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 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:

• 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…
• June 29, 2010 -- Call me crazy… but we had a yard sale!
• May 7, 2010 -- David had Goliath… Kyleigh had THE POTTY!
• February 23, 2010 -- So it begins, Kyleigh’s next medical journey.
• January 14, 2010 -- Ky’s new do…

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:

• 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…
• June 30, 2010 -- Because Mermaids need water…
• May 7, 2010 -- David had Goliath… Kyleigh had THE POTTY!
• February 23, 2010 -- So it begins, Kyleigh’s next medical journey.
• January 14, 2010 -- Ky’s new do…

Tonight, my daughter crossed her legs, got the urge, ran to the potty, crawled up on it (a la sitting bull style – she of course learned from Ross) and PEED straight in that potty.  She then took off two squares of TP, wiped, flushed and walked away… all while I stood in shock… with tears.  Seriously?  Where did THAT come from?  This is the SAME child who dribbled urine down the hallway at the Hopemont house not more than 2 months ago?  The same child who we were considering a permanent catheter and completely cutting off any ability to leak urine from below this fall?  The same child with bad kidneys and an even worse bladder?

Yes… that very one!  At 8:02 pm on May 7, 2010, my daughter PEED in the potty all on her own!

David had Goliath.  Kyleigh had the Potty… both were conquered.  I can ASSURE you that this “Goliath” is no smaller than the man that stood before David.  With a small stone he slayed the giant.  With a small square of TP my daughter slayed hers!  GOD IS GOOD!~!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!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…
• June 30, 2010 -- Because Mermaids need water…
• June 29, 2010 -- Call me crazy… but we had a yard sale!
• February 23, 2010 -- So it begins, Kyleigh’s next medical journey.
• January 14, 2010 -- Ky’s new do…

I posted this on my facebook and for the sake of saving my aching fingers I am copying and pasting most of it.  If you read it there… feel free to skip it here!

Yesterday was another “fun” day in Cincinnati. We had a day full of VCUG, Renal Scan, labs and appt with Dr. Alam. Here are the results of the testing and decisions made:

1) The reflux in her left kidney is persistent and NOT being positively affected by our extreme measures in cathing, meds etc. She WILL, without a doubt, need a ureter re-implantation within the next year or so.

2) Her bladder looks MUCH better than it used to meaning that the Gent. bladder irrigations are doing good work on it. Downside is that her bladder still holds nearly TWICE what a 4 year old’s bladder SHOULD hold. As a matter of fact, she nearly has the capacity of an adult. This is a double edged sword because it gives her the tendency to hang on to urine much longer than necessary and increases her risks for infection. BUT because it IS so big she also will likely NOT need a bladder AUGMENTATION unless other factors happen after her other urology surgeries. That is a huge THANK GOD, AMEN, HALLELUJAH!!!! Because augmentations are NOT nice surgeries.

3) Even WITH her big old bladder she still CONSTANTLY leaks urine meaning that her bladder neck needs tightening (surgery required for this also) and after that is completed she will LOSE the ability to void on her own … ever.

4) Which will require ANOTHER surgery – Mitrofanoff (tract made through the belly button for her to be able to cath from there instead of below).

5) Good news is that Alam can do all of these things in ONE SURGERY! We also have decided that it is HIGHLY likely that Kyleigh will get a MALONE while she is in the OR. Trying to put a malone in AFTER the grand scale of the urological surgeries is NOT a good idea so we will get the malone. Kyleigh is also proving to us that her bowels, intestines, GI system is going to stump everyone. Theoretically she should be able to eat, but she can’t, won’t doesn’t… She stays constipated and battling that is tiring and dangerous for her because she literally backs all the way up… If for some reason we don’t use the Malone (another surgical procedure that creates a pathway to allow for enemas without using the rectum) it can be removed relatively easily. It is likely that Dr. Levitt will end up installing this during the round of urology surgeries.

