I started this post a few days ago on a very different note.  I deleted that post.  I decided that I needed a few days to process and get some perspective.  That perspective came this morning at church.  We are visiting a new church community looking for a new home.  Most of you have heard me refer to God as my Heavenly Father and anyone who is LDS knows that this is a very “LDS” thing.  But to me, regardless of what church community I belong to, God IS my Heavenly Father and I cannot imagine ever speaking to Him in any other way.  For a while now, my heart and soul have cried out for something, anything that felt like home.  Having been displaced from my own home for that past 4 years and ending up giving it up last year has made my soul long for something that like mine.. my own home for my heart.  A place that felt like family and like I could exist there in peace and gain hope and perspective.  I had felt the tugging at my heart for the past year now to visit a certain church that has moved into our neighborhood and I always found a reason to put it off.  Man it is HARD to get up at 8 am on a Sunday after working until 1 or 2 am shooting a wedding but at some you just have to do it.

This morning as we were standing there listening to the worship, I had to fight back tears as I heard these words:

“It is well.  It is well …. through the storms, I am held.  It is well.  It is well with my soul.”

Thinking back to the last 4 years I look back and think these EXACT words.  Through everything, every heartache, scary time, breaking heart, sickening days, impossible choices… it is well with my soul.  Yes, I will admit that my life, until this point may not have been a shining beacon of the perfect “christian”.  I don’t feel the need to be “religious” at all.  I, however, am VERY spiritual.  Yes, so I curse like a sailor … it’s my vice…. but never have I denied the total and complete blessing and grace that my Heavenly Father has allowed me to live under.  I feel no less, “close” to him because i have lost my “religion”.

At any rate this morning’s message was about Discovering God’s will for your life.  Imagine that.  It never fails that He always manages to be JUST where I am and know JUST what I needed to hear!  When thinking about God’s will for our lives people LOVE to quote Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”  but I wonder how many people have read the verse just before that, Jeremiah 29:10 ” This is what the LORD says: “When seventy years are completed for Babylon, I will come to you and fulfill my good promise to bring you back to this place.”  SEVENTY YEARS!!!!!!  God never promised us that it would be quick or easy   I would say that 70 years in Babylon was probably HARD, wouldn’t you?  If you think about that there is power in those two verses but some people like to read as selectively as they hear.

Or take for instance, Paul.  ^{Acts 20:23-24} “I only know that in every city the Holy Spirit warns me that prison and hardships are facing me. ²⁴ However, I consider my life worth nothing to me; my only aim is to finish the race and complete the task the Lord Jesus has given me—the task of testifying to the good news of God’s grace.”  Paul went into the journey, knowing full well that he could be imprisoned.  I think about life and how very familiar this feels.  We went into Kyleigh’s Morgan’s life KNOWING full well that “hardships” laid ahead.  Not that anyone ever really could have imagined this but it is what it is. The next verse is what Kyleigh has taught me… my only aim in life is to finish the race and complete the tasks that Jesus has given me.  Truly.  People ask me if I was scared that Kyleigh would die and you know this verse is what best describes my LACK of that fear.  I know that my daughter was sent here for a big, amazing purpose and I cannot help but think that her purpose cannot possibly be done yet.  I cannot wait to see the testimony SHE will have from her own voice when she is old enough!  So for now, while I don’t know WHAT that plan is… I know that there IS ONE and that is enough.  I will continue to fight, the run, to move forward and to believe that everything will be just fine.

So that is the back story to this next part.

Part B: You know I feel a bit like a broken record today.  Sadly enough Thursday was  NOT a day unlike any other.  I have been here before…. felt this way before… cried these same tears before.  Too many times as a matter of fact.  We made our mecca to Cincinnati as we do twice a year for Kyleigh’s continuing Urology treatment.  Kyleigh underwent a VCUG (VoidingCystoUrethroGram), formal Urodynamics, Renal Scans and Lab work.  The battery of tests that my daughter undergoes each 6 months are NOT pleasant and I cannot believe that she takes them all in stride like she does.  It would send many a grown man crying from the room to have to endure them but she does it, not because she wants to but because she must.  And she gets some lousy stickers in return yet she is THRILLED when she finds someone who has a princess.  Mommy thinks she deserves way more than stickers!!!

Conclusion: My daughter is again VERY sick.  I knew in my heart that things were not right but everyone kept insisting that she was fine.  Me, I am the mommy.  I have that instinct… I knew.  Off to Cincinnati we went for her semi-annual Urology testing and check in.  Kyleigh has been monitored by Dr. Shumyle Alam at Cincinnati Children’s since she was 16 or 17 months old.  That was the first time he saw her bladder and it was admittedly one of the worst he had ever seen.  In just a year and a half my daughter’s tiny body went a long way toward totally destroying her bladder and kidneys.  At almost 5 years old her body is still attacking itself and her bladder is still failing.  Her kidneys are getting worse.  It’s time to pull the plug on the whole operation and stop the progressive worsening of her bladder and kidney which could eventually cause her to need a transplant or even bring her life to an end.

What is WRONG?: Kyleigh has what is called a neurongenic bladder.  But there are various WAYS in which a bladder can be neurogenic.  We know, beyond a shadow of a doubt that the combination of having a tethered spinal cord for almost two years and having TWO back to back open heart surgeries has left her with nerve damage that is impeding her bladder function.  A bladder is a muscle… like a heart.  If mis-used it can become rigid and scarred.  Kyleigh’s is already there.  WHY she is “continent” we do not know.  There is no reason why… and in all actuality this which we call “continence” is not in fact and it is damaging her kidneys.  Before now, Kyleigh has only ever shown Vesicoureteral Reflux in her LEFT kidney.  Now, its bi-lateral (meaning in both) and worsening by the day.  This is a painful and dangerous thing.  Her labs and GFR are still in the “good” function range for her kidneys so that is EXCELLENT news.  GFR is 114 to be exact!!!   But we know that this number can quickly degrade so we want to do anything possible to maintain where she is now!

How do you fix it?: Surgery, cathing, meds, and prayer.  There really is no other way.  2+ years of cathing, then not cathing, medications, then no meds, has proven to us that her body is not going to play nice and respond the way it should.  Even with interventions she is still damaging her kidneys and bladder.  So… surgery it is.  But some things are still up in the air.  At this point her urologist does not want to operate immediately because we need to test the bladder and see if it will respond positively to meds and cathing.  So back to cathing we go (can you hear the joy in my voice?)……………  within 6 months we will know if her bladder is going to respond and relax or stay rigid and require another procedure on it.  Right NOW… we are scheduled for a bi-lateral ureter reimplantation with a mitrofanoff.  What is a mitrofanoff?  A port in her tummy that will allow her to cath via her tummy instead of from below… as girls get older I think its important to help them maintain as much privacy as they want.  Kyleigh doesn’t even want to wear a DRESS without bloomers or shorts under it so she is a pretty modest cookie.  I support that wholeheartedly!  LOL   This summer sometime we will also go back to Cincinnati for one week for “Bowel Management clinic” with her colorectal surgeon Dr. Levitt.  During that time we will try to see if we can balance her laxatives enough to continue using them.  If not then we will transfer her to an enema system.  If that happens then we will also install another “port” called a Malone / ACE  that will allow her to instill her enemas through her belly instead of rectally.  Now… IF her bladder does NOT respond then she will be facing an additional Bladder Augmentation.  These are bad, scary, hard surgeries with LASTING long term affects and VASTLY increases her risk for cancer (and we are talking cancer when she is YOUNG!!!… that is BAD.)  So we are going to try, with all our might, to stop that surgery from happening… meaning PRAY NOW!

