How Precious...

... are our loved ones.

My family means so very much to me. My husband and two kids and I are very, very close. Even closer, I think because of all the circumstances we have been through. Have we made mistakes? Oh my yes! Have I made mistakes? Wow, you just don't even want to know... :) Again, I digress...

We have the wonderful privilege this year of having family come for Christmas. We actually don't get the opportunity to see family very often. You see, we're from the South and ALL of our family is in the south - but, our daughter can't live in the south. It's also really dangerous for her to travel to the "hot" states and definitely not recommended. Travel is also very expensive and we live a long way away from all of them! (We lived in Alaska for several years, and it was positively a LONG way away!) :)

That's why this year is so special. The kids are SO excited to share this with the rest of their family. Things are settling into a routine, the kids are doing great in school, a LOT of the stress has been lifted from our shoulders and we feel like we are home.

There's still some really rough roads ahead, there's still a lot of stress... but, you know what? It doesn't really matter... God is good and He is God.
And how precious is it that He gave us our families?

Fun, Fun

An old friend has this on her blog - (hey, Michele, I'm not calling you "old" - just that we've known each other a loooooooooooooooooooong time) lol

It was a lot of fun - so I thought I'd share :)

Can anyone guess about the outdoor part? Of course, the quiz doesn't know us - but our house is REALLY cold :)

Merry Christmas!



Frosty the Snowman
For you, every day is worth celebrating, because it's finally winter! You spend as much time as possible outdoors with your friends. You'll take cold, snowy air over a stuffy, overheated building anytime. (Could someone please turn that thermostat down?) Since you like the cold, you don't always bother to bundle up, but you look great in winter accessories like scarves and hats.





Eggnog
Some people spend all winter complaining about the temperature, but not you. You're equally happy whether you're ice cold or steamy hot. You believe traditions are an important part of the holiday season, and you probably love rediscovering the decorations you made when you were little. All that old-timey awesomeness is heart-warming, but your personality also has a spicy sprinkle of nutmeg that keeps the holidays exciting and inspires you to start new traditions, year after year.

29,000 pages and counting

I think you all should know that I love to read. Well, that has been passed on to both of my children :). My husband, bless his heart - teases us about all our "reading" - and every time we have moved (which has been many times in the past 16 years of marriage) he talks about all the boxes of books and music. (I should give a prize if someone could actually guess how many, but, I'm rabbit trail-ing...)

Anyway, yesterday was report-card day here. And we keep track of everything for school - even the amount of pages that the kids read each quarter. :) (Those of you who know us really well, are probably laughing now...you know where I'm going...) And I give awards for how many pages they have read. This quarter has been ... different to say the least, we've had a little extra excitement (a tad bit of an understatement there) and a move... which gave extra time for reading. I really had no idea...

Kayla is 10 years old and when I presented report cards yesterday, I think Jeremy just about fell out of his chair. Kayla read over 14,400 pages in this quarter alone! (I checked, and triple-checked!) These are not picture books, mind you --- REAL books - 3 and 4 hundred page books! There was a shorter series of 40 books, that she read TWICE because she liked them so much! This school year she has read over 29,000 pages! (And we only have one more quarter in this school year - who knows how many she'll finish the year with!)

Are you inspired, yet? :)

Since we are getting close to the new year, I thought I'd give out a challenge. Instead of turning on the TV - go pick up a good book (THE Good Book is the best) -and there are TONS of great Christian Fiction out there now (if you need help picking something - send a comment and I'll help)- and great non-Fiction too - great Bible Studies - the list could go on and on...

Personally, I'm going to go add up my reading list (yes, I keep one too) and see how many pages I need to read to catch up to my ten year old!

Happy Reading!

Hope

Think about what Christmas really means to you. (You keep thinking, we'll get back to your answer in a minute.)

This past weekend, I hosted a Christmas party for our local ACFW group. We had an incredible time of fellowship and fun together and at the end, we sat around and talked about this very topic. Christmas is so very special and precious to me. I love to decorate for it (in fact for years, I've had a Christmas tree and nativity scene in every room, even the bathrooms- okay so tell me I'm nuts), I love the music, the time together as a family and I love celebrating the Greatest Gift of all coming to earth for you and for me. It bugs me when people say "Happy Holidays" instead of "Merry Christmas". Why did we start taking Christ out of Christmas? Why are we Christians, letting it happen?

David Phelps wrote a song on his new Christmas CD entitled If Christmas Never Came.
It's a beautifully haunting melody that depicts if Christmas never came, we wouldn't have stockings, or decorations, or church bells ringing, or carols ... or hope. The last lines of the song, "... there'd be no hope for me ... If Christmas never came" are so very moving.

You and I would be without hope had our Savior not come to earth to sacrifice Himself for us.

So, what does Christmas mean to you?

What can you and I be sharing with everyone this season and every season? Hope.
Hope.

The world is lost and dying - we need to be sharing what we have.
Jesus Christ is the Son of God.
He was born of a virgin, He lived a perfect, sinless life, He loved the 'unlovable', He gave Himself up for you and me, taking our sin and shame upon Himself. He was tortured and crucified. He died for you and me. And then... He rose again on the third day.

No matter where you are or what you have done, He loves you and gave Himself for you.
We are all the same. Sinners. No one is better than another.

Get out there and show the love and joy from our great God. Share the hope!
Merry Christmas!

Extreme Makeover Home Edition

Most of you know by now that we were chosen for EMHE! It has been an incredible time and an extraordinary experience!

Our episode is set to air on January 13,2008. I pray you will all be blessed and that the Lord is glorified through it.

Thank you all so much for everything!

More Cool Stuff about the Show...

We are so blessed. I keep saying that, and I mean it.

The FedEx guy just dropped off another package... from people who don't even know us, but, care so deeply and so much. I'm amazed yet again, at the love within the body of Christ.

In this package, there is a scrapbook- full of notes and pictures from David Phelps' message boards. People who have prayed and given and loved. I cried. Yes, a lot.

I don't know if any of them will read this, but THANK YOU. You have blessed our family in an incredible way.

Please watch EMHE on January 13th. There's only so much I'm allowed to say - so please watch the show :)

In Him Who is Almighty God,
Kim

Our Extreme Makeover Airing

I started this the other day but, forgot to finish and publish it!

We have been informed that our episode of Extreme Makeover: Home Edition will air January 13, 2008.

I hope that you will all be blessed by it and that the Lord will be glorified through it.

Thank you all so much for your love and support.

One Wintry Night

I know, I know - my husband says music people are "weird" - and he's probably right, But, we love to talk about music and I have to say that David Phelps' new Christmas CD, One Wintry Night, is about the best thing I've ever heard. I was so impressed with all of it.

Those of us who were music majors ('music geeks' as Holly and I say) will understand. Not only is David the most talented singer out there - but he is also talented with his writing and arranging. We have a system around here for "grading" music. The best is only when I get chill bumps on my arms from the sound. David's music does that. Ever since the first time I heard End of the Beginning all those years ago.

