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Happy Father's Day 
"For I know the plans I have for you," declares the Lord. "Plans to prosper you and not to harm you, plans to give you a hope and a future."
Jeremiah 29:11
Click here to read our Journal
Welcome to our The Kocourek Family Web Page. It has been provided to keep people updated about our special daughters. (pictured Annalies and Kristen)
Annalies and Kristen have a Primary Mitochondrial disease and consequently, many secondary problems to deal with.
Quote from UMDF: "Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems."
Kristen also has a diagnosis of Congenital Central Hypoventilation Syndrome (CCHS). CCHS CCHS, Congenital Central Hypoventilation Syndrome, is a disorder of the central nervous system in which the autonomic control of breathing is absent or impaired. A CCHS child's respiratory response to low blood oxygen saturation (hypoxia) or to CO2 retention (hypercapnia) is typically sluggish during awake hours and absent (to varying degrees) during sleep and serious illness or stress.
While most CCHS children breath adequately, though shallowly, while awake, they do require observation for their respiratory status, and, they require mechanical ventilation for sleep or illness. Yet while the health issues initially appear daunting, with appropriate home care, family support, and careful medical supervision, these children can lead fulfilling and productive, near-normal lives.
God has blessed us richly not only with our thriving children but also with precious supportive friends and family like you! Thank you for your interest in our journey.
Our lives revolve around the care of our children. We currently need your help to pay for the expensive mitochondrial disease cocktail supplements, uncovered medical expenses, travel for medical care and equipment for Annalies and Kristen. Currently those expenses are NOT covered by our insurance or Medicaid.
We don't want to be competing with other families for donations, but there are so many kids who need help. What does that say about our society? Evidently, there isn't enough assistance to provide what families actually need during a medical crisis. Anyway, we find ourselves in a position where we need many people offer or volunteering to help us.
In thinking about tragedy and sadness, I am thankful to say; in those places is also compassion and love. I think compassion is one of human's greatest gifts. It can spread like wild fire and affect everyone it touches. I'm thankful because this website has shown me the compassion living in everyday circumstances and in ordinary people. I really do treasure it. We really appreciate any help you can give for our girls with the overwhelming medical bills.
A fund has been set up to assist our family. For information regarding ways you might assist our family, please contact us by email. Thank you.
Happy mail welcomed: The Kocourek Family PO Box 753 Worth, IL 60482
Journal
Wednesday, June 17, 2009 12:55 AM CDT In honor of Fathers Evangelist Billy Graham said, "A good father is one of the most unsung, upraised, unnoticed, and yet one of the most valuable assets in our society." On Father's Day, remember to honor your dad. Make sure he knows his worth has not been overlooked. Happy Father's Day to all the wonderful dads out there with an especially Happy Day to those parenting challenged children that need a little (or a lot) extra from you. I pray that today is a time of refreshment for you and you are able to see the blessings your children bring. How privileged are those that God chose and entrusted to give special children to! Be blessed!!
"Many of us have roadmaps we envision for the courses we think our lives should take. It's important to get headed in the right direction, but don't get so caught up in the concerns over your destination that you forget to delight in the scenery of each new day. Remember that some of the secret joys of living are not found by rushing from point A to point B, but by inventing some imaginary letters along the way." ~ Alin Austin
Our family has been and will be doing significant traveling this month and next. Last week we drove from Illinois to Double H Ranch in Lake Luzerne, NY with stops in Erie, Pennsylvania and Niagara Falls. Next week we will be traveling to Vienna, Virginia (and Washington D.C. for the UMDF Symposium and the week after, to Cincinnati Ohio for our nephew’s wedding. Have you ever been late driving to a certain address because you got lost? That’s because we already think we know the way. Out of pride we think we know the way to almost anywhere and we’ll never get lost. We don’t want to even admit we are lost, let alone buy a map. But what happens? We end up wasting so much time and gas just searching for the address that we end up arriving at our destination late and usually feeling frustrated because of it. While driving last week we encountered S-curves, dead-end roads, treacherous areas with steep drop-offs and falling rocks along high-speed interstates with reckless drivers and lacking or questionable signage. Thoughtful travelers would never think of leaving home without a first-rate road map to help them avoid danger and arrive safely at their destinations. Road maps are crucial when we are traveling to new places because they guide us flawlessly to our destination. Road maps show us the right way to go so we don’t waste precious time and get lost. This trip we learned that an accurate roadmap remains essential even with the availability of GPS.