So… her surgery will be long and the recovery is TOUGH. Alam has told us to plan to LIVE IN CINCY for up to 4-6 weeks depending on Kyleigh’s healing. Kyleigh will be inpatient for a while and on TPN after surgery until the Malone and Mitrofanoff can be used.  This will still be problematic because Kyleigh will eat… especially when you tell her no!  She just doesn’t consume enough calories to sustain life.  This will not be easy for our family but we know that our upcoming move will make it a lot easier. We also are ALL in agreeance that Kyleigh will need this done within the next year or year and a half. We advocate having it done, and healed BEFORE she goes to school just because that will be BEST for her…. to have her new routine, know it well and NOT have to be pulled out of school for more surgery.

We are FINE even HAPPY about this because we have come to terms with the fact that Kyleigh will NEVER be naturally continent. We know this… we held out hope as long as we could and we now know that her body is going to do whatever it wants and what it wants is NOT to be continent… LOL. We want to do what is BEST for Kyleigh to grow up and have as normal a life as possible. We know that she will cath for the rest of her life, and we know that without these surgeries she will not be “dry”. We don’t want her to go through the emotional strain of that when we know that this is inevitable anyhow. So… we will see Alam again at the end of August / beginning of September, after wedding season calms down a bit, and we will schedule this surgery for October / November.

This will NOT be easy. It will likely be HARDER than the month we spent in the CICU because Kyleigh is OLDER and WISER and understands more now than then. Kyleigh will not be allowed to have anything by mouth for a long period of time and although we say she doesn’t eat… she is NOT orally averted. She LIKES to eat she just cannot consume enough calories each day to keep herself alive and healthy so we will be depriving her of food and we ALL know how fun that will be. It will not be like CICU when she was unconscious for weeks and all we had to do was watch the monitors and pray…

It is also likely that Troy will NOT be able to be in Cincy with me the entire time so I am trying to get myself “psyched” up to handle this on my own! Kyleigh can be a handful and very much reverts to being a “baby” when she is hospitalized.
I know the first question I will get from everyone is “What can we do?” -

Well we will be making a calendar of fun things to do and people to who will volunteer to make some time fun for the boys here at home.  We also are busy trying to collect a large number of DVD’s to keep Kyleigh entertained.  If you have ones that you would be willing to put on loan to us for a month (I promise I will Lysol the cases before I bring them back!) or you have extras of the girly movies like the Barbie series or Disney Classics (or Princesses especially) that you would be willing to sell cheaply… please let me know!  I am also looking for ANGELINA BALLERINA and Spongebob.  We were only in KCH for a FEW days in January and 4 DVD’s were just not enough!!!  I am looking at a few lots on Ebay but some of those are getting HIGH on the bids!  I have to wait for them to be CHEAP!  LOL

Another way to help is to help me think of activities and items for Kyleigh to play with while in the hospital.  After she is released we will be able to do things like the zoo and acquarium etc… but while she is inpatient we will have to have lots of fun things.  From previous hospital experiences I know that Ky loves:

STICKERS – these are doctor’s office and hospital reserved treats because at HOME they end up on the furniture and then I have to threaten people’s lives… it just doesn’t work out … LOL

PLAY DOH- At home this stuff gets left out on day 1 and then its all crusty after that.

COLORING BOOKS and MARKERS- Ky is not allowed to use markers at home without direct supervision… you can use your imagination to figure out why.  So when she GETS to use them in the hospital she thinks they are magical!

BOOKS- particularly anything pink… and princess… or Barbie.

TEA PARTY- We will take her Tea Set for all those days when she cannot eat.  Hopefully that will pacify the beast for a bit.

IPHONE games- Kyleigh has really gotten into a matching game and a puzzle game on my iphone.  I will likely put a handful more on there for her NEW before we go… you know the novelty of NEW things is always best!  So if you have suggestions let me know!

Any OTHER suggestions would be GREAT!!!  I know I will likely pack the entire house but hey.. a woman’s got to have options!

