Posted by: Anson | August 30, 2010

August 30, 2010

I am making this brief update to let everyone know of our upcoming trip. Nicole, Kelsey and I will be heading to Salt Lake City, UT on Thursday Sept 2nd for a visit with a pediatric neurosurgeon who has experience with the type of surgery that has been recommended for Kels.

I stress the word recommended for a couple of reasons. It has been mentioned to me by a couple of people that they had heard we already had a surgery planned for this trip. The only mention of a surgery date was of a pure logistical nature. Since we are traveling from the other side of the country, the doctor wanted to insure, if he needed the time, that he would have her on his calendar in case a surgery is found to be necessary. He never implied or encouraged us to prepare for a surgery upon arrival.

Once we learn more and I actually have something to write about, I will be back up to give all the details. Until then, I ask all of you that frequent this site not only pray for Kelsey this week, but also please pray for a dear freind and his father. The Burdette family is in the midst of a very tough time, as Mr. Burdette is fighting a good fight, but the Lord is preparing him room. I am so humbled by the prayers, kind words and show of support for Kelsey, but there are others in this community who need just as much.

In Christ,
A

Posted by: Anson | August 4, 2010

August 4, 2010

I just loaded an application that let’s me post to this site from my blackberry. There is no substance to this post, I’m merely trying this out.

Posted by: Anson | July 3, 2010

July 3, 2010

Here is the image I was talking about earlier.  In my opinion, it clearly shows where the problem lies.  We met with our local neurologist last Wednesday and he said he can the issue as well.

What you are looking for is the black spot at the top of the spinal column. You can clearly see how the brain stem is being bent around this bone.  From any untrained eye, you can not tell if the bone is resting against the brain stem (basilar impression) or pressing into to (basliar invagination).  The two specialist that have concurred on the diagnosis say she has the later, the bone is in the brain stem, complicating any corrective surgery.
Just a short update today, nothing really to report on, but I did say I would put the image up here.

A.

Posted by: Anson | June 29, 2010

Monday June 28, 2010

Good evening to all my family, friends and any first time visitors,

For those of you who are regular visitors to this site, you may have noticed I write in the same pattern, ie,  I make a statement and apology for not posting in a while, then give details about how Kelsey is doing and what stage of treatment we are in, then a brief rant about something I have experienced personally and I close with thank you’s and specific prayer requests.  This one is going to be a little different.  I am going to open with a confession and move straight into why you came here, the update.

Over the last two months I have not wanted to update this page.  I have had the time, and the information, but I was foolish to believe that if I didn’t talk about it, it would all go away.  That was a selfish error in judgment on my part and for that I ask for your forgiveness.  So many of you love, care and support us in so many ways and for me not fully explain what it is that you are supporting is not fair to you.

The last post in April was written while we were in an airport, in transit from Iowa City back to Savannah.  As a reminder, we made that trip upon a recommendation from Dr. Bolognese from the Chiari Institute.  He said if we wanted a second opinion, then our best and quite frankly only option was to see Dr. Menezes at the University of Iowa.  We went mainly with trepidation, along with slight anticipation and exhilaration of what could possibly be the final chapter and post to this site.  The diagnosis from Dr. Bolognese, who now be referred to as Dr. B, was that Kelsey has basilar impression or basilar invagination, which means a bone is pressing on (impression) or growing into (invagination) her brain stem.  He also suggested that she has cranial instability due to the previous two surgeries.  I will circle back around to this is in a moment.

Dr. Menezes is a brilliant doctor.  If you Google basilar impression, you will find his name over and over again, I know, I did it.  We were warned going into the appointment that Dr. M is very blunt, an in- your- face kind of guy.  He is proud of his accomplishments and is not afraid to tell you so.  I’m okay with that, I too tend to be a little too blunt myself (someone actually called me “uninhibited” recently).  Straight forward he was, blunt maybe, but not scary or rude.  He was very professional and courteous.  His focus was solely on Kelsey.  When he asked her a question and Nicole or I tried to answer, he would “sush” us and repeat his question to her, he wanted to hear what she had to say, and I liked that.  After a brief physical examination of Kelsey, he turned to us and said, ” Who wrote the book on basliar invagination?  I did.  Why did you come here?  Because I am the best.  I know what I know, and I know what I don’t know and I know she does not have basilar impression or invagination.  Cranial instabilty?  I can see that, but there are no issues with her brain stem.”

