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:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [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:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [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…
• August 26, 2010 -- Be Still…
• January 6, 2010 -- First SNOW!

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:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [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:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [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:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [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:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [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:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [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:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [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?

I have been pondering what it is that God wants me to learn from these “trials” He has allowed in our lives.  I have realized that many times when you pray for something, instead of being handed, on a silver platter, the thing that you prayed for, you sometimes receive the “opportunity” to learn.  Often that can come in the form of some hardship or other trying incident in your life.

As my mother used to tell me “If you don’t learn your lesson the first time, you get to repeat it”.  I feel like I am repeating so many events in my life which means that I am not listening and learning.  I have made my fair share of mistakes and will continue to I am sure.  It is the human nature and condition to be imperfect but I will, through my Heavenly Father, one day be with Him in heaven regardless.

I am a very anxious person by nature.  I have issues with needing to keep things in order and under control.  I like to strive for “perfection” and often feel that I have failed when I do not live up to my own standards.  I know that God is trying to break that habit of mine but man is it rough when God tries to “get a hold of you”.

In the past 2 weeks we have had some “bad” which have each turned out for the “good”:

Owen brought home the “Influenza A”, which promptly infected Kyleigh.

Then the both of them turned up with a rash that looked eerily similar to the chicken pox but they have both had the vaccine and never itched for a minute.  (Megan said it didn’t look like chicken pox to her but it could very well have been as the chicken pox virus is morphing now that the shot exists).

I had to “have words” with Owen’s school about their lack of sanitizing and poor cleaning habits.

We had to haul all over town and take 2+ hours to even find and receive the compounded Tamiflu for Ky.  (lucky for us Owen learned to take a pill this month!)

Ross seemed “okay” until Friday night at 7 pm when he started screaming that his ears were hurting.  (Why is it that my children have the inability to get “sick” Monday through Friday 9-5?)

Then Saturday Kyleigh comes up with snotty nose, nasty green stuff, and goop coming from her eyes.

By Sunday Kyleigh’s temp was at 102.5 (101 with tylenol) and Ross was at 101 period.

Then Ross pukes all over our bedroom floor.  (Owen has luckily learned that he needs to head to the toilet or tub and FAST when the feeling hits!)

Today we go to Megan’s office (which is a complete madhouse… I felt like I was walking into the plague) and she says that both of the babies are bad off.  Double ear infections, upper respiratory and Kyleigh sounds really “wet and junky” inside.  Great….

Off to the pharmacy.  It was totally my fault because Megan asked me where to call in the scripts and with Ross there I neglected to have her call Ky’s into the clinic and ended up with it at Kroger.  Of COURSE they cannot compound it… that would be too easy.  So it was 4 frantic phone calls between Kroger, Megan’s office and Clinic Pharmacy to get it straightened out just 10 minutes before the pharmacy closed…

Now both babies are in our bed knocked out on sudafed, abx and tylenol.  Owen has been “off-sited” as I affectionately call it and was quarantined on the joint decision by Megan and us.  He will not return to school this week until both of his siblings are well.  We are just bouncing these illnesses back and forth and the hit to the immune systems came from the flu that he contracted at school.

BUT… where I was going with this IS… I am starting to SEE God’s everyday miracles.  I am trying to be STILL and watch how He is working and blessing us each day.

Because Owen got the flu early enough, the Tamiflu was actually available and we managed to even FIND a pharmacy to compound it for Ky.  That SAME pharmacy was also able to override some issue with her Medicaid and Insurance to MAKE them pay for the nearly $40 script.

The rashes, even if they were chicken pox… only appeared on the kids’ trunks and did not itch at all.  If it WAS chicken pox they got off REALLY easy!

I was NOT met with opposition as Owen’s school and was very impressed and relieved when both the counselor and assistant principal met with me, heard my concerns AND took a course of action to help alleviate my issues!  It was GREAT.  I love Owen’s school!

We managed to make it all the way through wedding season and never got ill!  The kids managed to always be “okay” until Sunday making it less stressful on us to be away.

Ross’ puking was NOT the flu.  He never GOT the flu.  The puke came from too much snot, too little appetite and too much pain in the ears.

BECAUSE we were at Megan’s office TODAY we were able to ALL get the H1N1 shot (Owen will go back this week for his) as it JUST arrived to their office today.  Now THERE is God’s perfect timing for you!

BECAUSE the Kroger pharmacy could not compound one of her meds I ended up having them sent to KY Clinic which SAVED me the co-payments.

