She got an ipod touch (mostly because we wanted her to be able to take it with her to the hospital in the winter, but she decided it needing “WASHING” a few days later and ruined it.  I managed to get a new one – thank goodness I bought that warranty but we ended up re-gifting it to Ross this Christmas… shhhh… don’t tell her… she never even noticed.. obviously she is not hurting for STUFF!)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 -- 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
• March 13, 2011 -- “aren’t you just beside yourself happy?”

Summer was amazing… the kids grew up so much, swam like crazy… ALL the time… Owen and Ross each learned to ride their bikes.  Owen went to LEGO camp, Kyleigh went to dance camp, Mom and Dad went to TWO destination weddings, one in Negril, one on Anna Maria Island.  We traveled, and ate out more than was appropriate and my back side is still paying the consequences!  It’s the age old quandary… either you have money, and no time to spend it, or not enough money and more time than you need!  LOL  I cannot complain though… I prayed that God would bless us and our business and allow us to be a blessing and He did and hopefully it WAS!

We learned that Ross’ Kindergarten teacher (our favorite teacher EVER) was leaving the school… so we hosted a goodbye / pool party for her!

We welcomed a new family member… no.. NOT a baby… there will be no more of those unless they don’t speak English and were left on a doorstep.  This is Buddy the Pugglebull.  So ugly he’s cute right?

Kyleigh turned 5 years old in July!!! (WOW!  I cannot begin to believe its been 5 years!)  She is such a big girl now!:

Fall came without warning and took us by storm!  Another busy season for our business came with a TWO weddings in our family and our kids acting as part of the bridal party for one!  :)  Proud mama again there!  There was lots of fun to be had as the boys went back to school:

We chose NOT to send Kyleigh to school knowing that she was scheduled for a life altering surgery in January.  There was no sense to put her in school and then turn around and yank her back out. So she is spending one more year hanging out here at home with mom!

Kyleigh was invited to be the Grand Marshall of the Run to Remember – 9/11 Run to benefit the Kentucky Children’s Hospital:

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!
• January 6, 2010 -- First SNOW!
• November 8, 2009 -- Christmas Card Preview!
• October 31, 2009 -- Carving and Couponing…
• August 28, 2009 -- Another few faves from Gulf Shores…

Yes… so she can’t ride horses or go cliff diving but the girl CAN DANCE!!!!!!  Her hypermobility in her lower limbs actually make her PERFECTLY built to be a dancer   Mommy is of course, extra happy about that!  I mean really if you are going to have a bunch of junk wrong with your body, the one time it is advantageous you have to be happy about it!  Back in May she performed her first dance recital on the stage of the Lexington Opera House.  She was amazing!  I cried… of course.  We wondered if we would ever get to see days like that and every single one that we GET … makes us appreciate every single second!

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.
• 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
• March 13, 2011 -- “aren’t you just beside yourself happy?”

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?”

Kyleigh’s room (Owen’s old room) is going to go from looking like this:

(excuse the mess!)

To looking like this:

pink-black-elegant-frech-paris-chandelier-room

There are so many things in this that I adore Icannot even get started… the lamps, the pillows with feathers, the curtain, the monogrammed cornice and the chandelier… perfect!  I plan to bring many elements together in Ky’s room though…

Here are a bunch of my ideas… I have already purchased several things but I will have to see how they are all going to come together… won’t know until I get them in her room!

From the top left… wall paper in the closet!  I am seriously considering removing Kyleigh closet doors and putting curtains up.  If I do I will DEFINITELY put the wall paper in there somehow! 

Polka dot lampshade… I am covering a shade for a lamp she already owns!

Spray painted and embellished chandelier!!  I bought a $1 Chandelier at Habitat for Humanity Restore… I have already sprayed it a berry pink but I am thinking now that the berry is too pungent for the effect I want to achieve.  I am thinking of a ballet pink now…I will keep you posted!  In the second collage you can see the already sprayed pink chandelier and pink mirror frame.

I like the stripes on the walls but it is too much for Ky’s small room.  We are going with a more pastel pink BUT I do love the idea of the vinyl sticker on the wall over the bed!  I ended up buying a CHANDELIER vinyl and an Eiffel tower… don’t know which one will make the cut!  The other will find a home back at Hobby Lobby!  LOL

Of course the monogrammed cornice…. we are DOING one of those one way or another!  Debating on whether I want it over her window or over the closet… that probably also depends on what I do with her closet doors… so many decisions!

Kyleigh is also getting a netting tent thing over her bed that looks a lot like the pottery barn one.  That was her “must have” for the room.

The black sconces are going somewhere… who knows where!