When we renewed our cell phone contract last spring, we added a GPS feature for our road travels. There is some measure of comfort about having the GPS available to tell us where we are, where we’re going and how long it will take to get there. At least, we lived under the perception that it was comforting until the GPS led us astray. For the first couple of months the system performed flawlessly. But then it began to show that maybe we couldn’t trust it implicitly. Given the distance we had to drive, we decided to set the GPS and let it take us there. It got us close, but not there. “Turn right” it said, and I did. And as I did that it said, “Arriving at destination.” We looked around and saw that we were on a dead end country road. In fact, the road we were supposed to arrive at was not visible. Several other times, the GPS said we weren’t on the highway, but we were! Yet the GPS stubbornly insisted that we were where we were supposed to be. Its job accomplished. Eventually drove around and found the road we needed and/or the system recalculated and determined we were on the correct highway and not in a farm field. While I will grant that the little device is right far more often than it is wrong, it has been wrong enough times now that it has us second-guessing its directions. And if a GPS can’t get us to the right place, what possible purpose does it serve (other than telling us where we are, something we knew anyway)?
Those who have followed our family “journey” know that we have had, and continue to have many challenges and changes in the “direction” or “course” the disease process or treatment options have taken us. Our “journey” or road trip has always so much more pleasant when we have tools for our trip - you know, the map, the compass (for people like our son without a sense of direction) - or better yet, a functional GPS! And, as with any tools, knowing that they are actually accurate and up-to-date relieves most of you anxiety about the journey. Call me crazy, but, I think, at times, there has been something terrific about choosing “less traveled roads” in our unique journey. Not only have we ultimately found things that others may have missed, but, there have been many blessings while choosing the right path - the harder path - the path that is “less traveled”. The road less traveled is not the path for everyone. .We didn’t have a choice in our situation (still don’t). The best roads that aren't traveled are really those long windy roads, where you never know what's around the next corner. Learning to expect the unexpected, and trust God not only makes the journey more excited, but, also builds faith. Remember, especially when on the long, windy road of your journey - things are not always as they seem. Throughout our travels we have met and continue to work with a number of brilliant physicians and established a number of true, supportive friendships. We have also visited many parts of the US and world based on the medical needs at a specific time. That has to be a positive!
Sometimes, we find the curve in the road takes us dangerously close the edge....where we cling to the road and pray we don't fall off the cliff. But, somewhere in that prayer - we find some of the most beautiful things. Every good road trip requires that we stop and really enjoy the scenery that God has provided us along our journey - and, those long, windy roads provide the best scenery around!
Medically our journey is in a state of flux. Both girls have clinic appointments is Milwaukee in July and August. The surgery proposed by gynecology still has NOT been rescheduled. While assembling and reviewing consult notes and lab reports required for the annual renewal for Annalies and Kristen’s home care waivers (their link to Medicaid in IL), I identified a number of abnormalities or recommendations that had not been addressed or acted upon (arranged for recommended consultations, initiation of treatment for lab abnormalities, etc). One of my big frustrations over time is the failure of a number of clinics and physicians to communicate abnormalities and failure to follow through with the recommendations of the subspecialists. On rare occasions, it is because the recommendation was NOT in the girls’ best interest, but it would still be nice to know what was suggested and why an alternative decision was made. Otherwise, when we return to clinic it gives the appearance that we have not been compliant when we haven’t been. Annalies is finally recovering for her hip surgery and has been released by PT. She does find the weather changes cause joint and bone pain and says she now knows how “mom feels”. I am finally recovering from the residual affects of pneumonia and a sinus infection. It is amazing how significantly each infection causes flares of lupus and asthma. Tom also feels he is close to being over a similar respiratory infection.
Our week at Camp Inspiration (family ventilator camp) at Double H Ranch was everything the girls hoped it would be and more. Kristen wrote and directed a “Crimes of Fashion” movie for her talent. Annalies and Kristen’s love of art and crafts allowed for hours of creativity. Kristen’s counselors were both assigned to the Art and Craft building and offered lots of projects to pick from. They also each won several games and selected items for their future niece or nephew. I think Josh and Dawn will be pleased.