PRAY NOW!!! Seriously… we have never been the people who have asked you to pray for miraculous healing of our child.  We have asked for blessings of wisdom grace and blessings for our doctors and medical staff.  We are asking NOW… that God will allow these interventions to affect her bladder in a way that would ELIMINATE the need for this augmentation.  We do not want it for her and NEITHER does her doctor!!!

What about Dr. Alam? Didn’t you fire him?:  Yes.  Many times I have fired this man.  We have had our differences of opinion and personality, but… and this is a huge but… I swore that I would never let ANYONE operate on my child that I did not FEEL ok with.  It had to be WELL WITH MY SOUL before it was happening.  This time.. we walked into that office and it WAS WELL with my soul.  I think, over the course of some years with him, Alam has grown up a lot as a doctor.  I think I have grown up as a mom and now… I am ok with this.  I am calm.  I have peace and hope and pray that my Heavenly Father will continue to extend His grace to Kyleigh for this next round of surgical procedures.  So in short… Alam and I are good.

The GOOD NEWS!  Yup there is good news… aside from the fact that Kyleigh still has a good amount of function in her kidneys, all of the procedures listed above can be done AT ONE TIME!!!!!  It’s going to be a hell of a long day in the OR and hard on our hearts and nerves but it is best for her.  (see there I go loosing my religion again…)

What can YOU do? People have already started asking to help and I learned a long time ago… accepting help does NOT mean I am too weak to do it all myself.  It means I am SMART enough to let someone help me accomplish things that a single human being, or two or three, is not meant to be able to do alone… so be it!  LOL  We will take all the help we can get!!!

We are currently asking for prayers for the following:

1) Kyleigh’s body and EMOTIONAL state. She broke down crying in the parking lot of Alam’s office when we told her she is not allowed to potty on her own anymore.  The entire weight of the fact that she is NOT NORMAL and will never be came crashing down on her shoulder in that one single minute and part of me died inside.  To look at my amazing girl and tell her that life is about to change again but that we MUST do these things to make her better was not easy and its not going to be the same as when she was a baby.  I MADE myself ok with this before because I resolved that she would not remember most of it.  Now, the stakes are higher.  This is a different ball game.

2) Me and Troy.  Together and separately. Last time we went through something this hard we both (and together) came out barely breathing, marriage a mess and shells of who we used to be.  We cannot go through that again.  We need some good Christian couples to join together with us in faith that God will continue the restoration of our souls through the next year especially.  We also need people to understand that this is NOT easy on us.  The gravity of this situation can NOT be understood by anyone, no matter how hard you try, unless you have been there.  That makes for a very LONELY feeling. Pray also for our physical bodies.  Just recently we have decided to try and get healthy again but having very little time to ourselves makes that hard.  Eating on the road, in hospitals, at hotels, is not great… also, every single time I am in the hospital with Kyleigh the stress of the situation gets to me and I end up sick somehow.  Everything from strep to GI bugs… we do NOT need that for Kyleigh or for us!

3) Financially we were JUST pulling ourselves out of the whole that Kyleigh’s first three years of life put us in.  Last week we became 99% debt free.  This week we are staring down the barrel of a loaded shotgun to our finances and knowing that those bullets are headed our way.  We need a prayer for our finances, and those of our family that help us so much, that God will bless us with abundance and the ability to handle another impending financial strain.  We have no idea where the money will come from but we know that given the choice between our daughter, and the WORST possible financial situation in the world, we choose her… always have, always will.

4) Pray for our doctors, surgeons, nurses, medical staff. Pray for every single person who will come into contact with our daughter.  Pray that God will richly bless their lives, their finances, their families, their homes, their hearts and their practices.  Pray that God will strengthen and increase them with good measure.  That their cups would be full and overflowing.  Pray that God will give them wisdom and clarity of mind when dealing with anything about our daughter.  Pray that they will be careful, caring, considerate and concerned.  Pray most of all that their hand will be blessed with skill to do not only a good surgery and procedures but FINE ones… ones that make everyone else astonished!  Pray most of all for Dr. Alam, Dr. Levitt, Dr. Breech (always Dr. Joe) and call them by name as you pray.  I truly believe in a purposeful prayer!!

5) Pray for our boys. This is different for them also as they too will remember this time.  This will upset their lives.  They will be in school and will have to deal with normal daily stresses at home while we are gone on top of NOT having their mom and dad home.

6) Pray for my parents that they would be blessed with peace, courage, kindness, empathy, FINANCIAL blessings as they will be caring for the boys when we are gone (and man let me tell ya my kids eat a LOT!)… they need peace in this situation too because it stressed their hearts also.

7) Pray that everything will happen according to our Heavenly Father’s perfect plan and I can’t help but find myself hoping that His PLAN includes an uneventful, successful surgery, easy recovery and alive and WELL child afterward.

Eventually, once we have a surgery date, we will post more about the kind of help we will need while we are gone to Cincinnati.  I know that we have found an amazing group of friends in the Lord and I am so happy to know that I can rely on the Body of Christ to help take care of our family.  We will definitely need help with the boys here, trying to find fun things to distract them on the weekends and give my parents some “down” time.  We are hoping to create a schedule for them while we are gone so they have something to look forward to!  Anyone willing to hang out with our kids or take them to do something fun, please feel free to email me!    schmidt.amber@kentuckystudio.com

Also, after surgery is planned, and the final testing is done this summer we will know more about how LONG we will stay in Cincinnati.  I know we have had such generous offers to stay in the homes of some dear friends.  We WILL be taking you up on those offers!!!!  Seriously.  Kyleigh will be in the hospital for a significant number of days but after that we will have to stay LOCAL for a while longer.  I will try not to wear out our welcome anywhere!! (hopefully!)