Kyleigh is keeping her black furniture.  I was thinking of getting her baby bed out of storage and making it into a REAL bed but it makes a full and then she would not be able to fit anything else in the room!  So.. she is going to have a black twin bed with bedding that looks like the top right hand pic.  She also has another pillow like that Paris one that is bejeweled and says “Dream”  Perfectly appropriate if you ask me!

I love that big gawdy pink mirror… the mirror in the bottom right may become that but I think the color is going to definitely have to change.  Trying to wait and see what color ends up on the walls.

The pink paris knobs are going on her black dresser… those are Handpainted from Glamorous Kids Decor on Etsy   She has several designs and even a light switch cover that I am smitten with!

So I have been collecting and waiting to clear out her room, paint, lay floors and get started!  Spring break here we come!

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 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

I was shocked and amazed.  Now that I know she can do it I will take the better video camera with me.  This one was just my cell phone.  But here is another one… isn’t she fabulous?

This is Kyleigh and her dance instructor on the first day of class.  Of course it is a little reminiscent for me because Kyleigh is dancing with the program that I used to work with when I was at Parks and Recreation.  I have known Mindy for MANY years so it is very comfortable to have Ky in her class.  She really is a fabulous teacher and I would trust my girl to no one else!  Kyleigh also marks the second generation of girls in our family to dance with Mindy as my younger sister danced for Mindy for close to 13 years.  So… all around its kind of cool!!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 I walk into the bathroom this afternoon to find my child filling up a diaper disposal bag (read: newspaper bags that we use for diapers because they are perfect and someone gave me a WHOLE BUNCH of them!) with WATER.  I started to freak out and Troy said “No…………… ask her what she is doing.”  She never stopped filling the bag and just said “I am filling it up because I want to carry my mermaid around and MERMAIDS NEED WATER!”  I mean… geez mom.  What planet are you on?  Don’t you know anything!?

Thanks Barbie and the Mermaid tale…. now I have a child carrying around a bag full of water and a mermaid all over my house!

I couldn’t do anything but laugh really.

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

All of the kid’s clothing from baby to 3 years old are GONE.  Done… It would have been a little more emotional if I had not been still buried in boxes up to my eyes!  I want the space more than I wanted the “stuff”!  So I did it!  By Sunday I was selling clothing 5/$1 and people had come from other cities (via Craigslist ad) to buy the clothing and I must have heard 15 stories of people buying for children who had nothing!  Made my heart warm to know that Kyleigh closet has dressed many children whose parents and grandparents could not afford it otherwise!

At any rate… the night before the sale I only had 2 hours to sleep between setting up and starting the sale and I could not sleep so I watched… one of my favorite shows which Troy likes but could take or leave… Say Yes to the Dress!  The last episode had a bride that was fighting stage 3 breast cancer and I cried all the way through.  The Kleinfeld rep worked hard and got her a 10,000 dress fro $1999 and I thought to myself… wow.  THAT is where I want Kyleigh to go for her dress.  Even knowing local shop owners here… I still want her to have THAT experience!  I also thought… omg… how much will HER dress cost by the time she is old enough?!  HAH!  I had better start saving NOW!

Which gave me an idea.  Kyleigh has so many beautiful dresses.  She loves them!  Always has.  As I was selling off her clothes I kept a tally in my head and by the end of the day, her DRESS sales alone were close to $50.  So today began Kyleigh’s Wedding Dress fund!  I am headed to the bank to start her savings account that will be ear marked for her wedding dress.   I have also decided.. that I will keep the money from ANY dress that I sell of hers and put it into this account.  Hopefully in 20 years from now there will be enough in there to buy her the dress (maybe even WEDDING) of her dreams!

I guess maybe because I see a wedding a week it reinforces to me that I want her to have everything she ever wants.  I don’t want her to have to compromise on one single thing!  My wedding day was amazing but it was on a budget.  There were so many things I would have done differently but you cannot change that day once it is over.  Every parent wants to give their child the world but I am determined to make at least, the wedding day, be anything and everything she wants it to be!  I only hope, that when Kyleigh gets married, she will be able to begin to understand what that day will mean to her mommy.  Too many days of her life, I have been forced to think about what if she never gets to pick out a wedding dress!   These are things that no parent should ever have to focus on and I will not think about them unless I have to.  I want to look at her, everyday for the rest of her life, and wonder what she will look like on her wedding day, instead of thinking of what she DID look like all those hospital days.

Even though she may have looked like this on the day that I started saving for her wedding….

Some day she will be wearing this:

And it won’t be hard to spot me.  I will be the one, in the front row, who is crying so hard she cannot see straight.  I will have earned those tears of joy with so many tears of sorrow and I will spend every day, from now until then, making sure that I do everything in my power to make each day, for the rest of her life, a dream come true!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