My friend Lori was here - and she loves music - but, she probably was beginning to think I'm REALLY weird (oh wait, she already knows that!) And we were working on these intricate ornaments and I kept muttering - "ooh listen to those chord progressions...", "love that dissonance ... where will he go this time with the resolution...", "how long can he possibly hold that note out ... oh my word, that must have been at least 12 measures!" and "listen to the variations ..." Lori probably got tired of that - but she was loving it (the music, not my mumbling) as well!

Okay, so my whole point - you need to go out and puchase this CD! It is amazing! His first Christmas album, Joy, Joy - is still one of my favorites - he is accompanied by this incredible brass ensemble - oh my word - don't get me started!

Be blessed. God has given him a gift and he is sharing it with all of us. (This would make great gifts for Christmas!)

Thanksgiving

God is so good.

There are so many people that we know that are hurting, and people being attacked - and yet, I still have to say, "God is SO good".

Why do I say that? How can I say that? Well, because it's true.

I have a writer friend who just found out she has a malignant brain tumor - and to read her blog (www.christianlovestories.blogspot.com ) you see how they are still praising God. What a testimony! I have another friend who lost a child a few years ago, our own daughter went through brain surgery and has an incurable rare nerve disorder, and through it all, we all can say - God is so good.

Why? How? Think about a really tough time in your life. Did you come out of it stronger? Did you learn some valuable lessons through it? I know I have. And it was during all of the really tough times that I totally relied upon Him and He showed me His incredible grace and goodness. I also know going through those tough times, shows you how unimportant all of the other "stuff" really is. I'm thankful for the really tough times. I'm thankful for the trials. I'm thankful for His goodness. I'm thankful that He loves us so much that He sacrificed everything for you and me. I'm thankful that our time here on earth is not eternity. And that all the junk, lies, gossip, sin and hard times will vanish one day.

As we approach Thanksgiving and Christmas, we look forward to family and friends, fun and food. But, this season is my favorite because it stands for the greatest Gift of all. I'm thankful for all that God has done, is doing, and will do in my life. I look forward to being able to share with more people what He really means to me.

God is so good.
And I am so thankful.
Proverbs 3:5,6
"Trust in the LORD with all your heart and lean not unto your own understanding. In all your ways acknowledge Him and He will direct your paths."

THANK YOU

... to all who gave of themselves, their time, their love, their sweat, their tears, their supplies, their hard work, and everything else I can't think of - THANK YOU!!!!

I'm completely amazed every day at the outpouring of love and friendship we are still receiving.

In a note given to us - it sums it up: "It's not about getting on TV or meeting someone famous or even feeling good about ourselves for participating. It's about people and caring about people. There was a need, and the need was met. That's what community is supposed to be about."

THANK YOU. From my heart to yours.

Our Builder

I had the urge to blog about this - so here I go:

We have had the most incredible experience with our builder Matt and his guys from Premier Homes. It has been so neat to get to know all these wonderful people and they have embraced us like family and taken care of us every step of the way.

Let me tell you, we've had several brand new homes before and never have we had such a great thing. I'm amazed at the craftmanship and all the love poured into this home.

Anyway, I was sitting here thinking about all of the things we have to be thankful for and I am so thankful for and privileged to know people like Matt and his family, Tony and Daniel. They'll probably never see this, but I had to let everyone know. Thanks guys!

Blessings and Forgiveness

We have been so very blessed! (And I'm not just talking about the incredible home thing that just happened!)

We have been blessed to receive the free gift of salvation. Do you ever take this for granted? Do you ever take forgiveness for granted? Wow - really think about that one . . .

Let me give you a few of my thoughts. The Lord has blessed us through ABC, EMHE, and our INCREDIBLE community. We have tried with all our might to make sure that He is glorified through it - but we are also imperfect, sinful creatures - we are not perfect. The enemy has been on the attack - and we haven't even had the chance to let it sink in because it has been so hard. I keep thinking that one of these days I'll get to breathe a deep sigh of relief :)

In the process of all of this, I am really working hard on forgiveness. There have been lies said and deceitful things done that have hurt deeply, and guess what? It was "Christians" who did it - but, isn't that the best way to attack? The enemy wants to see us divided and wounded, angry and not getting along. Are we going to let him win at his little game? Or are we going to keep going, working at it, forgiving no matter what?

I wrote a post a while back about how we might need to love one another a little more. I have had so much positive feedback from that post :) it made me realize that that is what is happening to the body of Christ - we've stopped loving one another and instead get jealous or angry. Petty things like, "everybody likes you more than me," or "you get more attention than me" are ruining the church. Trying to get rid of the people that disagree with you rather than working out your conflicts are leading innocent people astray and why non-Christians don't want to have anything to do with Christianity. Legalism is sucking the life out of believers.

I'm going to reiterate what I wrote a while back:
"So, my question is this: What can we be doing for each other that would help us come together to make the beautiful creation He has intended us to be? Maybe we need to spend a little more time encouraging one another. Maybe we need to spend a little more time praying for one another. And maybe, we need to spend a little more time loving one another."

Extreme Makeover

A lot of you have probably heard by now that we were chosen for Extreme Makeover: Home Edition! It's so exciting and surreal - and we are still completely overwhelmed! :)

Our episode will air probably sometime in January and I will post the air date as soon as I know it - but as far as any details -- you'll just have to wait and watch on ABC!

Thank you to all who helped on this project -- our community is truly incredible! We have been so blessed by the outpouring of love and by our great God.

Closets to Clean Out

Have you ever had a closet that was a disaster? And you finally tackled the daunting project, sat back and looked at the great job you did? Later in the day you went back, opened the door and smiled -- reveling in the fact that you completed such a huge feat, and patted yourself on the back for what great organizational skills you have!

You have two or three other closets that need re-doing, but for the next few weeks you keep going back to that beautiful closet, opening the door and smiling. "I'll get to the others soon," you say, and yet keep passing them by.

Isn't this just like sin in our lives? We're willing to get rid of one sin - and then we want to rejoice in the fact that that one is gone - but ignore the others because they're just too hard to let go of. I see an endless hallway of closets in my mind - and one by one - He wants me to clean them up. Not just clean it and then stand back and gaze at my handiwork . . . but to gently prod me on to attack the next closet.

I use this illustration a lot as I think about our Christian walk. Every day we are supposed to be learning and growing in the Lord -- getting closer to Him each day -- and as we learn and grow, we see the imperfections that He wants us to work on. The closer I get to the Lord, the more I find. Some are very minute, but He wants to help me work on them -- one at a time. Until I am a pure reflection of Him. James 1:2-4 is a perfect passage for this -- the end of the verses say this, ". . . perseverance must finish its work so that you may be mature and complete, not lacking anything." Wow! I want to be mature and complete! But to do that, I must persevere. I haven't done the greatest job at that. I have back-tracked, side-tracked, zig-zag-tracked, and every other kind of off-track you can come up with. I am however, determined to keep on. I must clean out all of my closets, one at a time. And not go back and dwell on what a great job I did -- but to keep moving forward, knowing that He wants to finish a work in me.

