The FIVE J's

Friday, March 07, 2008

Rambling - Mercedes, Guild Gala, Constant Congestion

Again, many thanks to those of you who gave to the marathon a few weeks ago. We had two teams running for Jonathan and you raised almost $18,000 for the Bell Center! We won the fundraising contest!!!

Jamie and I went to Colorado two weeks ago. We kept the boys out of church and school the whole week previous to insure we had done everything within our power to keep them well. They remained healthy while we were gone.

The flu and stomach bug have been running rampant all over the nation and it is no different here. On Tuesday of last week I commented to a friend that we had avoided the flu and stomach bug successfully thus far. That night Jonathan woke up vomiting. I wished that I had never uttered those words. Thursday rolled around and my stomach hurt but I didn't think much of it. Jamie started feeling poorly Thursday night, hurt all day Friday but worked anyway, and then I was out of it Saturday. Saturday was the night of the Guild Gala, the other annual fundraiser for the Bell Center. It is a ball where everyone either dines at the Birmingham Country Club or in someone's home who is hosting a theme dinner. Everyone convenes at the club for dessert, music, and an auction. We missed getting all gussied up.:) Hopefully we will make it next year and I will remember to keep my mouth closed.

This doesn't seem related but just wait...

Jonathan has had constant congestion for as long as I remember - it seems since he had heart surgery. It is probably not that long but I have quit taking him to the doctor for it. Everytime I go, the pediatrician, allergist, or ENT tells me his congestion will pass and that it is not deep. Occasionally, if fever accompanies it, it registers as an infection, and antibiotics are prescribed. The congestion supposedly will clear up by the time he is three years old - when his anatomy develops more and doesn't clog so easily.

After months of Jonathan waking at 5am, coughing for a couple of hours unless sitting vertically, I had the idea that perhaps a trip to the pulmonologist was in order. I consulted with the pediatrician, who agreed. At this point, we had tried inhalers in case the congestion was linked to asthma, allergy testing, reflux meds, and antibiotics. So, we visited the pulmonologist about two weeks ago. He immediately suggested Jonathan do a sleep apnea study - Jonathan's oxygen levels were not optimal. The doctor wanted to do the study to determine if he indeed had sleep apnea and to see if his oxygen saturation levels (sats) changed at night. The conclusion was that Jonathan did not have sleep apnea and his oxygen levels actually both increased and decreased at night.

The next step was to take antibiotics for a week to see if that healed up the congestion. If it did, the doctor thought perhaps that would indicate infected adenoids. If it did not work, his heart might not be working properly. We also were slated to do a modified barium swallow. At the next visit, Jonathan would eat things with barium in them while a moving x-ray showed if he aspirated while he ate.

Jonathan took the antibiotics and readied for the next appointment. However, the vomit episode occurred the early morning of the visit so we had to reschedule. With the antibiotics in his system, the congestion ceased. We arrived today for the appointment and barium swallow. Jonathan was not supposed to eat two hours before his test. I had brought along food for Jonathan in the event he did not eat what they offered him. He spied the food and begged for it. I had been thinking and obsessing about this testing all week and oddly enough, totally forgot he could not eat. I finally let him have a snack and then almost lost it - what was I doing?! We had labored so hard to get the timing right and here I was letting him eat! I was upset because I thought we would have to reschedule again and I had been praying for his health all week to remain good despite his exposure to other kids. Oh, I didn't want to have to come back...

I found comfort in the fact that we were in the waiting room with Jesus and Enoch. A mother kept saying, "Jesus! Come here! Enoch, don't do that! Jesus, put that down!" It was comical! I was glad Jackson was not with us - he definitely would have had questions. We have gone to so many doctor appointments now that I wonder if Jackson may go to medical school. After becoming bored with me and Jonathan at these visits, Jackson begins inspecting all the equipment in the room and asks me to tell him about all the charts on the walls, pretending to understand exactly what I am saying.

I felt overwhelmed today with trying to coordinate the appointments, making certain we checked this one off our list so we could rule out Jonathan's lungs, and trying to shield Jackson from it all by getting him a babysitter. Then I realized, as I mentally complained, that we are fortunate to be close to a wonderful medical facility. As I see the other patients and their parents, I am grateful for our situation.

What is neat for me personally, is that I don't feel like a victim and don't see Jonathan as one anymore. He drives me nuts with his antics but I am thrilled he is moving, curious, and expressing himself. I tire of the incessant doctor appointments simply because I long for Jonathan to enjoy good health. I do not resent the DS - in fact, selfishly, I would not trade it. Having Jonathan's diagnosis in my life has made my relationship with Jesus real and not academic. I am living my faith rather than simply studying it.

Back to today's doctor's visit... The conclusions were that if Jonathan encounters more respiratory problems, he should take antibiotics more quickly to combat them instead of waiting a week or two. The doctor explained that kids with DS have weaker immune systems and are more susceptible to respiratory illness. This appears to be Jonathan's issue. The OT who administered the barium swallow told me that she did not see any aspiration or reason to believe his eating was causing problems. Good to know.

