Dear Friends,

My 36th birthday is Tuesday, March 30th. This year, I am celebrating in grand style rejoicing in the improving health of our Joseph. Here is our latest update:

Thank you so much for your prayers and encouragement of our family this season. We have officially passed the halfway mark of our time in Denver and are beginning to think through preparations for our return to Orlando. Here is an update on the last leg of our journey.

Get out your Kleenex…

Joseph is thriving. It’s like we have a new child in our home. I don’t know any other way to say it, but each day we see more and more of who God made him to be. Probably the most enjoyable part for us is that he cracks well-timed jokes with a precious little grin on his face. His abdominal pain is gone. He doesn’t have bowel issues anymore unless he is exposed to gluten (Mom’s fault twice). He’s gained weight for the first time in over a year. He’s continued to grow taller. He is on the lowest possible dose of asthma medicine.

The Celiac Disease experiment turned out to be very fruitful. With our lead doctor’s blessing, we chose to omit the small intestine biopsy and remove gluten from his diet (no easy feat, we assure you). We began in January and almost immediately saw relief from his abdominal pain and bowel issues. We are still addressing his GERD symptoms, but we have been encouraged by our nutritionist that there is a huge chance that those will cease eventually. His asthma has continued to be much less severe here in Denver. We are hopeful that as his immune system continues to heal (CD is an auto-immune disease) that he will grow stronger and healthier. We met with the top endocrinologist at Children’s Hospital, and he said that Joseph absolutely does not need to be on growth hormones. Our weeks ahead include more testing to ascertain his overall lung function at this juncture, 2 trips to the nutritionist, a gastroenterologist, our endocrinologist and our last few visits with our lead doctor. We are still uncertain exactly how much his asthma is impacted by his Celiac Disease or if they are separate issues altogether.

There are a few questions that many of you have asked:

1. What happens if Joseph eats gluten?

He has an immediate and violent bowel reaction + abdominal pain. Gluten hides in the most unlikely places (i.e. Powerade as we learned the hard way at the top of a mountain a few weeks ago. It wasn’t pretty, but he handled it with such humor and courage that I wanted to weep, giggle at his jokes, and worship God simultaneously).

2.  What about our other family members?

We are all eating gluten-free at this point as it is frankly just easier than doing it the other way. Because Rich’s Dad has the same gluten-issues and CD doesn’t always present as dramatically as it has in Joseph, we will eventually explore David and Rich’s situations. Right now, they are being INCREDIBLY good sports and are eating G-free and donning the same supplements as Joseph.

3. FUTURE?  What about our geographic future?  

Our lead doctor said last week that she believes that we will know within 3 months of returning to Orlando if Joseph will be o.k. in the Florida humidity long-term. This is definitely the hardest part of journey right now for us. We have always wanted to be in Colorado long-term. We love our friends here and have made new friends, too, who have become very special in a short time; however, being here has showed us how much we LOVE/ADORE/MISS our roots in Orlando with our ministry teams, our home, our church, and the friends that God has given us. Feeling up in the air about the permanence of our return is unsettling. We are thankful that we work for such an incredible organization that is willing to allow us to serve from here as it has completely changed our lives. We are trusting that God will continue to lead and provide in this part of the story.

Please don’t stop praying. We have miles to go before we sleep, but we are definitely celebrating at this leg of the race!

With Love and Thankful Hearts,

Kourtney + the boys

“It is not enough to put your heart and soul into something. The really important things require much more than that.”

Dear Friends,

We wanted to give you an update on Joseph. Last Tuesday morning was our most recent appointment. We are more encouraged than we have ever been about his health. We LOVE our team at National Jewish. Our primary doctor is from Germany, and our secondary doc is from China. Our nurse is a kind, older American woman. What are the odds were that God would give us German woman and Chinese man at a Jewish hospital to help us find answers for Joseph? We  love their countries and love that they are helping us.

Here’s the summary. I would happy to provide more details if you have further questions.