Cake Anyone?

This past week I've planned, lived and breathed (literally- but we'll get to that later) - a wedding cake. Joe and Kendra are about the sweetest young couple I've met and they are like family to us. Little did I know what an adventure their cake would turn out to be.

This particular cake reminded me of the body of believers. The analogy of the "body" - and all of us being different parts and given different talents is one of my favorites (i.e. - You may be a hand, I may be a foot - but we are all important parts and useful- it's in the Bible guys, go look it up!) Anyway, as I was making this cake I thought of all of us. Twenty different layers of cake had to made, cooled, leveled, iced, and smoothed. All the buttercream icing had to be made (and I inhaled so much powdered sugar it's not even funny). Hundreds of roses were made by hand, petal by petal, dried and then placed precisely in their spot surrounded by 400 piped in leaves. All the tiers had to be placed on special boards, and packed in separate boxes to make the arduous journey up a winding mountain highway and then a dirt road to the mountain resort. Hours before the wedding - came the daunting task of assembly. One by one, all seven tiers took their place. Lots of icing was used to make the final border on each tier - ribbon, butterflies and petals were added. It all came together to make a beautiful creation.

As Christians, we should be doing the same - coming together to be beautiful and do beautiful work for our great God. When you are making a cake, icing can fix just about anything. Sometimes, some of us need a little more "icing" than others - meaning a little more encouragement to hold us up and keep us from falling apart. :)

So, my question is this: What can we be doing for each other that would help us come together to make the beautiful creation He has intended us to be? Maybe we need to spend a little more time encouraging one another. Maybe we need to spend a little more time praying for one another. And maybe, we need to spend a little more time loving one another.

Chocolate Chip Pancakes

Chocolate chip pancakes, homemade strawberry syrup, fresh whipped cream . . . Are you hungry?

Every once in a while, I go all out and make this ooey-gooey, sweet, chocolatey breakfast. The kids love it and we all enjoy piling up the plates. This picture is actually from July 4 - not only a special day, but one that holds special significance to me because God taught me another lesson.

We have a rule in our house that there is no whining, grumbling or complaining. (There's actually a 5 cent fine for the kiddos!) Well, on the morning of July 4 as we were preparing to have our "indoor" parade and fixing up all of our goodies for the day -- I watched Holly as she ate her chocolate chip pancakes. She enjoyed every little bite, closing her eyes as she savored the flavors, licking her lips and sighing. (Did I mention that she's an adult?) I chuckled as I watched her and was reminded that God gives us so many of these experiences. Every moment of every day should be an act of worship - and we should cherish every little thing that He so graciously gives us -- even something as small as eating a plate of chocolate chip pancakes. But . . . do we?

How many adults do you know that whine and grumble and complain? I know quite a few - and I'm ashamed to say, myself included. Oh, you may not hear it - it may just be that I'm whining in my head - but, I'm whining just the same. Chocolate chip pancakes that day reminded me of the rule I have for my children. I would never let them say, "Why does she have more chocolate chips than me?" or "My whipped cream isn't touching all the pancakes!" But - Wow! Have you listened to some of the adults around you lately? How about yourself? Ouch.

The Bible tells us to do all things without grumbling or complaining. (Don't you like my emphasis?) How are you doing on that one? Maybe we should all make signs (like the one in my schoolroom) - and fine ourselves for whining, grumbling or complaining. We have SO much to be thankful for and yet, we focus on what we don't have or what we can't do or how hard life is!

What kind of examples are we being? And what do others see in us? Are they going to walk away from us and think, "Whew, she sure is a complainer!" Or will they see that we can worship and glorify God even through the tough times?

I'm challenged to work on this, how about you? And suddenly, I have a hankering for chocolate chip pancakes.

Running... out of time

I'm always amazed at how time flies! Our beautiful daughter had brain surgery 11 months ago; it feels like it was just yesterday, and it also feels like a lifetime has passed since then. Where did the time go? My kids were babies just yesterday . . . weren't they? My beautiful sister reminded me that my son will be a teenager soon . . . let's just NOT go there! :)

In the midst of homeschooling and everyday life (and all of the chaos from the past couple of years) -- I actually have people who think since we are home all of the time that I have lots of time on my hands! To this, I have to laugh. Yes, we don't go anywhere and we don't get out of the house much - but, we CAN'T. Our lives are different from everyone else. Kayla must live in a constant temperature - to change that could put her life at risk. Our world is inside our home. And our lives are VERY busy. Homeschooling takes up a huge amount of time, but we love it.

Well, I digress. I'm a musician and I love music and all my training, but I feel the Lord has called me to write. I have been writing for about 10 years now - but for the longest time was afraid to even tell anyone! I basically thought it was a good outlet for me - you know for all of this creative energy and thought that we "artsy, creative" types have. :) (My husband teases me about my "wheels" always turning and that I can't shut them off- I try, but I fail . . . every time.) Anyway, several very influential people helped me to see that I was hiding in my fear. So, I ventured forth. Tracie, Jim, Heather, Mary, Polly, Carrie and many others have been there to encourage and are ready to prod me along-- even to give that occasional "kick in the pants" that I really DO need! :) God is so good to provide just what and who we need at the right times.

My title for this was: Running . . . out of time. Aren't we all running? Shouldn't we be running? Hebrews 12:1-3 says this, "Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance, and the sin which so easily entangles us, and let us run with endurance the race that is set before us, fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. For consider Him who has endured such hostility by sinners against Himself, so that you may not grow weary and lose heart." (NASB)

So yes, I'm running. And I'm running out of time - we ALL are. I'm running the race set before me and as the enemy tries to steal my time (especially my writing time, it seems) I'm going to keep ON running. How many more people will God place in my path? I don't know - because I don't know how much time I have left -- but I DO know that He wants me - and all of us - to be lights for Him, use the gifts that He has given us, and keep running the race.

Throw off those encumbrances, get rid of that sin, fix your eyes on Jesus and let's run with whatever amount of time we have left.

Legacy of Love

I'm working on a story idea that is inspired by my grandparents. I wish you all could know them because they are incredible people. They have been married 65 years and pass down a legacy to us that could never be duplicated. (We can try, mind you, but we'll never achieve it.) Every morning - and I mean EVERY morning - for all this time -- they have prayed for each member of our family and our needs. (And let me tell you, that is no small feat as there are more than 50 of us now.)

So, as I am working on a contemporary Alaska series right now - this idea keeps popping in my mind and I've added more and more to the file - Legacy of Love. (David Phelps - my favorite Christian Artist - has a song entitled by that too.) It brings me to this question: What are we (you and I) passing on to our children? ... to others around us? Are we just going through the motions - doing just enough to make it through the day? Do we look back at the past days, weeks, months, even years and say, "Where did the time go?" And to those of you who know us and all that has gone on in our lives the past few years understand how easy it would be to just keep saying, "I just have to get past ______". It's true, I've said it many times!