Imagine all year you have been told a man in red suit with a big belly and long white beard is going to bring you something, maybe a guitar.  The first time you hear it you get excited.  The second time you hear  it, you begin to believe it.  The third time you’re told it will be an electric guitar, then the fourth time you’re told it will be a red Fender guitar.  Finally you meet the man in the red suit and he says, “who ever told you that was wrong, there is no guitar here, sorry, can’t help you.”  From the first surgeon in New York to the radiologist in Florida to the geneticist in Baltimore to the spinal doctor in Baltimore, all we heard is that she has something on the front of her brain stem, but no one was exactly sure what it was.  Finally Dr. B puts a name to the bone and sends us to have it confirmed and we are told everyone else was wrong.  How do you process that information?  The expert of all experts has gone against 4 or 5 specialists and you want to believe someone, but you don’t know who.  That is why I have not updated this site.  We have been telling everyone for quite sometime, at least a year, probably more, that there is some type of abnormal growth around her brain stem.  We share with everyone our excitement of finding the one guy who is an authority on this matter and we have to travel 1.000 miles to see him.  Everyone was praying for us and supporting us and then I had to tell them we were wrong, there’s nothing wrong with our daughter after all?  I couldn’t face it, I began feeling that maybe it was all in my head. Maybe the monitor we are using every night is not the right equipment and it has been giving off false readings.  Maybe everything Nicole sees during the day is not happening, that she is just being overly paranoid and Kelsey is actually doing fine.  Maybe the only reason we had to call the paramedics a few months back was because she got a little excited and was just really tired.

That can’t be, can it?   The answer is No, it can’t be.  From April 18th until June 12th, that has been the constant battle in my head. each time I heard the monitor alert at night to the time Kelsey couldn’t walk more than a 100 yards, all I could think was is this real or is it just normal and  we don’t recognize it as such?

After we returned from Iowa, Nicole would not accept that all we were dealing with was cranial instability. The instability is from a combination of things.  First, her two Chiari surgeries required that a portion of her skull and C1 and C2 vertebrae be removed.  Secondly, the muscles from the back of the head to the neck should be in one continuous sheet, her are separated along the incision. Lastly, due to the Ehlers Danlos, her tissue is not as strong as it should be. This is part of the reason you see Kelsey now with the blue and white Miami J collar all day, every day.  She also has a soft collar to sleep in.

She had another MRI done in Jacksonville, we had two conference calls with our geneticist, one conference call with Dr.B and finally our case was accepted by Dr. Henderson in Bethesda, MD.  Dr. Henderson is not a pediatric surgeon, adults only, but he had heard about us through Dr. Franacomano, the geneticist, and was generous enough to see Kelsey.  So, once again, Nicole and Kelsey, this time accompanied by a dear friend, Pam Corbitt, head back to Maryland for more testing and consultations.  Dr. Henderson did not review the notes in great detail from the previous two specialist, he wanted to evaluate her and draw his own conclusion.  Afterward he compared his findings with that of the Dr. B and Dr. M.  The final outcome, Kelsey does have basilar invagination.  Since Dr. Henderson is not a pediatric surgeon, he advised that we locate one that has experience not only with basliar invagination in children but also with Ehlers Danlos, which is proving to be quite difficult.  With Dr. Henderson’s help, along with that of Dr. B we are sure we will be able to find someone with this experience.  The recommendation now is that we allow Kelsey to grow as much as she possibly can, but he feels that she will require a surgery within the next few months.  He said as long as all of her symptoms, the dropping heart rate and oxygen levels, remain the same and do not worsen, then we have longer.  But if things were to progress more rapidly, then we will need to operate sooner.  The concern for us is that if something were to happen here like we had in March of 2008 the ICU may not release her and they would want to treat her here in Savannah.  While I am not degrading the medical care available in Savannah, it has been such a journey finding doctors with experience with this condition, if one was here in town, we would have met by now.