LUNGS:

1. His lung function numbers have improved since we arrived. He was first tested on November 17th. Fully medicated, he is breathing within normal ranges. They cut his medication in half as of Tuesday night to see how he does.
2. His next asthma appointment is March 9^th.  They are going to test him with and without medication.
3. They are going to do a test in March that will test his overall lung health.  They will irritate his lungs and see how he responds.  The test that they did on Tuesday and in November is a very detailed measure of the amount of air that he can blow out.

GROWTH:

4. He has grown 1.5 cm since we arrived. (We are saying 1 cm to be conservative, but they use a very high tech device to measure him, and it showed 1.5 cm)

GASTROENTEROLOGY:

5. It looks there is a high possibility that he has am auto immune disease called Celiac Disease.  This would explain his growth issues, GERD, tingling extremities, irritability, stomach pain, etc…Rich’s father has dealt with similar issues throughout his life and recently began a gluten-free diet. He has been pain-free abdominally for the first time in his life.
6. The reason we haven’t seriously considered this before is that CD is the #1 under-diagnosed genetic condition in the US. It takes the average person 9-11 years to get diagnosed. 10-30% of folks with CD have really overt symptoms that are blatantly life-threatening, but the majority live below the water line–living with chronic, but seemingly manageable issues, or slowly deteriorating and eventually having severe issues.
7. The gold standard test for Celiac Disease is a biopsy of the small intestine.  Since Joseph has had so many procedures and this one would again require general anesthetic, we agreed with the doctors that we would remove gluten from his diet to see if his symptoms improve.  Because there is a significantly greater chance of having Celiac Disease if you have a family member with it and symptoms are often silent, it is also possible that Rich, Rich, and David could have it.  So, as of yesterday, our entire family has embarked on a G-free diet (Gluten-free). This is not for the faint-hearted, but since we are used to reading labels for milk ingredients, we aren’t totally freaking out by the learning curve.
8. The great news about CD is that removing gluten from the diet is the only treatment that there is. Once gluten is removed, the small intestine begins to repair itself and body starts absorbing nutrients again. In children it can take as little as 3-6 months to see a remarkable difference. I read one author who said that most people with a life-threatening illness would be thrilled for the doctor to tell them that the only thing that they need to do is to remove one ingredient, albeit an ingredient that is extremely prevalent, and their body would heal. This has deeply encouraged me and shaped my attitude about this potential blessing. We would honestly be so thankful if he has Celiac Disease as this would explain SO many things and hopefully prevent the need for growth hormone therapy.

FUTURE:

9. We have an appointment with a Gastroenterologist at the end of February (1^st available appointment at Children’s Hospital)
10. We have our next appointment at National Jewish on March 9^th.
11. We have an appointment for a second opinion with the Endocrinologist on March 24^th.
12. The six month plan from our doctor is that she would like to figure out for sure if he has Celiac Disease and if not, what is going on with his GI system, get his lungs in the best shape possible, and make a final decision on whether or not he needs growth hormone therapy. Then she would like for us to return to Orlando and see how he does in the fall with his breathing. Obviously, it looks like he is thriving here lung-wise and it very much points to the humidity in terms of his asthma. However, her hope (and ours) is that by addressing the other issues, it would improve his asthma, and he would be able to live in Orlando, Denver, or wherever God might take him in the future.

We are greatly rejoicing. I wept on Tuesday night as I was shopping for Gluten-free food in Whole Foods and getting Joseph’s lower-dose Asthma medication at Walgreens. I feel like we have been fighting for our little guy for so long, and now we have tracks to run on. Thank you for walking through this season with us. David and Rich are doing really well. All three boys start basketball tomorrow morning and will be Jr. Nuggets through the local YMCA. I am sure that Rich’s Facebook page will be flooded with proud daddy pics by noon!