Personally, I desire so much more than that. I'm praying that I will keep my focus. That I will concentrate on things of eternal value and not those that are wood, hay and stubble. And as I bask in HIS amazing Grace and Love - to be reminded that I am forgiven and need to run the race that is set before me.

My Grandparents have been a true and living example of that. Thank you Grandma and Grandpa.

Kayla Woodhouse

Meet Kayla, a blonde haired, blue-eyed little girl with a gigantic smile, a tender heart and a disorder so rare that she is the only child exactly like her in the entire world with her particular form of the disorder. This rare nerve disorder is called Hereditary Sensory Autonomic Neuropathy (HSAN). Her body does not signal her brain to regulate her body temperature and she cannot feel pain unless it is extremely intense.

Most recently, Kayla was diagnosed with another rare problem completely unrelated to her HSAN. In March 2006, after over a year of severe headaches, doctors found a malformation in the lower portion of Kayla’s brain. As a result, her brain was growing into her spinal column and to avoid long-term damage and paralysis in September of 2006, Kayla had brain decompression surgery.

She will never be able to play sports, run at recess, or participate in most other normal childhood activities. But, she is surrounded by a loving family and supportive network of friends who always remind her of the things she CAN do. This is her story…

Kayla Article by Laura Howe

Kayla Woodhouse

Meet Kayla, a blonde haired, blue-eyed little girl with a gigantic smile, a tender heart and a disorder so rare that she is the only child exactly like her in the entire world with her particular form of the disorder. This rare nerve disorder is called Hereditary Sensory Autonomic Neuropathy (HSAN). Her body does not signal her brain to regulate her body temperature and she cannot feel pain unless it is extremely intense.

Most recently, Kayla was diagnosed with another rare problem completely unrelated to her HSAN. In March 2006, after over a year of severe headaches, doctors found a malformation in the lower portion of Kayla’s brain. As a result, her brain was growing into her spinal column and to avoid long-term damage and paralysis in September of 2006, Kayla had brain decompression surgery.

She will never be able to play sports, run at recess, or participate in most other normal childhood activities. But, she is surrounded by a loving family and supportive network of friends who always remind her of the things she CAN do. This is her story…

Remember the joys of childhood? Walking around without shoes and socks with the grass tickling your feet? The sun shining on your face as you swing at the park feeling as if you could soar? Running the bases in a little league game with a dream in your heart to one day become a champion? Imagine if you were a child watching this through a window because it was too dangerous for you step outside in the middle of a warm summer day….

Kayla Woodhouse was born on March 26, 1997 to Jeremy and Kim Woodhouse in Lake Charles, Louisiana. She was a beautiful little girl who appeared to be healthy and was adored by her entire family, including her two-year-old brother Joshua. In the first few months of her life as her mom struggled a bit with the “baby blues” and in the busyness of being the mom of a newborn and a toddler, the Woodhouse family spent much of their time in the house. They would later discover that this time inside probably saved Kayla’s life.

THE FIRST SIGNS

Living in South Louisiana it is difficult to avoid the heat. Kayla’s parents would notice that she quickly turned red when she got hot and assumed this was a normal response to her environment. As the year progressed they had a very cold winter and a cold spring and just around Kayla’s first birthday the family moved to South Arkansas where Jeremy took a job as a Youth Pastor and a Director of a camp owned by the church. In May 1998 Jeremy went up to the camp to get it cleaned-up for the summer and in the middle of the week Kim and the kids drove up to visit him. Within about ten minutes of arriving they found a little playground. Josh excitedly jumped out of the double stroller to go play and Kayla wanted to follow. As Kim picked Kayla up out of the stroller and set her down, she saw she was red, her eyes glazed over and Kayla fell to the ground and passed out cold. Kim quickly ran her to their van, turned the air conditioning on high to cool her down, and Kayla soon came around and drank three cups of juice. She remained lethargic and her eyes were glassy so they drove from the isolated camp to the local emergency room of the small town near the camp. There, the got their first diagnosis: “Heat Exhaustion Syndrome” and they were sent home. Later they would find that this syndrome does not even exist.

BEGINNING DIAGNOSIS

Dr. Carlos Anaya was a wonderful pediatrician who had a strong desire to discover the root of Kayla’s sensitivity to heat. At the age of 14 months, Kayla went through a heat test at the local hospital. They placed her in a room that was 85 degrees and after about five minutes she was bright red but she wasn’t sweating, an atypical response to heat. That night, when the Woodhouse family arrived home from the hospital, Jim Robinson, a man from their church, brought them copies of Internet research he had done. Ironically, Jim was a former submariner and part of an organization called CAUSS – a group of retired submariners who donated to organizations that helped children who had to live in a submarine type environment. Jim was familiar with the HED Foundation (later the Sarah Moody Foundation) – a resource for parents of children with Hypo-Hydrotic Ectodermal Displasia; a disorder in which children are born without sweat glands. Sarah Moody was the founder of the HED Foundation who as part of their mission provide funds for special “cool vests” for children who need them to survive in warm environments. Unbeknownst to the Woodhouses, Jim had already put Kayla’s name in for a vest. Two weeks after his request, and a year before her correct diagnosis, Kayla received her first vest and a phone call from Sarah Moody. The vest offered Kayla freedom. It protected her from overheating when she was inside and provided her the opportunity to play outside for short periods of time. Although her doctor was not convinced it was HED, he suggested the family live as though Kayla had the disorder and he scheduled them for an appointment with a specialist in the field. They had to wait three months for an appointment. Dr. Anaya had requested that the specialist do a skin biopsy and a sweat test to confirm the HED. In the three months they waited, they radically changed the way they lived their life, now aware of the reality that Kayla could not get hot at all. She could not be in an environment higher then 75 degrees without fatal consequences. She always had to be in air conditioning. Running errands was no longer easy. Someone would have to baby-sit Kayla. Or, if the store was cool enough, she could join the family on the shopping trip but after shopping someone would have to stay in the store with her while her mom drove around the parking lot to get the car cool enough for a safe trip back home. The family learned to live in a 65-degree house to keep the temperature cool enough so Kayla’s body did not overheat.

At this time people began to step up to support and encourage the family. One couple donated funds for the Woodhouses to purchase outdoor play equipment so that Kayla could have it in her yard and go out at night when it was below 80 degrees with her vest on and she could play for about fifteen or twenty minutes before getting too hot. This was an additional blessing to her big brother Josh who had been restricted to inside living because he was too young to go out on his own.

Kayla as a toddler watching the outside world from inside her home.