I am not sure exactly how to explain the procedure that she will require, but I will do my best.  She needs to have her head lift up and forward.  This will move the bone away from the brain stem and relieve the pressure it is placing on the stem.  Once the head is in the correct place, her spine will have to be fused to prevent the head from settling again.  It has been discussed that they may have to go in through her mouth and remove a portion of the bone.  However, since the bone is actually in the stem versus resting against it, that procedure will be to risky.  Once we have identified a surgeon, that option may be reevaluated, but for now it is not an option.

I had heard the terms for months but never really understood what it meant until a few nights ago.  As I came in from work one evening, Nicole was seated behind the computer comparing Kelsey’s MRI scans with that of normal brain stems scans she found online.  As she began to explain to me what she was looking at, I tuned out as soon as I saw this large black “node” and over exaggerated bend in Kelsey’s brain stem.  I am not a doctor, but I can compare two photos and a straight brain stem from one that looks like a banana.  By seeing the shape of the stem and the size of the bone that is pressing into the stem, everything seems so clear now.  I have a copy of the image I want to put up here, but the size is to large to upload. I will figure that out and post it as soon as I can.

Recently, Nicole was contacted by a writer for the Spirit newspaper and an article was ran on the front page about Kelsey.  The kindness of the writer and the staff of the Spirit is greatly appreciated.  Some who have seen the article have asked how or where they can contribute to the benefit of Kelsey and her expenses.  Our church, Grace Community Church in Rincon, GA, has always been the one to receive funds such as this on Kelsey’s behalf.  I do not want this to come across as a solicitation for funds, so that is all I will say about that (until Nicole directs me otherwise).

I had more to say, but it has gone into the early hours of the morning and I need to close for now. Nicole will proof read this post for accuracy on Tuesday and I will be back that night to correct any errors.

In Christ,
A.

Posted by: Anson | April 18, 2010

Sunday, April 18, 2010

I’m sure there have been a few hits here wanting to see how the appointment in Iowa went. All I will say tonight is that we learned a few things and also left there a little more concerned and/or confused than before. We (I) are (am) still processing the information and trying to verbalize it so I can post it here in a manner that is easily understood. Most posts, I sit at the computer, log in and just start typing. Others, I actually think about for days and get the phrasing right in my mind then type it. The next post will be the latter.

Thanks for the continued support, it does mean a lot and if we seem to have forgotten to say “Thank You” lately, please accept this as a small conveyance of our gratitude.

In Christ,
A.

Posted by: Anson | April 15, 2010

Thursday April 15th

Happy pay the politician day! Don’t worry, I won’t be making any political statements on this site.

Just a quick note to ask for a small prayer to be lifted up. One of my mother-in-law’s friends was gracious enough to offer us buddy passes for this trip to Iowa. In doing so, however, we have to fly standby, and apparently Cedar Rapids is a hopping joint! The flighyts from Detroit to Cedar Rapids are all full. We missed our 4:00 by literally 9 seconds. The attendant was checking us into the flight and 3 people showed just as she was about to let us on the jetway. Now, there is an 8 pm with only 2 seats available. If nothing else Nicole and Kels will get there tonight and get a good nights sleep and I will join them in the morning. I definitely do not want anyone to miss a flight, but I’m hoping one more seat presents itself for the 8 pm so we can all go together.

That’s all for now, the real update will come over the weekend when I report on what the doctor said.

In Christ,
A.

Posted by: Anson | April 14, 2010

Wednesday April 14th

Hey gang,
I’ve waited long enough, have been asked too many time, and finally decided I would sit down tonight and update Kelsey’s site.  Primarily because tomorrow we leave for Iowa.

After our visit with the Chiari Institute, Dr. Bolognese told us if we wanted a second opinion there was only one other person in the US that was qualified, ie., seen enough cases, to make a educated diagnosis.  We thought this through and contacted Dr. Menezes in Iowa City.  I emailed him a report of Kelsey’s condition and sent her most recent MRI’s along with recent medical records.  Upon reviewing that, he suggested we come out to see him.  Not because he was overly nervous or concerned, but because the diagnosis will require further examination and explanation.  That’s where we stand today, about to board another plane to continue our quest of seeing this entire country one hospital at a time!

