it, she’ll be grown and moving out.”  I can believe that, where has 3 years gone.  I digress.

Anyway, since the last post we have met with the heart specialist twice and the neurologist once.  Dr. Long, the cardiologist, first told us that he needed to do whatever he could to monitor her situation and that he was very concerned.  I told you that.  He is still very concerned, but there is nothing we can do to monitor her the way we need to.  We are still using the puls-ox at night, but now down to only maybe 3-4 times per week.   Each of our specialist have agreed that her heart is pausing, there is no denying that.  What they are saying is that the duration of the pause is not long enough to cause any problems, at least not at this point, and trying to constrain her by a monitor 24-7 would only add more problems.  Those of you who know Nicole well and/or have spoken to her for more than 3 minutes about Kelsey know that she spends an enourmous amount of time researching Chiari and trying to find answers.  What she has found at this point, that seems the most relevant to Kelsey is an condition known as Ehlers-Dannloss, (please forgive the spelling, I spelled it like it sounds).  This is primarily a connective tissue disorder, but is linked very closely to Chiari patients.  I’ll be honest and say that I understand the link, but not well enough to verbalize to you guys.  Just know that the neurologist is looking into and we hope to have an answer in the next few weeks.  Nicole and Kelsey are traveling to Jacksonville for an appointment with a geneictsist (again forgive the spelling) to set up a test for Ehler’s-Danlosds,  I think towards the end of June.  Until then, we were life should proceed as normal, and to watch for any abnormal behavior and document it.  If she passes out, faints or vomits, then we know we have a problem and are to go straight the emergency room.  Aside from that, let her be 3!    And we try, but at the same time it is hard not to be overly protective, we are just working on finding the right balance.

As for the family, we have had changes all around.  Kelsey’s grandfather, the famous “Icky” she is so proud of, recently graduated from John Marshall law school in Atlanta.  What a testament to dedication and perseverance.  He worked a full time job during the day and almost carried a full class load at night.  Congratulations Eric!   Callie has moved up to level 3 on her gymnastics team, and she is so very proud of herself, as she should be.  She remains the solid rock of this family.  Not trying to be all poetic  and “deep”, but she is like the tides. You can bet the tide will come in and go out again, without fail.  Well, with Callie, you can bet she will be lovable and angelic, no matter the circumstances.

Nicole and Cambrie are still in a power struggle, trying to determine who is in charge.  Cambrie is waking up at least 2-3 times per night, screaming like she is in severe pain.  We have done this twice before, so we have an idea when they are spoiled and when something is wrong, and at this point, something is wrong we just can’t figure out what.  But, this too shall pass.  As for me, I have left Yancey Bros. and the Caterpillar organization and moved on to AG Edwards/Wachovia Securities as a financial advisor.

To keep with my theme of (or least attempt at a theme), I will end with a praise.  You hear a lot of times people say, “I’ll be sure to add your daughter to our prayer list”?  Well you know it happens, but if you are not part of the church or list, or if you are out of state, you may never meet the “list”.  The Friday after I started my new job, one of the ladies walked into my office and said, “I apologize, but I had  no idea who you were.”  Of course, my reputation precedes  me, so at this point I was wondering if this was good or bad (thats a joke).   She said, “We have been praying for your daughter since March, and never realized you were her father.”  That proves the true  nature of God’s people, period.

A.

Good Morning All,

It has been quite some time since the last update, there has been little to write about.  Until today.  We are meeting with our cardiologist this morning to discuss some things that Nicole has found while some additional research.  She has been reading about a condition called dysatonium, excuse the spelling.  At this point, I cannot really tell you a lot about what the condition is, I am still unclear on the details.  All I know is that the heart pauses could be linked to this, not neccesarily the Chiari.  I am remaining very optimistic that once Kelsey’s 4-6 month healing period is behind us, her symptoms will clear and we can hopefully close this chapter.  We will know more in the days ahead, and I will do my best to update those of you visting this site.

As for the rest of the band, all is well.  Cambrie is growing and coming along very well.  She and I will sit in the floor each evening playing with her toys.  She can’t sit up from a laying position, but if you sit her up, she has great balance.  I had forgotten just how amazing it is to watch a baby learn new things!

Callie is doing well also.  She is preparing to move up to level 3 on her gymnastics team, and she is so very proud of herself, as am I.  We are about to break for the summer with her homeschooling, hopefully that will ease a little pressure on Nicole.

As for Nicole, she is researching Kelsey’s conditions more now than ever before.  Not a day goes by that she has not turned up some new information or made a new contact that shares the struggles that we are going through.  This is a further testiment to what a strong and tremedous mother she really is.

That’s about all for now, but I will be back later with a report from the doctor visit.

A.

Good Afternoon All,

Nicole and I met with Dr. Long this morning to discuss the implanted loop recorder I mentioned last night.  After he spoke to Nicole yesterday he continued to research the ILR and learned that it is designed to begin recording anytime there is change in normal activity.  This means that it will only begin recording when her rate drops below the preset parameters or when it pauses.  What it will not do is record an entire days events.  Therefore, this type of monitor will only show us half of what we want to see.  Dr. Long is hypothesizing that the pauses are a result of the lowering heart rate.  He believes that as the brain begins to recognize that it is not under pressure any longer and her rate comes back into a normal range, the pauses will decrease in frequency and length.  Since the implanted monitor will not show what is going on every minute of the day, he does not feel it is worth the surgery to implant it, at least not for now. 

So, we are basically back at square one.  For me, trying to remain as the eternal optimist, I feel this is one more item that we have ruled out as an option.  In trying to solve a problem you can attack from several angles.  For me, marking off things that will not work is just one way of solving this problem.  We still do not know what WILL work as a monitoring system, but at least we know what WILL NOT work.  We spoke about the Polar training monitor that Kels has been on for a few days, and he told us not to use it.  First of all, it is designed to be used by teens to adult aged people, primarily during exercise.  We knew this, but we had to try it, as it was our most viable option at the time.  Since it is susceptible to many different types of interference, it is very hard to tell what is a heart pause or what is just white noise.  The halter monitor that we used after our first meeting with Dr. Long is not an option either because it has to be downloaded in their office after every 24 hours, and there is some much data it would be like looking for a needle in a hay stack.

Now what?  You tell me, becaue we don’t know.  I do know that Dr. Long is working very hard on finding a solution and even after only a few conversations with him, I trust his ability. 

I’m at work now trying to update the site, so I feel I may have left out some details.  When I get home later I will re-read this and most likely edit it to make the picture more clear.  Thanks for checking on Kelsey, I’ll let her know you stopped by.

A.