VISIT TO A SPECIALIST

After waiting three months they made the three-hour drive to see the dermatologist who was supposed to be an expert in the field. He entered their room followed by an entourage of about ten other attending physicians, asked questions of Kim and then would leave the room and come back in. He kept telling them Kayla “looked perfectly normal” and refused to do the skin biopsy and sweat test. His greater concern was her eczema – a dry skin condition she’d had most of her life. It was clear he would do nothing related to her possible HED, he wouldn’t even touch her, because he felt she appeared “normal.” As a “specialist” in the condition of HED, he had never seen the cool vest nor heard of the HED Foundation. This was a discouraging visit and the Woodhouses were crushed as they were sent home with a diagnosis of eczema; something they already knew much about. Joshua had had infantile eczema and so they didn’t feel like the eczema was life threatening or related to her heat disorder. Upon arriving home they talked with Dr. Anaya and shared the news of their long-awaited visit. He was angry the specialist had not done the tests and wrote a letter to him sharing this. The specialist called later to apologize to the Woodhouse family and advised them to go to a “larger” city where other doctors may be better able to help.

SIGNIFICANT CLUES

That summer, when Kayla was about 18 months old and Joshua was 3 ½ they were in Joshua’s room playing while Kim was cooking in the kitchen across the hall. Kim hears Josh begin screaming and when she ran into the room, Kayla was not crying, holding onto a Little Tykes plastic hammer, covered in blood with a small hole in her head. Screaming in the corner, it took a while to get Josh calmed down enough to find out what had happened. He explained that Kayla had taken his blocks away and when she took them he got mad and hammered a plastic block into her head. In response Kayla got mad and yanked the hammer out of his hand and started chasing him and hitting him with it, unaware of the injury to her head. They later shared this with the pediatrician as it was evident Josh felt pain and Kayla did not. About two or three weeks following this incident, they were eating dinner at a friend’s whose house was fully tiled with ceramic tiles. Kayla kept purposefully diving from the top of the couch onto the floor, watching to see if her dad would catch her. Her dad scolded her as she continued to climb, he would frantically try to catch her, and she repeatedly thought it was a game, having no fear of being hurt. Occasionally, a part of her body would hit the hard floor and she would get up and do it again. She had no fear of falling and hitting her head on the floor because she could not feel the pain. In addition, from the time she started walking and running they would have to constantly remind her not to run hard into walls because she seemed unaware that she was hurting herself.

Just before Christmas there was an event at church for the youth group that Kim and Jeremy planned to attend. While they were waiting for their baby-sitter to arrive they noticed Kayla, a typical toddler, was chewing on something and had a little green piece sticking out of her mouth. When Kim pulled it out she realized it was a light bulb from the Christmas tree. They found the spot on the string of lights on the tree where she had pulled it off from the tree by her mouth. She had chewed it so thoroughly that she had crushed the glass down to powder so it didn’t hurt her stomach when she swallowed it. A trip to the hospital proved she was okay. The mystery of this was that the tongue is typically extremely sensitive to pain. She had blood in her mouth from the glass cutting her so they could not understand why she couldn’t have felt pain as she chewed the glass.

BIRMINGHAM CHILDRENS HOSPITAL

In September 1998 they took the specialist’s advice and searched for a hospital in a larger city – leading them to Birmingham Children’s Hospital in Alabama where they had family living. The day they contacted Birmingham Children’s Hospital they were immediately scheduled for all the tests they had hoped to get in Arkansas. The doctors did the sweat test and they couldn’t make Kayla sweat. They did a skin biopsy and found she had sweat glands that were capable of functioning but did not. The dermatologist at Birmingham Children’s recommended they wait until Kayla was past 24 months; stating if children are going to grow out of something they typically do so by the age of two. If Kayla didn’t, the doctor thought it was neurological and recommended they see a neurologist. Back in Arkansas, Dr. Anaya was very pleased with their findings and their thoroughness.

They knew how to live as they waited.

BURN TREATMENT

After Christmas of 1998, Kayla started really suffering, as her eczema got worse. She was scratching so badly that she was digging deep holes into her skin. Her parents tried to treat it at home for several weeks. At night, to try to conquer the scratching she did in her sleep, they would tie her sleeper shut at the top of the zipper so she couldn’t get it undone. In addition, they duct-taped socks to her hands so she couldn’t scratch so deeply. They realized the eczema really bothered her. What they would later realize when Kayla was diagnosed is that she was able to feel the itch but not the intensity of her scratching so she was mutilating herself. In the morning, she would wake up with her socks on her hands and sleeper still tied shut but her back was still bleeding. In desperation, her parents called Dr. Anaya. He determined, after seeing her back that she would require a burn treatment to get her back to heal. He called in a nurse to assist with the painful treatment knowing they'd need her to help Kim hold Kayla down throughout the procedure. With a nurse at one end and Kim at the other they worked to clean her back. To the shock of the doctor, Kayla did not flinch. As soon as the treatment was over he pulled Kim out of the office and shared that Kayla should have felt pain and that that experience made him realize that a neurologist needed to be contacted immediately; no more waiting. He scheduled an appointment with a pediatric neurologist that entailed another three-month wait. In April of 1999, they went to see Dr. Terence Edgar, Pediatric Neurologist at Little Rock Children’s hospital.

ANSWERS

When they sat down with Dr. Edgar he asked them to start at the very beginning, sharing everything that had happened in Kayla’s life. When they began to talk, Kim mentioned that her husband was a pastor and Dr. Edgar responded by sharing that he was also a Christian and asked if they would like to pray. To know that they shared their faith in common and had a doctor willing to pray with them was a great encouragement to the Woodhouses in the midst of the long journey they had walked. Following their time of prayer, Kim continued with their story and explained the doctors they had seen, the tests they had done, the results they had received; most expressing the same opinion, “she looks perfectly normal”. When she finished, Dr. Edgar looked at them and said: “I can tell you exactly what it is right now and then I will prove it to you.”

He believed Kayla had a very rare nerve disorder called Hereditary Sensory Autonomic Neuropathy; a disorder so rare that only twenty children in the entire world are known to have it. As Kayla sat in Kim’s lap Dr. Edgar proceeded to touch her and tickle her and she would feel and respond to the slightest touch. However, the harder he touched her and pinched her it was clear she could feel it but could not discern its intensity. Immediately, this explained her episodes with the eczema – she would scratch because it irritated her but she could not regulate the intensity of her scratch. Because she could not feel how much pressure she was applying with the scratch, she would dig holes in her skin. Then he broke a tongue depressor in half. He was trying to show them the intensity factor (pain factor) and he would poke her and scratch her with it and she would just look at him like “don’t do that any more” but not because it was painful. At one point Jeremy got a little protective as the doctor pinched the inside of her leg and twisted the skin to get her to react. In response she just turned away and looked at the doctor with no reaction. He explained that the post-ganglionic sympathetic nerve is missing fibers so the nerve does not signal the brain anything intensity related. She can feel things but she can’t tell the difference between a soft touch and a hard pat. So, she cannot tell that something is painful. She is unable to determine that she is too hot or too cold. As a result, she does not sweat. This also gave the Woodhouses answers in regards to her eczema. The nerves do not send signals to the brain that the skin is too dry so her brain cannot send messages to the body to lubricate the skin – resulting in extremely dry skin. At the end of the appointment Dr. Edgar set-up a nerve conduction study to be done the following month. In this study they sedated Kayla and put pins throughout her body to see the inside of her nerves and get various types of readings. They discovered that it takes Kayla 20 to 30 times the intensity for her to feel something. Dr. Edgar encouraged them that this was good news. Some children with HSAN cannot feel anything unless it is 100 times the intensity, resulting in devastating consequences.