Since the last post, which was quite a while, things have been normal.  She’s had good days, she’s had not so good days, and an intermittent terribly day or two.  About 2 weeks ago Nicole called me around 10 am to say Kels had not awakened for the day and she was a little worried.  Kelsey is the second one up, of the children, so something had to be abnormal.  Nicole woke her, dressed her, placed her in the car and drove to town and Kelsey barely made a sound.  When I finally met up with them, Kelsey was a dish rag.  Her arms and legs were splayed about, almost lifeless to be brutally honest.  When I called her name, she was struggling to focus her eyes on me.  By the time we were seen by our doctor, it had all passed and she was coming back to normal.  This is virtually the same scene as back before Christmas when we called the ambulance to come get her.  By the time the EMT’s showed, it was over.  I said all that to say, life is the same here, nothing better-nothing worse.

I will be updating after we visit with Dr. Menezes to let you all know what we may be in store for next.  Thanks for the continued prayers and support.

A.

Posted by: Anson | February 9, 2010

Tuesday, February 9th

Hello all,

I said in my last post that I had left out details and that I would be back here with those details later.  I’m not sure if it has been subconscious procrastination or just me not knowing exactly how to explain the rest, but I have not wanted to post anything for a few days.  Part of me is still struggling with what I heard and saw during our last visit and the other part is having a real hard time believing that all of this stuff is happening to an otherwise healthy, happy little girl.  Nicole has asked me repeatedly to come back and fill in a few holes, so upon her request, here goes it:

I said last time that Kelsey’s main problem is a compound issue.  One part is comprised of the basilar impression, the other is the Ehlers Danlos.  The impression is the physical part, a bone being pressed into the brain stem, aggravated and exaggerated by movement.  The Ehlers Danlos, going forward referred to as EDS, is the condition which is causing her connective tissue to deteriorate, intensifying the cranial instability and causing excessive scar tissue to form around surgical sites and around the bone that is pressing into the brain stem.  The more the bone rubs the stem, the more tissue will build up, making the bone to gain mass, causing more tissue.  I spoke about the braces that Kels has been prescribed.  The first, Dr. Bolognesse said was close to Mid-evil torture.  This is jacket worn around her chest with a bar in the front and rear tied to a neck brace, or trach collar.  The idea is to lift the skull off of the vertebrae, straightening the spinal column and alleviating the pressure of the bone pressing into the brain stem.  The second device is similar to the first, minus the chest component, to be worn in the car.  Why am I telling all this again?  To warm my mind back up to tell the rest, bare with me.

Due to the severity of the basilar impression and the uncertainty of exactly how much force will cause the bone to penetrate the stem, or a what incorrect angle will cause the bone to penetrate the stem, Kelsey has been placed on a very limited range of activities.  This is really tough for a number of reasons.  One, Kelsey loves gymnastics.  She was just asked to join the pre-team at the gym Callie goes to.  She was so excited that night, she could hardly wait to get home she had to call and tell me over the phone.  All I heard for weeks was that she was now a “team gymnast”.  Imagine the heart ache that followed when she was told she cannot go to gym, but that we will find her a new activity that “is just a fun, even better, than gym.”  Your dog dies, you don’t want a new one, you want Ruffles back, right?  Same reaction.  She can no longer play in the bounce house that she was given for her birthday a couple years ago.  She cannot go on the water slide that Nicole uses for birthday parties.  She can not ride her horse, and she dearly loves Nina and Nacho.  Well, she can ride them, but only at a walk, what happens if the horse spooks and runs, you can’t plan for that.  She could wear a helmet, but that only protects the brain from impact, it does not prevent the skull from being forced down onto the spinal column.  These things sound minor to you, maybe.  I’m a logical thinker, no emotion. Those that know me know that is possibly my worst trait.  I see a problem, I find a solution, no dwelling, no crying, no emotion, cause and effect, simple as that.  But it’s not that simple.  This is a beautiful, energetic child who has no idea why we are doing to her what we are doing.  Oh, we’ve said the words, but the comprehension is not there.  She is four, but cannot do as a normal 4 yr old does.  There are other activities she is limited to, but I think I have made the point, so moving on.