It’s so difficult to explain to people about Camp. I always end up using the word magical. From the moment we arrived we felt this wonderful positive energy. I could see a change in our daughter almost immediately. Camp is a safe place, a place where love is unconditional; where no matter what illness you have its o.k. And you know you’re not the only one. It’s fun and happy and silly and joyful. And when you leave, you take some of that with you and it helps you get by. A week has passed and it is as if Annalies and Kristen have been given a transfusion of that positive energy. The physicians, nurses, Respiratory Therapists, counselors and staff help with all aspects of both fun and personal care. Our daughters are strong young women and they would have found ways to deal with their multitude of medical challenges. But there is no doubt in my mind that their experiences at Double H Ranch help them tremendously in this journey; by nurturing their inner strength, bringing them countless moments of joy and helping them to see that there are blessings in everything that happens in our lives.
Double H Ranch is an amazing place…a bit of heaven on earth where barriers simply do not exist. It means so much to have a place where our children can be just that, children who can laugh, enjoy the beauty around them, and just be. The staff is great, the medical attention was assuring and the organization was far beyond what I had ever hoped for! There are so many things about camp that I wish I could share, but the feeling I get when I think about camp is indescribable, the whole experience has been incredible.
Stephanie, Brooklyn’s puppy raiser, spent one day with us at Niagara Falls. It is such a joy to spend time with Stephanie and to watch Brooklyn and Stephanie together. We had a lovely stroll through the Falls Park and enjoyed lunch together at Hard Rock Café. Stephanie is one of the rare gems you find and treasure forever. While at camp we had the opportunity to reestablish friendships from two years ago and to make friendships with families new to vent camp. We can learn so much from others who are walking similar journeys.
Next week we will fly to Baltimore and travel to Vienna VA and Washington DC. The UMDF Symposium will also allow the girls and us to spend time with friends, new and old. There will be a number of older teens and young adults present this year so the girls are looking forward to this trip. We plan to spend a day sightseeing as a family. Kristen wants to visit the Spy Museum and explore the world of mystery and intrigue.
As travelers on the road of life we need a second map to help us on their way. God-the Creator of life-has given us just such an awesome guide. It's called the Bible, God’s road map for life. The book filled with wisdom and inspiration from God's Word to give us real guidance on eighty relevant topics such as ambition, challenges, fear, forgiveness, grief, peace, prayer, and relationships. Stories, devotional reflections, heartfelt prayers, and encouraging letters from God are also included to help us navigate life and reach our destination safely. This has become a "can't-do-without" accessory as we strive to travel life's highway with the success and joy our Maker intended. In today’s busy world, it’s easy to get off course. Having a road map for life to refer to helps us keep moving quickly and efficiently towards our goals. It helps to filter out things that don’t belong, helps one quickly make corrections when we mess up, and helps navigate unexpected problems.
I was thinking about this on the long drive home from New York and realized that since we got the GPS, I have gotten lost more often than when I handled the directions on my own. Here’s the reason. I used to be responsible for getting myself where I wanted to go. Previously, when I went somewhere new, I would go to www RandMcnally.com, print out a map of the area, with turn-by-turn directions. When I did all of this research, I typically got exactly where I needed to be without any real trouble. But recently my preparation is as simple as looking up the address and punching it in. I let the GPS handle the rest. It is easy and even comforting perhaps, to rely on that simple and automatic guidance. But it is far better, I am sure, that we continue to do some of the work for ourselves. What about our future travels? Well, I still use the GPS but I’m remembering that I need to supplement it with my own research. Too often it has told me which way to go, only to find that I don’t know where I am or where I’ve been. It’s great for what it is, but I can’t let myself trust it implicitly.
Sometimes, when we are enjoying the scenery so much, we forget to watch the road, we end up wondering how we got stuck between a rock and a hard place. But, really, none of the journey is that bad if we have our friends along - and help a few strangers on the way (which, interestingly, makes them friends too!) There's nothing like a great reminder that we are all on this journey together - no matter where we are at on the journey, to keep us focused on helping each other get through it! Our friends and the "strangers" we meet can show us the way - whether directly or indirectly - and generally make the journey much more enjoyable and easy to manage. We remain thankful for, and continue to pray for, each of you who lighten our journey and provide guidance and support along the way.
None of us want to think about it really - but, every good road trip, every good journey, must eventually come to an end. That destination may be one of grand splendor, or may be one that is not where you expected to end up - but, every journey must come to an end. May all of us end in the most beautiful of places with the Most High.
Read Journal History
Hospital Information: Children's Hospital of Wisconsin
Currently HOME
PO Box 753 Worth, IL 60482
Links: http://www.umdf.org Mitochondrial disease Foundation
http://www.cchsnetwork.org CCHS Family Network
http://www.ecad1.org Service Dogs
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