That, in an unorganized fashion, has been the last few weeks of our existence. Thanks for letting me share!

Julie
juliewarren@mindspring.com

Thursday, March 06, 2008

MM Total, Valentines' Day, Sleep Study, Skiing

Josh, Joseph, and Jess all ran on the Warren Averett team, averaging seven-
minute miles, coming in second overall as a relay team, the first Bell Center relay
team. Overall, we raised over $17,000 and we won first place in the Bell Center
fundraiser!

Jackson and his friend, Natalie, at their Valentines' Day party. Jackson told me he
will be marrying Natalie soon.:)

Jackson decided to wash dishes for us one evening.

Jonathan went to see the pulmonologist a few weeks ago to
get some advice on a constant cough. The first step was to
rule out sleep apnea.
Jonathan got wrapped up like a mummy!

This was reminiscent of the heart surgery.

Jamie and I went to Breckenridge to ski a few weeks ago. No kids!

Our instructor, Ruxie. She was from Romania and very patient.

Jamie and I on the mountain.

Me and Jamie.

Stopping for lunch.

Jamie ate healthy, I ate junk!

Tuesday, February 12, 2008

Mercedes Update

Last Friday, Jackson and Jonathan got the Mercedes Marathon weekend started by racing at the Bell Center. There were about ten heats - they started with children "racing" in strollers. Then, those children who could walk in walkers raced - one child had her walker decorated with red and white feather boas - it was great!

Jackson tried to show Jonathan what to do beforehand but little brother was not interested. Jonathan was in heat eight. He was not excited - he had been having fever for several days previous. We figured out he was cutting all four molars at once. Whew! When Jonathan's race started, he clapped for the other kids. We convinced him to get going himself. He loves men right now and tried to run for a random man on the side. He finally made it to the end - what is neat is that he is walking so well on his own and did it alone!

Jackson ran in the sibling race. He told me that if he ran against his friend, Cate, he would slow down for her. I said, "Oh, I'm sure Cate wouldn't mind if you tried to beat her, Buddy.":) He just loved being there and being a part of it all. He is such a wonderful, patient brother - God could not have gifted us more with this guy!

Sunday was race day for the adults. I ran the first leg. Jim, Jamie's dad, ran the second leg. Brooks ran the second leg and Courtney ran the third portion. Drew was our alternate. Since everyone arrived healthy, Drew ran with Courtney. Drew had been up since 3:30 or 4am, helping to set up water stations and cones throughout the course. Brooks, Courtney, and Drew are all friends from our Small Group at church. It was so wonderful to have them involved. We all wore our numbers on the front and Jonathan's picture on the back. Courtney turned, pointed to Jonathan's picture, and said, "This is for you, Buddy!" Jamie ran the last leg. As he turned to take off, his iPod malfunctioned. He would be running for 7.5 miles. He decided not to get upset and sang the songs to himself and prayed!

Our friends from college, Wade and Clarke, both had every intention of coming. Both had trained to run the half marathon but neither could race as a result of injuries. Wade pulled a ligament that was too painful to run on after mile two. Clarke had a puncture from a rusty nail that caused his leg to swell to where he had to wear a brace. We simply appreciated them training and trying to get here! We hope to see them next year!

We all ran better than we hoped. We finished the marathon in four hours and fifteen minutes. We showed up and were healthy. I had moments of trying not to cry. I have said it before and I will say it again. I have been racing since I was 14 and how awesome it is to race for something so important as this!

The WAKM team that ran for Jonathan came in second overall in the relay teams. They finished the race in just over three hours - 3:09!!!! They were incredible. To race for them, one must average seven minute miles - neither Jamie or I qualified for that! Thanks to Josh, Steven, Jess, Joseph, and Ann! Josh, Steven, Jess, and Joseph work at WAKM. Ann's parents work there - she is a seventh grade student at Mountain Brook Junior High - whoa!

Those of us who ran for Jonathan are currently in second place in the Bell Center's fundraiser by only about an $800 difference. YOU CAN HELP US CHANGE THAT! Our deadline is Monday, February 18. We would love to win with your help so please give by logging on to www.firstgiving.com/jonathanwarren. If you would prefer to write a check, please make it out to The Bell Center and send it to: The Bell Center, 1700 29th Court South, Homewood, AL, 35209.

Here are some pictures we took at the Bell Center race and at the Mercedes. Enjoy!

Jackson getting ready to race. He wore his Bell Center shirt and a
picture of Jonathan that said, "Running for Jonathan."

Here Jackson is trying to get Jonathan ready for his race.

Grandpa, Jackson, and Grammie on the sidelines waiting for the

race to begin.

Cate and Jackson getting ready to race for their siblings!

Molly (Cate's sister) and Jonathan, at the starting line.

Molly loves Jonathan! As far as the parents are concerned, Molly and Jonathan

are betrothed.