There was a lot to digest on their three hour drive home as they realized the diagnosis was a permanent, life-changing event. Everything was suddenly final at that point when they realized the diagnosis had been confirmed. And, they knew that not only would she live like a child who could not sweat but also a lot of things would have to change because of the “no pain” factor. Jeremy was thankful for a correct diagnosis after such a long wait. Kim was also thankful they finally had answers, but it was both devastating and overwhelming to realize her child would have to live with all of this forever. It couldn’t be fixed.

She tried to imagine what it would be like for Kayla to spend the rest of her life inside.

REALITY OF THE DIAGNOSIS

They soon realized that the “temporary” lifestyle they had been living for the last year now needed to become permanent. They were in the midst of the severe hot months and they began what they explain to be their “confinement.”

The next two years of their life consisted of doing everything inside the house. Heavy drapes were kept pulled so that the heat from the sun wouldn’t warm up the house. The thermostat was kept at 60-65 degrees so the temperature in the house would stay cool while Kayla played. Both children were home-schooled beginning in preschool. Kim chose to do the more “intense” lessons in the summer when the temperatures were hottest so during the “winter” they had the time to play outside. Although most of the time, even in the winter they would have to wait until later in the day and Kayla would have to wear her vest.

It become clear they had to have foresight and really think outside the box, realizing the extenuating circumstances such as a house fire or a car breaking down on a hot summer day could have serious consequences for Kayla. A faulty lint trap in their dryer caught on fire in their home one hot summer day, igniting all of the clothes in the dryer and it filling the house with smoke. Kim called 911 and they instructed her to get out of the house for their safety and she told them she couldn’t because of the heat index of 115 degrees that day. She could not get to her car because she would have to go by the dryer and none of the neighbors were home. As a result, Kim and her children sat at the opposite end of the house with wet towels over their faces while they waited for police to come with an air-conditioned car so they could safely leave their house in the midst of the fire. Had Kayla gone outside, she could have overheated and died in just a couple of minutes in those temperatures.

FOURTH BIRTHDAY TRIP TO THE ALLERGIST

They had been waiting for Kayla to turn four to see a pediatric allergist, as they were getting very concerned about her eczema. Knowing it would always be a part of her life because of her disorder, they wanted to see if there was something they could do to alleviate the discomfort. Allergy testing on her back determined she was severely allergic to dust mites and many other environmental allergens. They also determined she was allergic to lots of common foods including yeast, eggs and nuts. However, doctors suggested they not radically change her diet concerned that if they took everything out of her diet and she was exposed to a trace of it later she could have a severe reaction. So, changing her diet became their last resort to help the eczema. Kim and Jeremy were given lots of information to read and were told they would have to pull up the carpet, buy all leather furniture, and cover their mattresses because they could not control the humidity enough in the South to kill off dust mites. Or, the doctor joked, they could move to Alaska. A couple of weeks following the allergist appointment they visited with a pediatric dermatologist to discuss the results of the allergy tests. His goal was to get the eczema to the point where they could contain it so she would not dig holes in herself. He talked in-depth about how the heat and the humidity made the eczema worse which resulted in more scratching… and he jokingly talked about them moving to a colder climate like Alaska.

Out of the blue a few weeks later a friend called to share that he was putting Jeremy’s name in for a ministry opportunity in Alaska. After much serious prayer and discussion, they decided to move to Alaska so that Kayla could have a more normal life.

They lived in Alaska for four years. For the first time in her life, Kayla could be a normal kid. Most days she could play outside during the day, ride her bike and go to the park without the fear of overheating. But, there were also concerns; they came on cold days when Kayla would run outside without a coat or with flip-flops on and not realize that when it is below zero, ironically, she needed to keep warm. There were also days in the summer in the land of the midnight sun when the temperatures soared and Kayla was once again housebound.

Kayla, Josh and Kim riding bikes in Alaska

A NEW CONCERN

In January of 2005, Kayla overheated and then later developed a serious headache. Because of her tolerance for pain, she had never had a headache that she could feel before so they knew it must be bad. In addition, they noticed her temperature stayed elevated and they couldn’t bring it down. Her normal body temperature is 95.9. Anything over 99 is considered to be very serious. Her temperature was over 100 for six weeks. Doctors could not figure out what was causing the fever. A spinal tap showed she did not have meningitis. Blood work was done numerous times and a CT scan could not give them clues at to what caused the headaches. They were labeling the headaches as migraines by this point because of their severity. During this time the vibrant, bright little girl that everybody had once known began to shut done, her eyes were glassy and she lay curled up in a ball on her oversized teddy bear, not moving. Adults who saw her this way who had known her before would cry because it was difficult seeing the pain and drastic change in her personality. They knew she was in more pain then probably any one could imagine. Doctors wanted them to keep a log of her headaches, temperatures and medications during this time, yet they still could not see consistency in cause, severity, length, etc. to try to determine a cause. Dr. Steve Baker in Alaska was their pediatrician and one of their favorite doctors. Dr. Baker worked hard to discover the cause of headaches but came up with no answers. Dr. Baker had worked so hard to try to get them air conditioning in their home for the summer, and it frustrated him that he could not help. Figuring he was the one who had originally diagnosed her, the Woodhouses contacted Dr. Edgar, who was now in Wisconsin, hoping he might have some insight on Kayla’s condition. He suggested a medication stating she would need an EKG before she started the medication and then at least one more EKG after she had been on it for six weeks to make sure it was not damaging her heart. The doctors in Alaska gradually worked their way up to that medication to see if anything else would work before they tried it. Nothing worked. An EKG was scheduled; she was started on the medication and after nine weeks the headaches finally started to diminish.

MOVE TO COLORADO

The doctors in Alaska knew Kayla needed more specialized attention. Her parents made the decision to move to Colorado; partially to get back to the lower 48 states to be closer to doctors because of the rarity of her disorder. After a week-long visit to Colorado headache-free, they felt that confirmed their decision to move here. Jeremy accepted a position as the associate pastor of a local church and they began their search for affordable housing that would meet their special needs as a family. They found a house out in the country. Although it was a thirty-minute drive from the Springs, it was significantly cheaper then what they could find in Colorado Springs. They returned home, packed up their belongings and after their 5,000-mile drive from Alaska, they arrived in the Springs realizing their house was nowhere near completion and they were without a place to live. They lived in a hotel for 5 weeks and drove around with their realtor trying to find the most space for the least expensive price. They found a home, and American Heating and Sheet Metal (Now First Choice) put them on an emergency medical list, hooking up their air conditioner (which had been donated to them by a company in Alaska) in record time immediately following the closing.