 Blessings,

 Kourtney

Since I write our families’ monthly newsletter, I love reading Christmas letters in December.  Here’s my favorite for 2009:

The Zserdin’s list of things broken, destroyed, or used in a
manner not originally intended. 2009 Edition

1 Pair of eyebrows – Zach shaved his off in April.

1 Pan of cooked potatoes- Found later in the boys’ dresser drawer.

1 Road bike – Mike had a wreck during a race. He wants to make sure you know it wasn’t his fault.

1 Front porch post – Tracy backed into it coming out of the garage.

1 Large recycle dumpster – Zach used it as a clubhouse during a music recital after excusing himself for a bathroom break.
1 Office rug – Lit on fire during a birthday party/tissue paper debacle.
Bedtime – We wrote a note giving bedtime instructions to the sitter. They counterfeit the original note changing bedtime from 8pm to 10pm (This one is my favorite).
1 Old, beloved friend – Walking into the playroom one day, this is how I (Tracy) found my Grover doll. I asked Jake what the story was. He looked at me sideways and chuckled a malicious reply: “He, he, he…the death chamber.”

Best Quotes

Zach: “Mom, can I mow the lawn? The tractor and I need some alone time.”

Jake: “Mom, is today the day I can clean your tub?” Tracy: “Yes Jake, today is that day.”

While listening to a song on the radio that said, “He rose, say it’s Jesus” Zach asked, “Did that song just say: stinky cheese breath?”

Mike asked Jakey why he likes GoFrett, his favorite cartoon character, so much. He said, “Because he is such a great actor.”

Recently, Mike had a barista tell him that he could be William Shatner’s son. Earlier in the year another one told him he looks like Kevin Spacey. Apparently he spends too
much time at Starbucks. Or, they are milking him for better tips. Mike was uninspired by William Shatner, and didn’t know who Kevin Spacey was. They didn’t help their cause.

God obviously knew what he was doing when he put our crazy bunch together.
Praying that God will meet you right where you are this holiday season. He isn’t afraid.

Love,
Mike, Tracy, Zach & Jake

A few weeks ago, we met with our doctor at National Jewish for the first time. She is a kind, thorough, German woman who clearly knows her stuff. As we dove deeper into Joseph’s medical history, she looked up at me at one point and very gently but seriously said, “I think that your son has probably been in pain his whole life.” It felt like a blow to the gut, but in the midst of moving in and caring for our family, I haven’t truly processed what she said. I tucked her words away, but today, like a tidal wave, they rose to the surface.

After reading the story of Susannah Baker, another mom with a child struggling with health issues, I’ve let myself go there for the first time…Remembering the early years with Joseph when he was often inconsolable…Remembering how hard it was to figure out what was going on and clearly being so far off from what was really the issue. Remembering the unkind words of well-meaning but also clueless people who encouraged us to spank him and to let him “cry it out”. Remembering the nights I slept close to make sure that he was breathing well…Remembering the moments of utter frustration when nothing that I did would sooth him or meet his needs…Remembering the sweet respites when he was pain and medicine free, and we saw bigger glimpses of who he really is…Remembering the dashed hope when we had to return to higher doses of medication that wasn’t even doing what he needed…

I clearly haven’t made much progress in my processing. The truth is that this post is my maiden voyage. But I am inspired by the words that I read last night by Sue Monk Kidd

“When we share our inner stories, we allow others to enter our lives and partake of our deepest truths. We discover that we share the same joys and tragedies, the same ambiguities and struggles…For who has not come upon a season when the water of the soul is disturbed? And does not God meet each of us as we brave the swirling dark in search of wholeness. God, the sublime storyteller, calls us into the passion of telling our tale. But creating personal spiritual stories is an act of soul-making that does not happen automatically. It comes only as we risk stepping into the chaos of our lives and naming the angels that inhabit the shadows. It comes as we give expression to our struggle for individual meaning, identity, and truth, as we wrestle with angels, both light and dark, and celebrate the places where God stirs. In the crucible of story we become artists of meaning. There we meet God most surely.”