The braces are to be worn for an undetermined period of time.  Three to four months, then she will be reevaluated to see if the lifting motion is alleviating the symptoms.  My first question to Dr. Bolognesse was, “Okay, if the braces do not prove your theory, then what?”  He is confident that the basilar impression is the culprit.  Therefore, the next test, in his words, IS Mid-evil torture.  She will be sedated, laid flat on a table, and a screw will be placed into each temple.  He will then attach a rope to the screws, run that rope through a series of pulleys, sit Kelsey up, WAKE her up, and begin adding weight to see how the heart rate and respiration rate respond.  Think I’m making this up?  My mind doesn’t operate like this, I still can’t believe that would be an option.  That should prove the theory that the basilar impression is causing our issues.  From there, the surgery I mentioned last time will be done.  This is the surgery that has two options of entry points, either the site from which the first two were done, or through her open mouth, through the back of her throat, directly to the bone that is pressing the stem.  The torture continues.  During recovery, she will be placed in a halo collar, you’ve seen them, the shoulder collar with bars leading up to a ring around the top of her head.  This device could have to be worn for many months.

Okay, so that is that portion.

Next, is the EDS.  Kelsey is a 6 of 10 in the ranking for EDS.  This means that her connective tissue lacks more than 60% of the strength it needs, for a simple explanation.  Nicole can be more detailed, but I think you get the point.  Since that is the case, it has been recommended that Kelsey go through physical therapy to help strengthen her neck muscles, to better support her skull and compensate for the cranial instability.  Numerous people with deep knowledge of EDS have suggested that we get treadmill type pool.  It is a heated pool that has jets that allow you swim laps while staying in one place.  Given the fact that Nicole was told by the same geneticist that diagnosed Kels EDS that she too is a 6 of 10, we are discussing this pool as an option to help relieve her pain also.  They are expensive, so I have some research to do on these.  The treatment of heated water combined with the exercise swimming provides will be a great tool in preventing the last thing that I will mention tonight.

Kelsey shows a good amount of cranial instability for her age. This is attributed to the first two surgeries and the EDS.  I have already commented on the necessity of those surgeries, no need to do that again.  There is a possibility she will outgrow the instability.  There is a possibility that the EDS will progress faster than she can grow and prevent her from outgrowing it.  If the later is the case, a spinal fusion has been mentioned as a option.  You have seen people with a spinal fusion before, their necks appear to be sunken down to their shoulders and when they look left or right, up or down, they have to move at the waist, not at the neck.  This is probably the part that I hate, absolutely hate, the most.  I cannot, for the life of me, imagine ever doing that to Kelsey.  What type of ramifications will that have on a bright vibrant full-of-life child?  Nicole has asked me since last week if I have updated the site.  I haven’t, mainly because she wanted this part mentioned and I have a serious problem even talking about it.

If my tone seems more coarse tonight than normal, its because it is.  I have been in a mental battle with this entire situation since about 2 pm Friday January 29th.  I don’t talk about it, or at least try not to.  I guess if I don’t speak it, then it’s not real.  I have been trying to imagine what her life is going to be like after we get these braces on Thursday.  Not only her physical play and pleasure, but the aura that surrounds her.  All three of my girls are special in their own ways, no favorites, no free passes for any of them either.  But there is something about Kelsey magnetic personality that I feel just will never be the same.  Who knows?  What I do know is that here is a problem that I cannot find a solution for and it is tearing me apart.  My faith is remaining strong and growing stronger.  God has a plan for this, that I am sure.  I am now wondering if part of His plan is for me to rely on Him for the solutions instead of finding my own.  Wesley talked Sunday about prayer.  I know God can heal Kelsey without a scalpel or a brace, all I have to do is continue to ask for it.

In Christ,

A.

Posted by: Anson | January 29, 2010

Friday, January 29, 2010

Hey gang,

**I started typing this, got to the results of today’s meetings and realized how long this will be.  You will need a few minutes to get to the end, but this one is really worth reading in its entirety.  **

At least we weren’t told, “Well, I’ve never seen this before.”  That is a phrase that has become all to familiar lately, but after the past two days here in NYC, the theme has changed.