For Kyleigh:  of course Kyleigh is a girly girl.  Many times before we have received packages of goodies for her surgeries and we will never turn away surprise boxes for her!  Simple things like stickers, coloring books, play doh, markers, my little ponies, princesses ANYTHING! etc go a long way for a child who is bed bound!  She in love with all things princess, barbie and girly!  That pretty much sums her up!  LOL

Our family is also planning a last trip to Disney before surgery in January (we are slated for January right now.. we COULD do it as early as November but I need time to wrap up the fall wedding season!).  We are planning the week before Christmas like we did last year.  We went and REALLY enjoyed it.  If you have any tips for saving money, finding a good (cheap) flight, know of a cheap (nice) place to stay, PLEASE share!!  I need to save as much money as I can at this point but we want to give our kids that one last “hurrah” if you will before their lives change again.  (Notice the theme here is cheap? LOL)

So…………… I think that should answer a lot of questions or I hope it does.  If anyone ever has any other questions please feel free to ask.  We are not scared of answering, nor does it UPSET us.  As a matter of fact sometimes its feels good to talk about it.  So do not ever feel like you are bothering us with them.  If I don’t have time I will politely tell you so!  LOL   The comings months are not going to be easy but then again Heavenly Father never promised us easy.Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• January 3, 2012 -- Kyleigh turned 5!!!
• January 3, 2012 -- Blessed.
• June 24, 2011 -- Kyleigh’s dance recital
• March 20, 2011 -- Spring Cleaning…. part two… Kyleigh’s room
• March 13, 2011 -- “aren’t you just beside yourself happy?”

So am I really HAPPY about this latest news?!  Well I guess I should tell you what that news is… Kyleigh does NOT have VACTERLS association linked to MITO.  We are at least 80% sure of that.  Which also means that Kyleigh’s VACTERLS is NOT “incompatible” with life.  Lamens terms… my daughter is going to LIVE!  This VACTERLS will not kill her.  She will grow up.  She will dance and date.  She will learn to drive and go to school.  She will get a college degree and get married and have children of her own.  And that brings instant tears to my eyes.  I am… so incredibly happy that it does not feel real to me.  For so long we lived with this big cloud of “what if” ?  Maybe a large part of me refuses to allow myself to FEEL the way I WANT to about it because every time I do the rug is pulled right out from under me and I end up broken all over again.  This huge part of me wants to jump for joy and tell everyone on earth but I manage to stay here with a quiet smile and reservation.  Somehow it’s like announcing this is saying that God worked some big miracle… which He TOTALLY did and I am thankful for it… but I hate to declare this big piece of news for fear that some day… all too soon… it will go away for one reason or another.  I want to keep this treasure all to myself because telling everyone feels like they are stealing little pieces of it and part of me must be SO selfish to want to keep it with me always.

Lets back this story up a bit and start a few months ago, probably about the time of the last post on this blog!  Kyleigh was experiencing increasing pain (and still is) and was having REAL trouble tolerating the heat of the Indian Summer in Kentucky (which I am sure is headed our away again all too fast).  A friend of mine said “You MUST go to the NIH and meet Dr. Ben.”  Yeah yeah yeah… I thought to myself.  How much more could he possibly tell me that we don’t already know about this kid?  I mean really.  I have become a bit jaded about the medical community.  I have this kid and she has all these problems and no one can fix them (completely) and no one knows WHY or HOW half of them happen… so WHAT’S the point?  I love our Doctors and nurses but I also go through phases of not wanting to have anything to do with ANY of it.  I have a “mommy fit” if you will and decide that the best thing for my kid is just to ignore this whole “sick kid” world and maybe it will all just go away.  But then, I try to assimilate into the “normal” world and it hurts all over again when I figure out that she (we) don’t fit in there either.  Those people just don’t get it.  They look at you with pity or disgust or worse yet, envy because your kid gets privileges that theirs doesn’t.  (I mean really… do you KNOW what my kid has been through???)  That in an of itself is painful and unjust and you just want to shield your child from it.  And then you wonder how on EARTH you can ever allow her fragile little self to go out and willingly be hurt by the critical stares and comments from unknowing people.  You work SO hard to protect her from all this and then everyone just wants you to willingly subject her to someone you KNOW will hurt and will not be easy?  Isn’t this what we have spent her whole life fighting against?  It’s HARD and it HURTS and I just want to sit and pout some days.  Some days I do just that.

So when I have these mood swings we just lay out of hospitals, research, and I hate to admit it but we hang back from our “sick kid” friends too.  That is where we have been and part of my ignoring this blog was ignoring everything on it, in it and surrounding it.  I started this because I needed to tell someone, anyone about Kyleigh and to relieve my mind of the million and one thoughts swirling through it… some days I just don’t have the energy or time to confront this whole thing all over again.

Fast forward to March 6th.  We got on a plane headed toward Baltimore to check in and be “studied” at the NIH.  Glad we went?  Absolutely… anyone with a VACTERLS kid should go do this study!  It really was informative.  It was, however, an intensely tiring week.  We had intended to go over into DC and sight see a bit but we never really did.  Mostly because I didn’t feel good, I was stressed out and my brain and ovaries hurt.  There I said it.  Me… I got in my own way.  Imagine that.  I guess somehow, no matter where we go, no matter what doctors we see, there is always this shred of hope inside you that someone is going to have a magic wand.  You know it’s not true and that the magic wand will likely never come but you still hope and pray that SOMEONE, SOMEDAY will know WHY these awful things happened to your child and most of all will know HOW to fix them.  Every time we go anywhere there will always be this shred of hope that magically she will be better and that all of this will just have been a big nightmare that we will wake up from.  Mostly, we never find that and that too… is hard.

After many scans, x-rays, lab work, ECHO, EKG, and many appointments with specialists, the week ended with GREAT news.  Kyleigh’s VACTERL’s diagnosis is NOT related to Mitochondrial disease which means that it is also NOT likely to be fatal.  This is a HUGE, amazing, wonderful, MIRACULOUS, relief!  I think I am still in shock.  With Kyleigh, we have learned to prepare for the worst, the most difficult, the least expected and often she does not fail to disappoint in those areas.  So every now and then, when you get something that is not even “less than bad” but AMAZING and AWESOME, it shocks you.  So that is where my head is right now.  Shock and happiness.  But the happiness is never untainted in our world.

With every bit of GOOD Kyleigh information, there is always the bad.  And THAT is why it is always so hard just to have your moment of excitement.  Because it is always laced with a million other things that need doing or are are going wrong.  The day before we left the NIH they started Kyleigh on Neurontin.  This is a medication that works with the nerves in your body to help relieve pain.  In 2-3% of patients it is shown to cause diarrhea.  Guess what percent my kid falls into?  imagine that.  She was SO sick all the way home I felt really bad for her.  I had had the instinct just to WAIT until we were home… I should have listened.

So we got to haul through two airports, pooping all the way!  The problem with diarrhea for Ky is that she STAYS borderline dehydrated anyhow… so any little thing like pooping 11 times in 4 hours, puts her over the edge.  Oiy vey… try to fix one thing, break another or two… story of her life.  So now we are home and trying to make SURE it is the Neurontin that caused it and not some random thing she picked up at the hospital.  Today we will start the Neurontin again and see how that goes.

The other news is that Kyleigh’s C-spine is quite messy as well as her T-spine.  We also knew she had improper vertebrae in the T-spine, missing, fused, messed up whatever you want to say but it “ain’t right” is what I do know!  This will make her more prone to scoliosis and back pain.  So we have to watch that but overall this is not a life altering or threatening thing so we cannot complain!