ANOTHER HILL TO CLIMB

Following their move to Colorado Springs they applied for state Medicaid for the children because of Kayla’s unique medical needs. Previously, they have never had trouble qualifying. When they moved here they continuously received denial letters from Medicaid but got an acceptance letter from CHP+ - which doesn’t always cover everything like Medicaid typically does. They were having to pay out of pocket for all of her medications, and were billed for her care at the office – the pediatrician graciously helped so that they wouldn’t have to pay all the costs while they waited for insurance to pick Kayla up. Still looking for answers for her headaches, they needed to see a neurologist. They had to put off the appointment for three months because the hospital wouldn’t take them without insurance or without them being able to pay cash up front. In January of 2006, they were finally able to see the neurologist, Dr. Morgan, who wanted to immediately schedule an MRI in efforts to discover the cause of the headaches. Another roadblock came when they found they would have to wait for the MRI because, although they had an acceptance letter for coverage for Kayla, they had not received insurance cards. It was finally scheduled for March and just a few days following the MRI they received the results and some answers.

Doctor Morgan informed Kayla’s parents that she had a rare condition called “Chiari Malformation of the Brain” with a cyst (called a “syrinx”) below it. They explained that Kayla’s cerebellum tonsils – a part of her brain- hang down into her spinal cord because there is not enough room in the skull for her brain. As a result the brain is pushed into the cavity at the top of the spinal column, putting pressure on the spinal cord and a cyst has formed there. They met with a neurosurgeon the following week. He was very concerned and expected to be operating on Kayla within the next few weeks but first wanted to do another MRI of the full spinal cord. The surgery is called a “brain decompression.” It entails an incision at the back of the head, drilling out a portion of the skull, opening the dura membrane and then putting in a dura graft – which is basically a patch to make the membrane bigger. By taking out a portion of the skull it gives the brain more room. The MRI of the spinal cord was later in the week and the following Monday when they met with the neurosurgeon he felt confident it was fine to wait on the surgery and watch Kayla for six months because the spinal cord was straight and they didn’t find any more syrinxes. As long as Kayla did not become symptomatic (difficulty swallowing, gagging, severe headaches in back of the head, severe balance issues, etc.), the surgery was postponed until Fall 2006.

In one week, Kayla’s parents faced the realization that their daughter had another rare condition - a brain malformation - and she would be having brain surgery. Without the surgery she could face permanent spinal cord injury or paralysis.

Update: Kayla had started falling down the stairs and running into things during the summer. Her heat tolerance was getting worse. Kayla Woodhouse had brain decompression surgery on September 26, 2006. They drilled out a large portion of her skull, part of two vertebrae, opened the dura membraine and put in a dura grapht to make more room for her brain. As of her MRI in March 2007 – her brain is now where it should be, there is plenty of room for it, and miraculously, the syrinx is completely GONE!

Many things have changed for Kayla over the past year. Her heat tolerance is much worse. The house must always be below 62 now – she cannot go outside unless it is less than 55. The sun is dangerous for her – it makes her too hot. She just recovered from a severe double infection in her skin. Think about it: How do you keep a hospital room cool enough?

Kayla will always have her nerve disorder. She will always be confined in hot weather. She will always have severe eczema. Her parents will always be trying to keep her from scratching and mutilating herself, and trying to keep her from hurting herself. Her life will not be “normal” according to the world’s standards. However, her parents desire to offer her as normal a life as possible. They want her to be happy and comfortable. Because of the medical costs and the overwhelming amount of bills the Woodhouses accumulated when they were without insurance for Kayla, and so they could continue to qualify for insurance to cover the costs of her medication and impending surgery, they needed to sell their home quickly and move to a place that was more affordable in the midst of life’s current circumstances.

Unfortunately, their home was for sale almost a year and they have gone through the awful circumstances of foreclosure. Many, many people helped them through this difficult time and they are thankful for their community support.

EVERY DAY LIFE

Life is unique for this family. They spend most of their time inside and Kayla has to be watched and monitored so that she does not overheat or cause damage to herself as a result of her inability to feel pain. Simple things people take for granted could seriously hurt Kayla…

When Kayla was younger her mom was sewing and set her scissors down on the table. Kayla had been observing Kim cut strings off of some clothing, took the scissors and she cut a string off her outfit mimicking her mom as little girls often do. Later, Kim discovered that when Kayla was cutting the string she cut through her clothes and into the skin on her stomach. She never felt a thing.

Cooking with her mom is an activity they do indoors but she has to be closely watched and kept away from the stove and oven because she cannot feel if she is burned.

She applies medicated cream several times a day to her skin and has to be reminded to stop scratching so that she won’t dig holes in her skin. At times Kayla has scratched so hard that she has developed staph infections and her open wounds don’t heal because she continues to scratch.

A working car with air conditioning is a must. If something were to happen to the car on a hot day, it would be very dangerous and they would only have a matter of minutes without air conditioning before it became life-threatening.

They have always had to have some form of a communication device (such as a cell phone) to assure that help is accessible. Kayla wears a special medical bracelet that gives emergency personnel brief information on her disorder with a number to call where they can get information and be told what to watch out for.

They found out when she was a baby that detergents bothered her skin. She always had to have dye-free, fragrance-free detergents to protect her skin from breaking out in an allergic reaction. Whenever they travel to a hotel or stay at someone’s house, they have to wash the sheets in special detergent.

She is severely allergic to dogs and cats. They were noticing that whenever she would be around someone or hug someone that had pets, her skin would have a negative reaction. People close to the family who understood their situation would wash their clothes in the same type of detergent and they would use allergen spray and spray themselves before being around Kayla. Because of her allergies they also have to use a higher quality, heavy- duty filtration vacuum cleaner and special air filters running in their home to keep the air clear of dust mites, pollens, etc. The newest blessing, however, came in the form of a wiggly, wet-nosed birthday present when Kayla and her brother Josh each got a puppy. Doctors suggested that dogs be re-introduced, as outside pets, so that Kayla can build up a tolerance to their dander. It’s working! Her little puppy gets lots of hugs and Kayla’s skin is responding well.

In hot months they are limited as to where they can go. Restaurants, Malls, Target, Wal- Mart, and King Soopers are off limits because the air is not set low enough to keep Kayla’s body temperature at a safe level. In Alaska, they’d have to leave restaurants that had their heat on too high especially in the winter as to not risk her life.

They choose home schooling because Kayla needs to be watched closely to make sure that she doesn’t hurt herself and assure she stays cool. Early on, they realized they couldn’t expect a classroom to set room temperatures in the 60’s for Kayla; and what if there were a substitute teacher one day who didn’t understand fully? Kayla could be sent out to recess, overheat and possibly die. Even the church they attend has air conditioning in the sanctuary but not in any of the other rooms so there is a lot that she cannot be a part of.