For our friends and family here… we will need your help and support in helping our boys to continue their lives normally. Ross and Owen will BOTH be in school and we do NOT want them to have to miss anymore life events or school for Kyleigh’s issues. Its not fair to them… so anyone who is willing to help out with our boys at home for a few hours one or two nights a week, that would be awesome! That way my parents can come to the hospital and relieve me or so Troy can come…. we know that this will be an undertaking by everyone but you know I believe one of the truest statements ever made was “It takes a village to raise a child”.
For our friends far away… I know that you all are SO willing to help because most of you have BEEN where we are going be it with urology, PSARP, or other surgeries. What can you do? PRAY! Call… write… keep me entertained while I am cooped up in the hospital room! LOL If you are going to be in cincy (once we know our dates) feel free to stop by and say hi!!!

Most of all we are asking that everyone join in with us NOW in praying that the PERFECT path be paved toward this surgery. We ask that you would pray for peace for our families and for strength for Troy and I. Pray that Kyleigh’s body would be perfectly prepared for the upcoming trauma and that God would speed the healing process.

Just as we always ask during surgeries we ask that you pray for our medical professionals. Pray for Drs. Alam and Levitt ( and ANY of their staff ) that their lives would be BLESSED. That their families would be BLESSED. That their paths would be made straight and that any stresses in their lives would begin to absolve themselves. Pray that their minds would be clear, that their purpose and intentions would be upright, that they would receive clarity and WISDOM beyond measure to handle ANY surgery, complications etc. that may arise. Pray that they would understand Kyleigh’s issues with pain management. Pray most of all that their hearts and ears would be OPEN to HEAR from us as parents when we tell them things that we “know” because there are times when I cannot REASONABLY explain how I know things… other than divine knowledge… but I do. I know Kyleigh and God has given me a gift to be able to be so in tune with her.. but it doesn’t do much good if it falls on deaf ears…

Start praying now and I know that our journey toward this will be smooth.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…
• October 26, 2009 -- Do not be anxious about anything…
• August 26, 2010 -- Be Still…
• January 12, 2010 -- Coming Home!
• November 22, 2009 -- Making Peace…

Yes, Ky is now sporting a bit of a pixie look.  I was honestly ready to cut her hair anyhow but she hastened the process when she took two huge CHUNKS out of it herself with the surgical scissors from her bedroom drawer…  Why? One might ask, does one keep surgical scissors in a 3 year old’s room.  Well lets see… there was the ostomy and then the broviac and then… you get the point.  The scissors are kept on a LOCKED shelf about 3 feet ABOVE her changing table so she was houdini to even get them in her hands!

I was pretty upset when I first saw the carnage.  I panicked for a minute and then decided we had to find some way to straighten it out!

At any rate I found a little style that I thought I could cut around the damage she did and I think it turned out pretty cute!!!  What do you think???

She was obviously devastated by the hair carnage… or not.

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…
• June 30, 2010 -- Because Mermaids need water…
• June 29, 2010 -- Call me crazy… but we had a yard sale!
• May 7, 2010 -- David had Goliath… Kyleigh had THE POTTY!
• February 23, 2010 -- So it begins, Kyleigh’s next medical journey.

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!

Yes…. the first snow of the season!!!  It came EARLY this year!  Normally, its well into January before we see any kind of accumulation.  The kids were, of course, elated and DYING to go outside.  We obliged since it was 30 something (thus their poorly dressed status!)….

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!
• November 8, 2009 -- Christmas Card Preview!
• October 31, 2009 -- Carving and Couponing…
• August 28, 2009 -- Another few faves from Gulf Shores…
• August 26, 2009 -- Wordless Wednesday

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!

I would TOTALLY make this outfit for Ky for turkey day… I mean REALLY!  Have you EVER seen anything so cute in all your life?  Ky would TOTALLY rock this!  I am in love… maybe my FAVORITE set of clothing that I have found this year!  If I were not saving up for my VICTORY that God is giving us I would SO buy this!  LOL  Alas God’s victory wins out… maybe next year!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…
• June 30, 2010 -- Because Mermaids need water…
• June 29, 2010 -- Call me crazy… but we had a yard sale!
• May 7, 2010 -- David had Goliath… Kyleigh had THE POTTY!
• February 23, 2010 -- So it begins, Kyleigh’s next medical journey.