The next thing, and this is rather huge in my book, is that it looks as if, on the ECHO from the NIH, that Kyleigh’s heart patch (a la her first open heart surgery of 2007) has sprung a few leaks.  There is one obvious one but on the ECHO the patch itself is starting to look a little like cheesecloth with tiny leaks all over.  Now, this IS something that we were prepared for.  We knew that she may likely need a “revision” to her heart between the ages of 6-10 but she is only 4.   This is early.  I was not prepared for that.  I was also not prepared for finding out that the ONE part of her body that has been doing GREAT is now malfunctioning AGAIN.  And heart stuff… is scary.  Let’s face it.  Last time I was blindsided and had no idea that I SHOULD be scared.  This time will be worse.  I know what is coming and I know what can happen.  This time I will need more prayers, more drugs and more therapy to make it through should she need another open heart procedure.  We are scheduled to see her cardiologist at 10:30 am to get a verdict on whether we should head off to see Dr. Eghtesady again (this is Kyleigh’s amazing and wonderful Cardiothoracic surgeon in Cincinnati!).  As much as I love the guy… I would much rather keep my butt here at home because as I said before… I am still in the middle of my “mommy fit”.

At any rate.  I am beside myself with happiness.  Anything that does not = death is truly a blessing and a miracle.  At the same time my brain swims in it’s memories of those horrendous weeks spent in the CICU and the pain that Kyleigh was in.  My heart aches knowing that she may have to be up against that AGAIN and that she, again, doesn’t even know it’s coming.  My arms already ache for those hours that she will be lying on that cold OR table and my nerves are already stretched thinly as they can be.

A huge part of me mourns for the life that is continually stolen from my daughter over and over again.  Another part of my is thankful and a large part of me is just as scared as the day we brought her home.  Somehow, even though I have read the guidebooks and own the maps, I am still not used to Holland.  I notice that even the tulips die and that there are more rainy days than sunny ones.  I still long to go to Paris (funny considering Kyleigh’s new bedroom theme!) and I wonder if that stinging pain of that loss will ever go away… sigh.

Say a prayer tomorrow morning if you will.Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• January 3, 2012 -- Kyleigh turned 5!!!
• January 3, 2012 -- Blessed.
• June 24, 2011 -- Kyleigh’s dance recital
• May 15, 2011 -- “It is well. It is well… through the storms, I am HELD”…
• March 20, 2011 -- Spring Cleaning…. part two… Kyleigh’s room

Yes, I know that the mind wanders to the relationship with my husband and I.  Although it has previously been strained… we are good right now.  We are in a good place with a healthy amount of talking, loving, hugging, fighting, debating, forgiving, etc.  All those good things that marriage truly mean… yeah we are all those things now.  Which makes me happy and a bit more calm than before.  Is life perfect?  NOT!  Whose life is perfect?  And if your life IS perfect, I don’t want to know!  Seriously.  I am a little bitter.  I don’t want to know about your perfect house and perfect dog and perfect kid and perfect clothes… I don’t care.  (PS… that was not directed at anyone in particular… just the perfect people LOL)

At any rate I have been very torn about Kyleigh’s health.  She does wonderfully for a while and then she crashes and goes into all sorts of crazy things that make us ask questions we shouldn’t have to ask.  She has been on a good stint lately though.  We have been debating about how to handle her Urology needs for a while now.  We go to her doc and we just walk away feeling empty, confused, scared and frustrated.  There are NO OTHER docs that we see that make us feel this way.  Even with all the HARD things that we have had to hear from so many of our docs we still can only remember a handful of times when we felt this way.  We continue to go around about this doc and his place in our life and in our child’s and we just cannot, in good faith, see him being a major part of it much longer.  At some point we have to fight for her “life” sans daily medical madness…. KWIM?  Just some peace and normal… and shopping!  Yes… my daughter is a shopper and I love it!  I will shop til I drop with her.  It really is bad though.  So bad it’s good   I am just so glad that I get to take her to pick out princess dresses and new shoes and tutus and all that fun stuff!  I am glad that she has a fit in the middle of the store because I won’t buy her M&M’s and then by the time I get to the checkout I feel so bad about depriving her of the only calories she might want to consume that day that I buy them anyhow.  I try and make it into a lecture that makes it LOOK like I am in control but it’s pretty obvious that she rules the roost.  We own that… it’s okay!

So in this time of being still… I have been SOOO busy.  Not much “STILL”  has been happening here in our house as there is always a ton to do, but enough “busy”ness that my mind was still which I guess is the point.  Anyway… I laid down the torch on the medical end of things and just waited.  I had been looking into a few options for Urology and found some promising new procedures and perspectives and then it happened.  Yesterday I opened a piece of junk mail from UK just to see if there was a blurb about the Makenna David ER (obviously close to my heart) and there it was.  Or should I say HE was.

Dr. Ali Mahmoud Ziada.  I already have his name memorized!  He is the NEW pediatric Urologist at Kentucky Children’s.  Yes… so he may just be one of MANY specialists but we have been waiting a LONG time for this day.  4 years to be exact!  I am so proud of our little hospital and so glad to be a part of watching it grow and change.  I am also very relieved that we have new hope for a doc to man the trenches of Ky’s Urological health here in Kentucky.  I don’t anticipate that he will be the savior of my daughter’s bladder but I am truly hopeful that this will be the start of a long, healthy, beautifully communicating relationship with him.  I am very tired of looking for someone to trust.  I know that the docs she sees now are great, excellent even but how can I, in good faith, hand her over to someone that I just don’t feel RIGHT about?  I can’t.  That is the simple answer.  I knew that.  So we waited.

Our wait is over on August 31.  I feel a bit like I am “cheating” on the Cincy docs but oh well.  When it comes to your child… I cannot help what everyone else thinks or feels about them.  I can only do what I know is right and trust that I have someone bigger than ME in control!  August we will meet this new doc and I am so excited.  It always brings a bit of trepidation though… the “what if’s” seems to come barreling at you like flies splattering on your windshield… you don’t see them coming until they are already a mess on the window!  I am torn as to whether to try and track down all the medical records or whether I just want to let this person do their OWN evaluation and go from there.  It is time for her bi-annual VCUG etc so its not like I would be torturing her for no reason.  Who knows… so much excitement and fear at the same time… it’s all very scary yet familiar.Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• January 12, 2010 -- Coming Home!
• October 26, 2009 -- Do not be anxious about anything…
• February 23, 2010 -- So it begins, Kyleigh’s next medical journey.
• December 15, 2009 -- One Day closer…
• October 16, 2009 -- Two down…….. they’re dropping like flies!

So by Saturday AM, Kyleigh wakes up puking her guts up, followed in suit by Ross, then Troy then me.  Luckily I really hadn’t eaten anything for a few days so there was not much there for me, but Troy was violently ill.  He said it was the closest he had ever come to calling 911.