Yesterday, Thursday 28th, started very early.  We knew to expect the unexpected with regards to traffic, so we were out by 6:00 am.  The weather was calling for a clear but cold morning.  About the time we hit the George Washington Bridge, it was snowing harder than I have seen in quite a while.  The only reason I point this out first, is because we had told Kelsey we were going to NY to see snow; the weather report was calling for no snow; we got 2-3 inches before she was sedated.  A great way to begin the morning. We also had a very funny thing happen on the way, but you can’t tell Nicole I was the one that told you this.  You know she is tired, her mind has been totally fixed on Kelsey and not much else for a long time. Before we left, she grabbed a Starbucks chilled coffee from the refrigerator, one of those in the glass bottles with the twist top.  We had driven about 3 miles from the house when I heard her take the wrapper off the lid, pop the seal on the lid THEN shake it up!!  Her only words, “Really?”  We are driving our cousins Porsche Cayan, very nice car, and she tries to shake a full chilled coffee with the lid OFF.  I told her that it wasn’t funny then, but in a few days it will be hilarious.  Anyway, moving on………

Our biggest fears have been when we have had to put her under to do anything, tests or surgeries.  The anesthesiologist was aware of this and took great care of her.  We did have to use gas to initially get her down, which was horrifying for her and very traumatic for Nicole.  We (she and I both) keep seeing Kelsey’s face under that huge mask, screaming for us to hold her.  About 40 seconds was all that lasted, but it was long 40 seconds.  Anyway, without doing a total play by play of the entire morning, I will say that she did very well while sedated, her respiration and heart rates stayed up where they needed to be.  The staff was so caring that they rescheduled a couple of people to move Kelsey up to do her CT while she was still out.  In total, she had 4 MRI’s, 2 CT’s and 9 X-rays all from 10 am to 2 pm.  That was a lot for one little person.

This morning was an early start also.  We had to be on Long Island by 9 am, but with traffic who knows, so we are out once again by 6 am.  This time we take Emily, our 12 yr cousin, to be Kelsey’s entertainment for the day.  What a wonderful girl she is, she treats Kelsy just like her own sister.  Our first appointment was with Dr. Bolognese, the surgeon.  He was a very nice man with a warm and welcoming disposition.  We could tell after about 10 minutes of talking with him, that he had studied Kelsey’s file.  The file, by the way, is literally 6″ thick, we saw it on his desk.  Dr. Bolognese’s greatest amount of concern is not centered around the tethered cord, which we had thought and somewhat hoped for.  Rather his concern is with what he is calling a Basilar Impression.  If you remember a few months, maybe longer, ago I mentioned something that Dr. Feldstien had seen, an abnormal bone growth from the anterior, front, side of the spinal column.  He made us aware of this after Kelsey’s second surgery, but did not know if anything needed to be done, just that it is something that doesn’t appear right.  The geneticist from Baltimore made the same comment, that something is there, she is just not sure what it is.  We have been told this several times, but no one has ever offered a solution.  Dr. Bolognese explained it by saying that Kelsey’s spinal cord is angled to sharply towards the front of her skull.  The cord should be straight as it enters the brain, at least in this particular region.  The bone that everyone has called an abnormal growth actually is supposed to be there, it has a name but I can’t remember it.  The problem is that the bone is too large along with the brain stem/spinal column making too sharp of an angle anteriorly.   What she is experiencing is a compression, very similar to what led to the first two surgeries, expect on the front side of the stem versus the back.  We were also told that her case of EDS, which has been confirmed now by two specialist, will exacerbate this problem in two ways.  #1, with the bone rubbing on the stem, scar tissue is being formed and will cause excess pressure on the stem.  #2.  With the removal of a portion of her skull, a portion of C1 and C2 vertebrae, the EDS is causing an exaggerated form of cranial instability.  Wanna very crude definition?  She’s kind a like a bobble head doll, a very smart, kind, funny, energetic bobble head.  There was no way for the first surgeon to know the surgeries would contribute to this.  Those surgeries absolutely had to be done, we had no other choice.  If, maybe, if we had known of the EDS before the first surgery, things may have been different, maybe.  There is a world of uncertainty around this and it was way beyond the point to debate whether or not the right things have been done. Dr. Feldstien knew he was making the right call in ’06 and ’08, we knew he was making the right call and Dr. Bolognese confirmed today that he made the right call.  He was very complimentary of Dr. F, stating that his work was recognizable in the MRI as conservative, with the utmost concern for the child.