Thank you Susanna Baker for sharing your story. I have no idea who you are or where you and Lillian live, but I thank God for you tonight.

We took our eldest daughter, Lillian, to the doctor today.  Lillian is only 3 ½ years old, yet in her short, three years of life, she has been in her fair share of doctors’ offices.  Thankfully, she has never had any sort of life-threatening illness, but the Lord seems to use medical ailments in her life to draw her to Himself and to continually remind my husband and me that Lillian does not belong to us, but to Him. 
 
So today’s visit was no different.  In one way, it was routine.  I knew what to pack in the medium-sized canvas bag I always take to Lillian’s doctor visits.  It had its fair share of pictures for her to color, books for us to read, and snacks for us to share during the invariable wait that lay ahead.  And, as always, Lillian was a champ.  She was polite and cooperative with the doctor, made each of the nurses smile, and left with a lollipop in one hand and her daddy’s hand in the other.
 
Yet the diagnosis was different.  In the past, we have received news about Lillian concerning her lungs, her heart, and her brain.  Today the diagnosis concerned her hearing.  Off and on, for the past several months, my husband and I have wondered if Lillian’s hearing was impaired or if it was only a chronic case of three-year-old “selective hearing.”  But the doctor confirmed that Lillian has fluid build-up in her inner-ear, which causes her to hear the world around her as if two fingers were stuffed into each side of her head.  She doesn’t hear soft sounds, and at times it is difficult for her to hear loud sounds.  And what we, in the past, have thought was just an ability unique to her personality to focus well on the task at hand could very well be a by-product of her inability to hear.  She has learned to shut off the world without and retreat within, to a place she can hear.
 
Thankfully, Lillian’s hearing problem is easily fixed.  With minor surgery, the doctor will drain the fluid, place tubes in her ears, and remove her adenoids (part of the lymph node system), and Lillian’s hearing should be as good as new in no time.
 
Yet as I pulled home into the driveway, unloaded the canvas bag, and tucked Lillian into her bed for her nap, I felt an ache tugging at the edges of my thankfulness.  I remembered the countless times she asked me, “Mommy, please turn the music up,” and my saying, “No, Lillian, you can hear the music; it is loud enough.” I recalled my frustration at having to repeat directions four or five times, the last time with impatience in my tone and frustration in my eyes.  And I could hear myself calling her name for the tenth time when her back was turned to me, inevitably ending in me saying in a rising tone, “Lillian!  LISTEN to me!” when all the time she could not hear what I was saying. 
 
I remembered all of these things, and the ache in my heart made its way to tears in my eyes as I reflected upon all the ways my Heavenly Father has responded to the deafness in my heart through the years.  He never shows frustration and impatience when I do not listen. He does not shout at me, or turn away from me, or give up on me.  He stands at the door and gently knocks until I can hear. And when the hurt or pain of life or the sorrow and consequences of sin have deafened my ears to His Voice, He calls my name in love until I respond once again.
 
My only response was, and is, “Thank You.  Thank You for being the Parent who always loves, always protects, always hopes, always forgives, always patiently understands.  Forgive me for all of the ways I have hurt Lillian and You because I have not been willing to follow Your example.”
 
So I am thankful. Thankful for doctors who are willing to use their God-given knowledge and skills to heal.  Thankful for easy access to the Medical Center and for the vast array of doctors and specialists there.  I am thankful for a child who sweetly responds to all of the ways God has chosen to draw her to Himself.  I am thankful for my husband who never misses an appointment and never fails to first  fall to his knees, and then to comfort, console, and yet be an immovable rock all at the same time.  And I am thankful for my God who loves my child enough to place His mark and His Hand upon her.  For my God who is faithful to remind us that Lillian is His, not ours.  And for my God who patiently and lovingly parents me, even when, and especially when, I cannot hear.
 

“Bless the Lord, O my soul, and all that is within me, bless his holy name! Bless the Lord, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy, who satisfies you with good so that your youth is renewed like the eagle’s.”  Psalm 103:1-5