By Saturday night it was apparent that Kyleigh was NOT going to make it through without intervention.  Even with pedialyte in her g-tube she was still dry as a bone and puking.  So, I did what I always do… called Joe.  Mom and Dad took Ky to the hospital and met Joe’s resident (whom he had already briefed on the situation) and I took off to Kroger to get the amazing, wonderful, awesome, beautiful ZOFRAN that Dr. Y called in for us!  Can I just tell you how incredibly thankful I am to have Drs on my speed dial?  I mean really God has BLESSED us with these doctors!

While I was gone, praying all the way that I could even MAKE IT, to Kroger and back, Troy was at home and he said good thing he had passed out because he might have had to call 911 otherwise.  Kyleigh was already gone with Mom and Dad, Owen was with me, and Ross was out cold after a day of being as sick as Troy… so we all took Zofran and went to bed!

I was able to get up Sunday morning and head to the hospital and felt much better.  I arrived just in time for rounds and Kyleigh already looked better!  Which, why wouldn’t she… I think Joe said that she had had 6 or 7 boluses of fluid by that time.  She was STILL barely peeing.  I, of course, was worried about the kidneys, and two hours later Kyleigh removed all doubt and FLOODED her bed, about 5 hours in a row!

All was well, Ky got to eat her B.R.A.T diet and Joe let us come home last night after she lost her IV.  Once again, thank God for him, one of his flock told our nurse that she needed to put the IV BACK IN!  I was like… hold the phone… I am calling Joe!  LOL

At any rate, it was another crazy weekend.  We are home now, Owen is back in school, Ky and Ross are downstairs playing, Troy is at work and I am here, doing what I do… blogging!  All is right with the world I guess!Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• August 28, 2009 -- Another few faves from Gulf Shores…
• October 31, 2009 -- Carving and Couponing…
• August 24, 2009 -- What the world needs is people who have come alive…
• January 3, 2012 -- Blessed.
• August 26, 2010 -- Be Still…

Our neighbor’s child is a full year younger than Ky.  He is still very baby like in his actions and speech.  He is cute as a button but still very much a baby.  When I look at Ky now… she is not.  She will be FOUR this coming year.  She speaks in sentences and ponders life.  She orders her brothers around and demands explanations.  She can be reasoned with although at times she is, like every 3.5 year old, unreasonable.  She is smarter than most, I would venture to guess.  I choose to see my daughter, not as the child who cannot be continent, cannot hold her own stool, has the inability to keep herself hydrated, or consume enough calories to live.  I see her as this amazing miracle.  This beautiful person who we have fought so hard for.  I rarely think about things that WERE without also seeing how wonderful and miraculous those times were.  So even in looking at the “horror” of her life I see beauty, wisdom, grace and miraculous things.

But that single comment and the tone with which it was said was like a dagger.  It hit me without me even seeing it coming.  I had no idea what to do with it once I did see it.  It wounded me.  I realized… that day was one day closer.  To Kyleigh realizing…. that she is not normal.  What will I do when that day comes?  How do I explain to her the reasons why she cannot wear those big girl Ariel panties that she loves so much.  Instantly this glass house that I have created around her illness, that it is positive and good things have come from it and we have been shown miracles and and and…….. it all came crashing down.  How can I ever explain this to her and make it positive?  I can’t.  There is nothing positive about it.  There is no hope for a cure, no meds to coincide, no treatment plan that we haven’t already tried, no surgery that will help, no doctors to consult… I have nothing to give her.  I have nowhere to go and no one to seek help from.  That hurts.  A lot.

Just today, Ky had her morning poop.  Yes… she usually has one a day, unless her meds are off or she is sick… in the late morning.  (these are all things that are very commonplace to talk about in a family with an IA kid… I apologize if they are TMI for you…)  I went to reach for the wipes on the changing table and of course… nada… I go to the armoire… none there either.  I try and send Ross for a new box… hah!  Yeah right.  I really miss my Owen to grab things for me in a pinch situation.  So I left her laying there, half covered in poo (you IA moms KNOW what I am saying here!) and went running to the stockpile room to retrieve new wipes.  I came back and Kyleigh was sitting in the crab position on all fours trying not to put her bum down and get the changing table cover messy yet she was covered… she had poo from end to end and in the course of her panic had peed all over everything.  I could see it in her face… the look of panic.  She had NO idea what had just happened that she peed on herself and her own changing pad.  She was upset and in a way scared because she did not understand it all.  I was upset because I have no conception of how to try and explain.  We both cried.

As I put her in the bathtub I kept thinking… its becoming so painfully apparent now that she is not normal.  Soon she is going to know too and all of the “shadow of doubt” or hope or whatever you want to call it will be shattered.  Right now, Kyleigh believes that she is perfect… and to me she is, but how do you explain to her that she is not perfect in the “eyes” of the rest of the world… and that this problem, this issue, is somehow abnormal.  I worry about people and their painful glances as they realize that an almost 4 year old still wears diapers.  I think about words that are unintentional and just as painful nonetheless.  I am NOT prepared.  I am not prepared to hold my daughter at night when she cries because she wants to be like the other little girls at school.  I am not prepared to watch her run from the school and tell me about kids who said hurtful things.  I am not prepared to try and explain to people in the outside world what is “Wrong” with Kyleigh without also horrifying them.  (because up until now our world has consisted of 90% medical people and they all at least understand the physiology of it all)  I am not ready to accept that this is how it has to be for her.  The surgeries, the hospitals, the years, the meds, the long hours, the monitors, the pumps, the research, the tests, the doctors, the appointments, the traveling… I can do that.  Those things are things I know.  Those things I am ready for.  Another doctor, another hospital, another diagnosis… I can handle that.  This… I cannot.

To be honest with you, there is nothing in the world that has ever SCARED me about this child and I have finally found the one thing.  I find myself aching and paralyzed with fear at this moment that we are one day closer to THAT DAY when she realizes that she is not like everyone else.Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• February 23, 2010 -- So it begins, Kyleigh’s next medical journey.
• October 26, 2009 -- Do not be anxious about anything…
• October 12, 2009 -- Preppy Pumpkins
• August 26, 2010 -- Be Still…
• January 12, 2010 -- Coming Home!

“Don’t hope for a miracle… make one”

I think this is how I live my life.  Some might find it “un=biblical”.  For me, its what I believe in more than anything in the world.  I believe that sometimes, instead of HANDING us the product (miracle), God hands us the TOOLS to make it happen.  Look at it this way.  Say God has hosted Thanksgiving dinner every single year and finally he says… I am going to buy the turkey, the stuffing, the cranberry sauce, the green beans and onion straws but YOU have to cook your own.  He still PROVIDED for us … did He not?  But what He provided were the TOOLS to make it happen.