BECAUSE we had to WAIT a long time at the pharmacy I was able to go through the Kroger store and find some amazing deals that I had been WAITING for and hoarding my coupons until the Mega Sale came around!!  (coupons have been such a HUGE blessing… I get all choked up about how God placed Ali back in my life to teach me this method… without her and God’s hand in our meeting back up we would be struggling even more than we are now!  At least I know we can put food on the table no matter what!)

BECAUSE we were in Megan’s office I had the opportunity to talk to her about Owen’s school situation and she agreed and was glad to write a note explaining why he is absent.  So now his absences are justified and we don’t have to worry.

Also we had a lot of peace and quiet today with the kids being sick so I was able to spend Troy’s sick day with him and getting my coupon run ready!!

Overall its been a GREAT day.  Amazing that its all in how you look at things.  Today my cup is not “half full” it “runneth over”……..

PS… our church has been so amazing in bringing meals and preparing some quick foods like fruit trays and soup to freeze… our bellies have been full and our hearts warm knowing that they are there and praying… thank you everyone!!  We love our church family SO much!

Recent Comments:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

• August 26, 2010 -- Be Still…
• February 23, 2010 -- So it begins, Kyleigh’s next medical journey.
• January 12, 2010 -- Coming Home!
• December 15, 2009 -- One Day closer…
• November 22, 2009 -- Making Peace…

Last year I did THESE:

directions at Good Houskeeping.com

This year I am wanting polka dots… I am still on the polka dot kick and I love PAINT.  If I am going to put the effort into a pumpkin I am thinking a FOAM pumpkin is the way to go that way I can use it AGAIN next year!  I did a door arrangement last year and I still love it.  Thus its on my door again this year!  It was so easy to just get that sucker out of a box and hang it that I think I could get used to this!

I LOVE these:

Jennifer over at Half Full Martini Makes these!!!  I mean really could they be any cuter?

This is more elegant:

This arrangement comes from Holly at Holly Mathis Interiors

I am smitten with the white pumpkins and black dots!

OR how about these pumpkin house numbers??  O… my… word… I wish I had a big huge house with columns (not really… I am perfectly happy with our house… we have made it our own now!)… imagine these stacked on a big southern wrap-around porch? Or my mom’s maybe?! (hey mom!!!!!!!!………..)

From Sunset

But THESE I love the most!  They are of COURSE Martha Stewart! I have decided that I am a closet Martha Stewart.  I am too busy to be as organized as put together as her but I aspire!  LOL I still have to thank Ali, my domestic diva friend! She awakened the sleeping giant in me last year with her Cookie Exchange!

I couldn’t find these on her website any more.  I actually found the pic on Mrs. Delightful’s blog.

I just LOVE the way they glow and are so warm.  Makes me smile There is something so elegant yet homey. Its just PERFECT!

I have also been saving Ky’s formula cans to make these:

Idea from Woman’s Day.com

I usually like “fall” decor that way I can leave it up until my Christmas stuff goes up.  I think these are “fallish” enough without being “Halloween” to keep out until Thanksgiving.  I am so excited!  Now if only Owen’s trip to the pumpkin patch would hurry!  Actually we will be buying $3 Pumpkins at Meijer or somewhere because I am SURE they will be outrageous at the Pumpkin patch but I cannot wait to get some pics.  I need to take the kids pics for fall / Christmas cards *yes I am already planning* / Christmas gifts.  Hopefully they will cooperate.

As a PS… and a Kyleigh update: we will see her urologist SOON.  She has had an infection brewing and we have manage to scathe it off for a few weeks now but alas we failed this weekend and the infection took over.  Now we get to do the whole culture, blood, etc.  Considering the kid is getting DAILY antibiotics straight into her bladder I have NO idea how she gets infections!  I am worried that she is building a resistance to the abx.  I will try not to worry until we talk to Alam.

PPS.. Dr. Alam informed us last time we were there that we were one of his FAVORITE patients!  HAH!  Nice.  Considering the fact that Shumyle and I have nearly gone to blows (not really just some heated debates!) my mouth nearly dropped on the floor.  I am sure he is just fond of my kid (not me!) ROFL.  Its always nice to know that someone is taking extra special care of your child.  Makes me all warm and fuzzy inside.  (Until I have to unleash the mama bear on him again… maybe I won’t have to…)  I think its really just because he is convinced that I KNOW everyone.  There are so many patients of his that run in our same circle its funny.  He always seems astonished that so many of his patients “talk”… hah… you have NO idea buddy!Recent Comments:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

• December 15, 2009 -- One Day closer…
• August 26, 2010 -- Be Still…
• February 23, 2010 -- So it begins, Kyleigh’s next medical journey.
• January 12, 2010 -- Coming Home!
• October 26, 2009 -- Do not be anxious about anything…