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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.

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