I believe in divine intervention.  I believe that God has a purpose for EVERY person and that their lives will NOT end before their purpose is fulfilled.  For some, their purpose is to live a long life.  For some their purpose is to become someone great who changes the world.  Some will become famous to many and some to a very few.  For some, it is to become someone great as parents of extraordinary children.  For some, their purpose is FULFILLED in their death and for some in their life.  At any rate this life is simply a means to an end.  A GLORIOUS, amazing, happy ending.  I know that people cry at funerals but I truly hope that instead of even HAVING a funeral for me, that my kids will take all that money and go to the beach and sink their toes in the sand that I so very much love.  I hope that they will sit hand in hand on that Alabama coast line and watch the sun come up and feel the way I felt this summer as I watched my husband, father and son fish in the surf as the sun rose over the horizon.  I hope that my kids will donate any money I have left to a children’s hospital because I think there is something so cruel and wrong about a child’s death no matter their purpose.  Most of all, I hope that I die, old and gray, wrinkled and well loved by my family and by the years that have aged me so entirely.  I hope that I die long after I meet my grandchildren and THEIR grandchildren.  That is HOW I intend to die.  Happy, healthy and in a LONG time from now.

So… I have made peace… with life… with death… with God… and with my diagnoses.

I know, that my body is getting tired.  I know that my brain is overworked and is being literally “fried” by pressures being put on it.  I know now, after this trip, that my brain is deteriorating and it is doing so, quickly.  I know that I will likely need to make a decision soon.  I will never be ready to decide to have someone hack into my skull but I will go at this surgery with everything I have.  Just as I always did for Kyleigh, I will not go down without a fight (or under I guess is a better way to state it… get it?  Under anesthesia?   LOL Get it?  Okay… maybe I am the only one who thinks its funny… but I have to laugh or I would cry).  After this week I realized that its not okay to be in pain everyday and merely exist.  Its not okay to go for days on end without sleep.  Its not okay to NEED pain meds to be functional.  More than any of those things, there is HELP and there is HOPE.  I had heard from a few in the Chiari community that they were not fans of Dr. Benzel but for me, I think he is just right.  We had a good honest talk with him and he gave us a good level headed opinion.  His opinion was, he needed more answers.  We were 100% with him.  It totally blew me away that here in Kentucky the doctors basically told me, either take your meds and shut up or have the surgery and shut up.   I just think that there are always MANY ways to skin a cat.  You have to FIND the right one for you.  I firmly believe that I could care less what the person’s “ranking” is or which hospital they are at.  If they believe in me, are motivated to find help for me and are able in their skills to carry out their plan… that person is just perfect.

For me this past week was sobering.  I like to fight the good fight and “never let em see ya cry”.  I hurt more than I allow people to believe.  I am tired to the point of exhaustion most days.  Some days I wonder if this is all life has to offer.  Some days I know that I don’t want to live “this way”… not in pain and with no energy.  I feel like a shell of “me” most days.  Its sometimes an “out of body” experience.  I used to be the person who could see “the wall” coming and push on through.  Sleep, motivation, brute strength, endurance.  No matter how much I felt like I “couldn’t” go a step further I KNEW I always could… I had that ability to push myself beyond my own limits.  Now….. it pains me to admit it…. but I just can’t.  Not because I don’t want to or don’t TRY but mostly because my body has given up on me.  It has put in its two week notice and raised the white flag of surrender.  And that sucks.  To be trapped in a body that cannot keep up with your mind.  Heaven forbid to have a brain that cannot keep up with its own functions.  Sigh……………..

I realized, after this trip, that I am worse off than I allow myself to believe.  I get up every morning (although late sometimes).  I take my 6+ medications and I function.  I smile.  I laugh.  I am still a mom.  I am still a wife.  I am still a photographer, a sister, a daughter, a friend.  I am still in love.  I am still happy.  I am still strong willed and opinionated.  And now I am also in pain.  constantly.

It started with a level 1-2… just that annoying pain that you think “oh man I need some Tylenol before this turns into some BAD”.   So… I took some Tylenol.  Then the 1-2 turned into a 3-4.  So I took some more Tylenol to the tune of thousands of milligrams… watching the clock every 4 hours to take more.  Then I started forgetting things, and dropping things, and blacking out.  I stopped driving and working and sleeping.  The pain slowly creeped up to a 5-6 and I sought medical help.  I went looking for anyone who could tell me WHAT was wrong and how to fix it.  I continued to smile and rare a few person knew how badly I was hurting daily.  I started to slow down.  I couldn’t move at my normal pace or push through “the wall” anymore.  I couldn’t push myself at all.  My body had had enough.  It turned in its two week notice sometime in the Spring of 2009.

By summer, my pain approached 7-8.  Nights brought lots of tears, puking, phenergran, heating pads, TONS of neck rubs and utter confusion.  Some people would call it “hopeLESS” I call it “hopeLOST”.  Because hope LOST can be FOUND again.  That is the beauty of it.  Hope LESS means that the hope has been subtracted or taken away from the situation and THAT will never happen in my life.  But these THREE remain, faith, hope and love.

Summer also brought confirmation that my fears were not unfounded. A diagnosis.  It was not any easier than any one that had ever been laid in front of me for Kyleigh.  But somehow, the tears that came for her, did not surface for myself.  I can’t.  I am THE MOM, THE WIFE… I don’t cry.  Not for myself.  The thing is, that I knew too much.  In searching for answers for Kyleigh I had collected lots of information on this “headcase” of mine.  For Kyleigh, we were able to stop the progression and maybe even REVERSE some side effects.  One of the top Chiari / Tethered Cord surgeons in America gave the opinion (for Kyleigh) that her Chiari malformation (hers is 5mm = ACM1) maybe have been exacerbated by the fact that her spinal cord was SO tight, it was literally pulling her brain down from her skull.  He was MORE than sure that if we stripped her filum (de-tethered her cord) that she would not only see and improvement in her TC symptoms but in her Chiari ones also.  He was right.  Kyleigh shows little to NO progression in the realm of ANYTHING neurological.  I am thankful for that.

For me… my issue has gone undetected long enough that I have sustained damage.  It is not guaranteed that even AFTER my surgery that any of these issues will disappear or even get better.  Its a 50/50 shot for me.  BUT… 50/50 is better than zero.  Why is my Chiari significant?  That is a question that Dr. Benzel set out to answer.  Here is the answer:

My chiari is likely causing brain stem compression.  Chiari is a congenital malformation that can be totally benign throughout your life.  It becomes dangerous when it starts to compress the brain stem.  This can lead to many things or ultimately death.  This is why, for me, there is a bit of urgency in our fight.

At this point we are 98% sure that this “road” will lead me to become a zipperhead. (not sure what the other 2% is… not sure I want to know!  LOL)

So… what IS a zipperhead?  Its the term affectionately coined by the Chiari community for the people who have undergone and conquered their Posterior Fossa Decompression surgeries.  The scar is a large lengthy scar that runs down the back of your head from the mid cranium to the base of your neck between your shoulders.  It very much resembles a “zipper” on the back of your head.  Thus the term “zipperhead”.  It is a badge of honor really.  I will be proud to wear that scar and hopefully when Kyleigh is old enough to understand, she and I will be proud of our scars together.