Of all the areas of the brain stem to be compressed, her’s is the area that controls the heart rate and the involuntary control of your breathing, the medulla.  At night, if she is positioned in a certain way, she can cause the bone to press into the brain stem and short out her breathing or heart beat. During the day, any sudden shock downward or upward could cause the short circuit.  One way to think of it is like this:   if you have ever tried to reseat a hammer head on a handle, you do not tap the head, you hold the hammer straight up and tap the bottom of the handle on something, causing the head to force itself down on the handle.  Same principal here.  He also explained why she can ride in a car for 20-30 minutes with no problem, but 1 hour or longer really drains her.  The simple repetitive motion of her head bobbing as we drive will cause a repetitive  tapping of the bone into the brain stem.  Sit on the couch, watch a movie and let someone lightly punch you in the stomach for the entire movie, tell me how you feel after 2 hours.  That is what she is feeling, except that light “punching” is effecting her heart and lungs. This is Dr. Bolognese hypothesis and now we are going to prove or disprove to determine our next course of action.

For the next 3-4 months, an arbitrary time frame, Kelsey will  have to wear a jacket for at least 3 hours a day and a collar in the car.  The jacket will be attached to a collar that will slightly lift her head to alleviate the pressure.  In the car, she will wear the collar, very similar to a whiplash collar, to keep her head from bobbing excessively.  We were also told that anytime she is not wearing the jacket/collar, and she comes to us saying, “Listen to my heart” we should lift her head slightly off of her neck to see if that corrects the problem.  The hypothesis is that we will see a great improvement in her breathing, her heart rate stability, her lack of energy during the day, her reduced body temperature and all the other symptoms we have been seeing.

If we find that the collar/jacket is helping, Kelsey will willing accept wearing it, she will be feeling better than she has in a long time.  If the collar/jacket works, then we have proven Dr. B’s hypothesis to be true.  If he is right, then this means that Kelsey will be in store for what will be the most extensive surgery she has has yet.  The brain stem will need to be moved away from the bone causing the problem and lifted out of the way so that no matter her position, no pressure will be placed on it.  When he goes in for the surgery, he will find one of two things.  Either the bone and stem have been fused together or there is ample room to add distance between the two.  I forget what happens if they are found to be fused together, I just know it’s not good, so let’s pray that is not the case.  There are two different ways he can access the site of the brain stem that is being effected.  Either from the back, through the initial surgical site, which would be recommended, or by going in through her mouth, opening the back of the throat and accessing the site from here.  Just thinking about that is hard to fathom.

As for the tethered cord.  The lumbar MRI showed no sign to TC.  While he feels she may not have it at all, the signs point more toward her having occult TC.  Due to the EDS, there could likely be very thin membranes connecting the spinal cord to the tail bone, but these membranes are so thin they are not visible by MRI.  His suggestion is that we wait for the next growth spurt to see if she has any leg and back pain, loses control of her bladder and has any balance problems.  At this point, we will do a urodynamics test to check for voluntary bladder control and an MRI with her face down, which has never been done.  This should really identify if she has a tethered cord.  Nicole and I were both very pleased that Dr. B did not immediately suggest surgery.  We have read claims and heard others say that he is too quick to operate.  I went into the meeting a little defensive, ready to demand a second opinion (from whom I do not know),but I quickly became less defensive as he explained his process.  He has concern for Kels and has no desire to operate unless it is absolutely necessary.

I have left a few details out, but after all this I think you have been given all you can handle.  Additionally, I was up at 3am Wed morning and 5 am the last two, I’m a little beat.  For those of you who called me after 4 pm yesterday, I was asleep and stayed that way until 5 am today, sorry I missed you. I will be back on here to put up a few more details maybe tomorrow, but for now, that is what we’ve learned.