Kids can be cruel. Although Kayla has only faced a couple of negative comments in her life, they were painful to her and had lasting effects. At the grocery store when she was about four, another little girl noticed Kayla’s “cool vest” and said: “Look at how weird that little girl looks,” proceeded to ask her if she was wearing a bulletproof vest and if she was worried someone would shoot her. In another instance a little girl saw the eczema on her wrist. It was pretty bad at that time and the little girl said: “Ewww, what is wrong with you?” For a year after that comment Kayla insisted on wearing gloves and long sleeves because she didn’t want anyone to see her eczema. As she has grown, she is learning how to deal with the comments. And, she realizes that God has made her very special. Her parents remind her that she is uniquely created and this shouldn’t be a negative, but a positive – saying: “Wow! Look at what God has done through you…”

WANT TO MAKE A DIFFERENCE?

You can make a difference in Kayla’s life. Perhaps you or someone you know could help with the following:

1.A financial donation of any amount would be gratefully received by Kayla’s family to help with significant medical and housing expenses. The Gift of Pain Foundation has offered to receive your 100% tax-deductible donation on behalf of the Kayla Woodhouse family. Please write your check to the Gift of Pain Foundation and make sure to put “Kayla Woodhouse” or “The Woodhouse Family” in the memo section of your check.

A Gift Of Pain Inc.
23080 162nd Street
Elk River, MN 55330

Several years ago, when Kayla was four or five years old, a family friend suggested that Kayla would be the perfect Olympic swimmer. Swimming is the one activity Kayla can do because it keeps her body temperature down so she can move and exert energy and her body does not overheat. Kayla loves to swim! It’s an activity that she sees as something she can be good at and her dream is to become an Olympic athlete. Generous people have donated a couple of months of a membership to the local YMCA so Kayla can swim. Her ultimate dream is to one day have her very own swimming pool so she can play outside like other kids and do her favorite thing… swim!!

2.This very special family needs a home. They are looking for an affordable place with space in the Colorado Springs area. Because of Kayla being housebound, open space to do school projects and adequate space to play would be an added bonus in their search for a home. Air conditioning is a must to adequately manage heat and humidity levels in the house. Several people have suggested the Meridian Ranch/Woodmen Hills area because there are indoor pools for the family to use, but, it is very expensive – and the family cannot afford it.

The Woodhouse Family: Jeremy, Kim, Joshua, Kayla

THE VEST

The fluid inside the vest was developed by NASA for those doing space walks. Sarah Moody was the one who pushed to have them designed and developed for kids with HED (Hypo-Hydrotic Ectodermal Displasia; a disorder in which children are born without sweat glands.) The vests used to be 65 degrees and now are about 57-58 degrees. They are now provided through the Heat Relief Depot and used to range in cost from $500 to thousands of dollars. Thankfully, they are much more affordable now.

In the past parents would pack their kids in ice to keep their body temperatures down. The ice would burn their skin. The vest provides these children a life and a way to have a sense of normalcy. For Kayla, it allowed her to see and experience the outside world. During cool months she has spent time at Disney World, air-conditioned Children’s Museums, air-conditioned aquariums, the Seattle Space Needle, and she rode a carousel…twice!

The Sarah Moody Foundation had taken care of all of the equipment and expenses associated with Kayla’s vests. They need to be replaced as they grow. She is now on her sixth vest and sadly, the Sarah Moody Foundation has shut down. Gift of Pain is now helping the Woodhouse family and others like them. www.gift-of-pain.org

Kayla Woodhouse (right) in her vest with good friend Erin

Kayla and her brother Josh. A recent trip to Disney World was donated to the Woodhouse family. It was a highlight of Kayla’s life.

Kayla cooking at home.

Kayla loves to swim and dreams of one day being in the Olympics!

Front page May 20 Gazette

It's not so easy being a superhero

Gazette, The (Colorado Springs), May 20, 2006 by ANDREA BROWN THE GAZETTE

This 9-year-old girl can touch hot burners and chew glass. She can walk barefoot in snow.

She has a rare neurological disorder that lowers her sensitivity to pain and cold.

A Colorado summer day could kill her.

Kayla Woodhouse's body lacks the ability to regulate temperature. Cooling functions -- sweating -- don't kick in until her body reaches a lethal high temperature. Her skin is overly dry.

She wears a special vest with NASAsigned cold packs. She can only go outside to play after sundown. The house thermostat must stay below 62 degrees.

Kayla has incurable hereditary sensory autonomic neuropathy.

"Nationwide, there are a handful of cases, at best," said her pediatrician, Dr. Margot Crossley.

The disorder has taken Kayla's parents, Kim and Jeremy, far from their sultry Louisiana roots.

Kayla wasn't diagnosed until she was 14 months old, after passing out on a rare trip to a playground. Her mom said the reason it took that long was a godsend.

"I had postpartum depression and never went anywhere except to church," she said. "The doctors said if I had gotten her out, she would have died."

To save Kayla, they first moved the family, which includes Josh, 11, to Alaska.

There, the biggest worry was Kayla running outside in 15-below without shoes, but the state also proved too far from medical centers.

A year ago, the family moved to Colorado Springs for the mild climate.

The tall, blonde Kayla looks healthy.

She jumps around the living room, clutching an oversized teddy bear. She has lots of energy but limited places to go.

"I might want an indoor playground," she said.

She rides her bike after sunset.

Swimming is her only sport, and it's good for keeping her body temperature in check. But she's limited to private, indoor pools.

She plays with her brother, who knows better than to fight with her.

"If I pinch her, it doesn't hurt," he said. "She pinches back -- hard."

Through the back patio door, she watches her two puppies grow up.

Church is the only time she's around other kids, but she's always under the watchful eye of Mom.

"She'll be playing and doesn't want to stop. She pushes herself too hard," Kim Woodhouse said.

Kayla likes to cook and sew. Even these can be hazardous.

"She'll start to reach into the oven without a mitt," her mom said.

Her first sewing lesson a few years ago was a disaster: Kayla sliced her stomach with scissors
and didn't realize it until blood was spilling everywhere.

"She doesn't feel pain until it's 20 to 30 times the normal intensity," Kim Woodhouse said.

"You realize what an asset it is to feel pain."

Still, it's better than when Kayla was a fearless toddler.

She chomped on Christmas lights. She'd slam into walls.

"She was a daredevil and would dive off of things," her mom said. "We had to duct tape socks to her hands so she wouldn't scratch too hard."

The eczema remains a problem. Kayla digs at the sores in her sleep.

She doesn't dwell on her condition. When her dad talks about the good fishing in Alaska, Kayla reminisces with him.

"Now we worry about the heat issue, making sure she stays cool enough," her mom said. "What's normal to us is not normal to other people."

They carry spray fans. They pack a cooler with ice packs for Kayla's special vest and drinks to keep her hydrated.

The air-conditioning stays on year-round.

"Our house is freezing. Our friends leave sweat shirts here," Kim Woodhouse said.

CONTACT THE WRITER: 636-0253 or andrea.brown@gazette.com

Copyright 2006

Provided by ProQuest Information and Learning Company. All rights Reserved.