I realize that this will not be easy.  For me.  For my family.  For my kids.  But most of all for my husband.  He is scared and I know it.  Though neither of us will say it I know…  I know because…. I am too.  This will also mean some major life changes.  Our finances are skirting the edges of danger as it is with me being self employed in a horrendous market and having piles of bills from Kyleigh already.  We are getting ready to make some big decisions that will make both our childcare and financial situations easier.  Emotionally it will be easy and hard at the same time but we are ready.  We know that when this surgery comes I will need help 24-7.  Troy still has to work and do all the things he does to keep our household running but with the added strain of me being disabled for a bit.  It brings tears to my eyes thinking of all the ways in which I will watch the life Troy and I have made go away, but it will morph into a brand new one.

I have dubbed the year 2009 the year of Making Peace and the year 2010 will be the year of New Beginnings.  I am very much looking forward to January

So… that’s where I stand.  I still didn’t get around to telling you about our crazy week in Cleveland did I?  Well there’s always tomorrow… tonight I just needed to get all of this off my chest.Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• November 17, 2009 -- Tomorrow is yesterday and now today is here.
• November 15, 2009 -- Tomorrow is coming…
• August 23, 2009 -- Week 5- summed up as weirdness, tingling, leg pain and other great neuro junk.
• November 4, 2009 -- Another Day… more goo…
• September 27, 2009 -- Do you think you could be depressed?

This has been home for us this week.  I have to say that the Cleveland Clinic foundation is breathtakingly beautiful.  When you pull up to the front drive it nearly takes your breath away.  I always thought that Cincinnati Children’s was a magical place… I had not KNOWN what it is to be in awe until I pulled up to Cleveland Clinic, parked, went through the UNDERGROUND TUNNEL system, up the escalators and into the space aged, beautiful glass and open concept building M (Main).  Troy and I wondered through as if we had just been dropped onto a different planet.  I really have NEVER seen anything so architecturally beautiful.  I am a huge fan of the historic architecture but this is what I would expect our civilization to look like long after I am gone.  (yes… I was smitten!)

It has been a very BLESSED and assuring time.  I know, more than ANYTHING that my Heavenly Father has been with Troy and I this week as we embarked on this journey.  While the results of our days at the Cleveland Clinic are sobering, and my heart is a bit heavy, I am NOT shaken or scared.  I forget who it was who used to say “If He leads you TO it, He’ll lead you THROUGH it” but it’s so true.  When we headed out on Monday for my appointment at the Spine Center at the Cleveland Clinic, I felt impressed (read: led by the Holy Spirit) that I needed to pack Troy and myself for 3 days.  Not so amazingly, that is EXACTLY how long our stay was extended.  Although the week was quite tiring and hectic I know that every single piece of this puzzle is falling being placed together perfectly.

I will go into the whole exhausting week’s events (and let me tell ya… there are some DOOSIES…) tomorrow because tonight I am just glad to be home, with my kids (man I missed them …) and my hubby getting ready to sit down to Grey’s Anatomy and some other TIVO’ed shows.  (I mean REALLY Cleveland… is the Brown’s game THAT important that you should interrupt HOUSE???… I think not!)  Thank you THANK YOU to everyone who is praying and keeping us encouraged!  It means the world to us!

Keep the prayers coming because this week is just the beginning of my journey into becoming a “Zipperhead”Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• November 15, 2009 -- Tomorrow is coming…
• November 22, 2009 -- Making Peace…
• November 17, 2009 -- Tomorrow is yesterday and now today is here.
• November 4, 2009 -- Another Day… more goo…
• October 14, 2009 -- Days like today is when its all too real.

On the MEDICAL side of things:

So yesterday I met with Dr. Edward Benzel.  I was very impressed with his expertise and general take on things.  He said that he wonders if the Chiari is truly significant or if it is just there.  It has the ability to be there and never affect my actual physiology.  The only way to really TELL is to do what is called a CINE MRI.  It is a specialized MRI which tracks the FLOW of CSF fluid around the cerebellum, into the spinal column and into the skull.

He said that he was also concerned that I was on Lamictal for seizures when a CAUSE of the seizures had never been determined.  He wants to further study that also. Several things were thrown out on the table that could be possible problems, none of which I really want to think about at the moment…. (bleeds or lesions or blah blah blah)… we are just going to let God have that one and HONESTLY I can tell you… I am NOT scared.  Kay Sara Sara… whatever will be will be.  The beauty of the grace is that God has promised it to us in the sun AND in the rain.

Add to that the fact that he thinks that my brain is a quandary (LOL imagine that!).  Dr. Benzel said he honestly believes that I may have a compound problem.  Instead of pinpointing and saying “THIS” is what’s wrong… we may have to say “ALL OF THESE” are wrong.  He thinks that I have headaches from multiple different things and when they all combine that is the day that I end up debilitated.

So we are here for at least another two days.  He ordered multiples tests, studies, MRI, scans, consults etc.  The one I am MOST excited about is a HEADACHE Neurologist!  He actually SPECIALIZES in headaches!!!  Can you believe it?  I am stoked!  I just hope this guy has better ideas than Percocet and Darvocet. … LOL.

On the EMOTIONAL side of things:

All in all I am VERY glad we came to Cleveland.  It is promising and that is all I need at this point.  I need hope that someone is actually going to TRY and find out what is happening and attempt to fix it, not just tell me “here is some meds have a nice life”.  Or worse yet, stop complaining if you don’t want surgery we don’t want to hear it!  I am GLAD that of all the people, a SURGEON is the one who said… we are NOT operating until we absolutely know its necessary! I am ALL for that because believe you me I am NOT interested in having my skull chopped open (at all really) unless it is absolutely necessary!  I feel like if we can find other ways to control the issues then THAT is the best possible thing!  If I NEED surgery then obviously I will put that one in God’s hands and do what is best but for now I am happy to just keep pushing through more testing to get to the “big picture” that is my brain.

I “knew that I knew” that we were MEANT to come to this appointment.  Everything worked out perfectly and I just FELT it in my heart.  Every appointment I have been to up until now has left me “wanting” something else… feeling like we were yet to find what we needed.  NOW… I have peace in knowing that someone else feels the same. I am 100% confident that Dr. Benzel wants what is BEST for me and not necessarily what is “easiest” for him.  That is the BEST than any patient can hope for.

So Cleveland is home for the next few days.  If you are praying my, specific requests for today are:

- Pray that the radiologists, medical staff, doctors, fellows etc will be BLESSED, that their paths would be made straight and that their day would be stress LESS so that their minds will be clear and their purpose in my life would be abundantly and DIVINE apparent.  As always I like to pray that their family, their friends, their work, their finances are blessed because I really feel that these people give SO much to those around them that they deserve a little extra blessing!

- Pray that God would put his hand on my body and ALLOW these people whom He has placed in my life to be able to SEE clearly what they NEED to see so that they would be able to recommend the best course of action.

- Pray for CLEAR and UNDENIABLE answers about the “problems” and SOLUTIONS for making my head “better”.