If I had to make a specific prayer request, as I am often asked to do, it would be that we continue to seek God in this.  It is easy for us to say that we have found the right doctor, or the right prognosis, but we are really just wanting this to all be over.  I also asked that you continue to pray for Kelsey’s immediate and deliberate healing.  We have at least 3 months before any decisions will be made and I know miracles can be done in way less time than that.  I also asked that you pray that she accepts the devices we will be putting on her in good way.  She is a tough, independent kid and is not going to like being held back by anything.

Robert, Kerry, Pastor Wesley thanks for the help getting us to New York.  Shannon and Dave, thank you for being the generous and gracious hosts you have always been.  Scott and Ashley, thank you for doing what you did.  Kaki, thanks for taking the time to stay with Callie and Cam.  Everyone that I have not mention, do not think I have forgotten who you are,  I haven’t, you have made a difficult time more manageable.

In Christ,

A.

Posted by: Anson | January 26, 2010

Tuesday January 26, 2010

Hey guys,

Just a quick update to let everyone know, that doesn’t already, that we are leaving in the morning for New York and our visit with the Chiari Institute.

Kelsey will be sedated early Thursday morning, probably around 7 am, for her MRI’s.  There will be a series of 4 or 5 different scans done, each lasting at least 45 minutes.  This is an area of concern for us because of the experience we had in March of 2008 while she was under anesthesia.  Nicole spoke with the anesthesiologist over the weekend and he now has a clear understanding of our concerns.  He assured us that he does hundreds of Chiari patients a year and he is very familiar with Kelsey’s condition.

Friday we will meet with The Chiari Institute and find out the results of these scans.  At this time, the two doctors will give us their opinions on what they have read in her file.

Kelsey does not know the real reason we are going to New York.  Maybe that is wrong of me, but I will face that later.  As of now, all she knows is that we are going to Aunt Shannon’s to hopefully see snow and go sledding in her yard.  I have struggled with withholding things from her, but each time in the past when I have told her about  a hospital or a doctor visit coming in the following days, she really frets over it.  Some of you may disagree, that’s fine, I have very mixed feelings as well, but this is the decision we have made.  I keep thinking back to March of ’08.  She knew two days before her surgery what was coming.  The morning I put her in her car seat to leave for the hospital, she looked at me with an expression that still melts my heart and  said, “Daddy, I know where we’re going and I don’t want to go.”  She did not say two words the entire 4o minute drive.  I did not leave her side for the next 5 days. She finally forgave me for taking her there.

Since I am the moderator and author of this blog, I occasionally will take liberty and make a few comments that not entirely “Kelsey” related.  This is one of those moments.  I won’t get all preachy and deep-thought-ed, but I am concerned about some things that are close to me and most likely close to you.  Our country is in a very comprised place right now.  Not just politicaly (which I won’t even get into) or economically (again, you don’t want to hear it) but spiritually.  I see marriages all around us under attack.  I see relationships; father and sons, siblings, and life long friends struggle to maintain the cohesiveness they once shared.  Some of my real close friends have found themselves unemployed and it is tearing at the fabric of their lives.  What we once deemed as obscene and unworthy of public viewing is now main stream and common place on any channel you watch or listen to.  I guess the point that I’m trying to make is that spiritual warfare is real.  Satan loves to use the things that are pleasing to the eye, mind or body to tear us apart.  He enjoys seeing a family struggling financially begin to bicker among themselves, it is a way for him to separate a union ordained by God.  As we accept more and more unrighteousness into our lives as the new norm, our relationship with our Savior is weakened.  God said he will never forsake us, and I know that to be true.  But he did not say we will never forsake him.  As we end this day (or begin a new depending on when you are reading) I want to leave you with a thought that was shared with me this morning.

I’m paraphrasing, but it goes:

Today is an investment in my life.  I am choosing to trade my today for something.  The question is, will this something prosper me or harm me?  When I reap what has been sown, and I shall surely reap, will it be glorifying or detrimental?

Not real sure why I felt compelled to share that, but I did and you choose to read it. 😉

I will update this site most likely Friday night, after have met with the Institute and have had time to digest the information.  Until then.

In Christ,
A.

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