- Pray that WHATEVER this is that is causing problems would CLEARLY manifest itself and be FOUND so that it is able to be treated.  I pray that anything that is hindering this and allowing it to HIDE would be removed.

- Pray that God would continue to give Troy and I peace and hope.

- Pray that God would be with our kiddos as they are at home with my parents and without us.

- Pray for continued safe travels as we will journey into Cleveland several more times in the next few days   (we are actually staying in Oakwood Village just outside of Cleveland)

So… that is it… the update of yesterday and today.  I will write more once I have been through today’s battery of tests.  I just have to say thank you to all my bloggy friends who provide me with so much support and love.  Your emails, calls, messages, texts, mean SO much to us and really help us to smile through ANY circumstance!  I am SO glad that I have this blog to be able to come and write my feelings, fears, shortcomings, joy and praises!  Have a GREAT day today and I will write again soon!Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• November 22, 2009 -- Making Peace…
• November 15, 2009 -- Tomorrow is coming…
• November 19, 2009 -- One long week……….
• November 4, 2009 -- Another Day… more goo…
• October 14, 2009 -- Days like today is when its all too real.

Tomorrow we will meet Dr. Edward Benzel at the Cleveland Clinic.  I truly wish that we could get to the Chiari Institute in New York but at this point it is out of our reach.  We are hoping that our insurance will pay for some of the costs if I were to have surgery in Cleveland because they do accept Anthem.  Whether Dr. Benzel is out of network or not I don’t know.  Its a better shot than TCI because I KNOW that they don’t take our insurance!  I cannot see any way that we would be able to pay for a $300,000 surgery out of pocket. But I digress.  This is not about what can’t or won’t happen its about what IS and WILL and CAN happen.

Tomorrow I hope to not only find a neurosurgeon but I hope to find a PLAN.  A plan that brings some HOPE and peace and relief (literally pain relief!).  I have been “not” thinking about this for the past week and honestly I was up in the air as to whether we needed to go or not but I really just feel like I am supposed to be there.  Whether it is to reassure me that I should stay here in KY with Bob or whether it is to find an expert in Dr. Benzel… I don’t know.  I just KNOW that I am supposed to go.  So I go.

Tomorrow please pray for traveling mercies for Troy and I.  Its almost a 7 hour drive one way and we will be booking it to get there by my 3 pm appt.  Pray that God would divinely intervene in this “case”.  That He would impart wisdom, expertise and compassion.  That God would clear the way for Dr. Benzel to have a stress free day.  I pray that God would make my case “interesting” and that Dr. Benzel would find particular interest in treating me.  That He would abundantly BLESS Dr. Benzel and his family, his patients, his staff and friends.  That God would place His hand of protection on me and that HIS will to “give me HOPE and a FUTURE” would be fulfilled.  I know I cannot pray for Dr. Benzel to be “it” but I can pray that he would be an instrumental part of this puzzle that is my brain.  That he would be able to provide us with insight and MOST of all a TREATMENT plan.  I need a plan.  It’s kind of my thing….  Mostly I just need to FEEL better.  I need to BE HERE for my kids for the next 60+ years and I NEED someone to care for me as a person and as a patient.

Tomorrow will be here before I know it.  There is a lot to do, bags to pack, documentation to create, meds to take… so I am off to do all the good stuff I do at night and I will rest peacefully tonight knowing that WHATEVER the outcome of tomorrow… I AM being HELD by the ONE who will never leave or forsake me.

Tomorrow please join me in prayer.Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• November 22, 2009 -- Making Peace…
• November 17, 2009 -- Tomorrow is yesterday and now today is here.
• November 19, 2009 -- One long week……….
• August 23, 2009 -- Week 5- summed up as weirdness, tingling, leg pain and other great neuro junk.
• November 4, 2009 -- Another Day… more goo…

• my jaws do not connect correctly and they pop every time I fully open my mouth
• my teeth / bite is off (not like overbite or underbite) where my teeth start and end…. mine done match
• my palette is mis-formed (we knew that from the days of braces and the palette expander)
• my ears are not normal… and likely the anatomy in the inner ear is not either which is why I have so much goo that comes out of them (yes… TMI but hey… its what I do… I thought I was leaking CSF for a while!)  They are also not set correctly on my skull
• my toes.  HAH!  It has always been a big joke in my family that I had a “hammer toe” but in actuality Dr. Berger said he had never seen anything like my toes… it certainly is NOT hammer toe but it IS something.
• my butt … well really my sacral dimple.  Yes I have one of those like Ky… didn’t realize it until just lately!

That combined with Chiari (which is a CONGENITAL anomaly… meaning I was born with it) add up to something.  This is likely some underlying syndrome that has gone un-diagnosed for many years.  Dr. Berger thinks it could possibly be some autosomally recessive thing but who knows.  After his thorough exam he said we definitely need more testing and evaluation.  He looked at my MRI and came back almost laughing.  He said it was “VERY interesting”.  He seemed anxious to keep the DVD to show to his colleagues… knowing what I know about Kyleigh’s experience…. this is actually a GOOD thing.

So, they sent me straight for another EEG today.  I will be off to the specialists, one is a Neurologist who specializes in Epilepsy and another who is a Neurosurgeon.  Now, here’s the kicker… the Neurosurgeon that Dr. Berger wants me to see because he thinks he is best suited for taking care of my particular issues… is Dr. Robert Owen!!  (anyone remember him?  Think back to 3/18/08…)  He happens to be the same neurosurgeon who did Kyleigh’s Tethered Cord surgery.  How funny is that?  I know that NOTHING is ever a coincidence in my life.  I remember when I came back from Chicago and Joe recommended Bob we immediately felt comfortable with him.  Hopefully, knowing Kyleigh’s history, it will give him insight into my case.

Here is where the story gets even more interesting.  The Neurologist who specializes in Epilepsy Dr. Meriem Bensalem.  What I found out during my EEG is that she is really Dr. Meriem Bensalem-Owen… Bob’s wife.  Small world eh?

So we are on our way.  Tonight I am sporting my best “post EEG goopy” hairdo.  I will be waiting on the results of that as well as proceeding with appointments for the two specialists.  I don’t know if we really know anymore than we did before we went into today but at least we have people “interested” and that is a good thing!Recent Comments:

• Dianne says Thanks for sharing your family with us, your kids are so cute! [more]
• Amber says Nicole… I emailed you! Sorry it took me so long! [more]
• Amber says Nope.. I am not gone… just busy! Had a crazy, amazing, awesome and BLESSED summer and fall [more]
• Melissa Gooch says I hope you and your family are well. I was just wondering if you have you given up this [more]
• Nicole Walters says Hello
  I was recently diagnosed with chiari, and now my children are also showing symptoms. I came across your blog online, [more]

• November 22, 2009 -- Making Peace…
• November 17, 2009 -- Tomorrow is yesterday and now today is here.
• November 15, 2009 -- Tomorrow is coming…
• October 14, 2009 -- Days like today is when its all too real.
• September 27, 2009 -- Do you think you could be depressed?