Jim and Betty (Nana and Pops) before Jim ran the second leg.

Jackson and me after I ran my leg. Grammie and Jonathan in the

background.

Brooks ready to go!

Brooks' son, Brooks:). He wore his daddy's racing singlet and medal to school the

next day. He told his teacher that he ran in a race for his friend's brother,

Jonathan, and that he won the race. Sweet boy! He was so proud and excited!

Courtney, Jonathan, and me before Courtney ran her leg. Drew ran with her as well

(where is he?). She ran even though she was four and a half months pregnant!

Grandpa, Jonathan, Nana, and Jackson, waiting at the finish.

Pops (Jim), Julie, Jonathan, Jamie, Courtney, and Brooks. We neglected to get a

picture with Drew. At that point, Drew was babysitting Jackson and Brooks so we

could take a picture. Drew had been up since 4am helping to set up water stations!

This is Jonathan starting his race...
Jonathan crossing the finish line...
Jackson racing for his brother...

Thursday, January 24, 2008

Pictures and Personal Epiphany

My miscarriage in November was the catalyst for a personal discovery. I had wrestled with and convinced myself, over the last two years, that I was responsible for Jonathan's diagnosis. I began to wonder in earnest if God was punishing our family because of some sin I had committed of which I was unaware. If I didn't discover it soon,I feared what I might bring upon our family.

Friday night, I met up with my old Biblestudy group and asked them if they thought it was possible Jonathan's diagnosis was a punishment. That was met with a resounding "no!" and Romans 8:1, that there is no condemnation for those who are in Christ. They encouraged me to identify the lies and to quit believing them. This discussion gave me a ray of hope.

Sunday, our pastor preached on being desperate for the Holy Spirit this week. We read Exodus 33 about Moses meeting with God and experiencing God's glory. Our pastor challenged us to fast on Tuesday and to pray that God would show us as much of His glory as we could handle. I began praying that moment for God to reveal His glory to me. I found myself drawn to Jonathan more than usual and started to see our situation in an entirely different light.

Monday night I started the process of beginning Jonathan's baby book - I printed out pictures from the first six months of his life. I printed out pictures of him as a newborn (http://thefourjs.blogspot.com/2005_11_01_archive.html), in his "crib" in the NICU under the blue lights, coming home with a heart monitor on, prep for heart surgery, what he looked like immediately after his surgery (http://thefourjs.blogspot.com/2006_02_01_archive.html), his staples from the surgery (http://thefourjs.blogspot.com/2006_03_01_archive.html), his chest after the staples were removed, and pictures of him totally healed from his operation.

After praying constantly, "Lord, show me Your glory, show me Your glory, show me Your glory," I truly saw the photos for the first time. I realized that God had been showing me His glory all along - I was simply too blind to see it. Jonathan should not have survived his first night here - a nurse just happened to notice him turning blue. He was jaundiced, but recovered. He could not maintain a warm body temperature for days but finally did. His lungs would not keep his oxygen at safe levels, but they eventually did. He could have died in heart surgery but he didn't. Jackson could have resented the focus on Jonathan but he didn't - he kissed him every chance he got and continues to help as much as he can. This situation should have made our marriage harder but it has made it so much better.

Looking back, I am ashamed of how I responded to the Lord in November of 2005. Grief for what could have been was fine - lashing out at the Lord was a mistake. He was in control and could be trusted - I had convinced myself otherwise. Bringing Jonathan's diagnosis into our lives has been the best refiner of my faith and I could not be more thankful. I realize that Jackson, Jonathan, the miscarriage - all of it - is in God's hands. His purposes cannot be thwarted and I can relax. I am simply thrilled that the Lord has not given up on me and continues to pursue a personal relationship with me.

Seeing His glory,
Julie
juliewarren@mindspring.com

Jason, Gracie, and Jonathan.

The Cousins.

Julie and Noah Bratcher.

Emma holding Jonathan while watching a video.

Jackson and Eric playing Emma's princess game.

Jonathan got a soccer ball for Christmas.

No shower, no make up for Mommy, loving it.

Jackson requested a robot from Santa. Little did "Santa" know

that the robot says "DESTROY, DESTROY, DESTROY."

Voelkert family - Ryan, Em, Eric, and Emma.

Daddy, Aunt Emmy, and Jonathan look like the Doodle Bops!

Uncle Ryan.

Jamie, Julie, Jackson, and Jonathan - not sure why Jonathan is still

in his PJs and we are not...

Pops and Nana.

Jackson getting his Transformers.

For some reason, Jonathan likes wearing this mask around the

house.:)

Jackson at the park with us and Grammie. He hates wearing a helmet.

New Years' Eve with Linden, Ashby, and Phillip.

Julie, Kasey, and Julie at the Cundiff house.

Hard to explain this one - Joel told us that this is how all the

Hollywood types pose so they don't look like they have a double

chin... supposed to be more flattering...

Again, Jonathan is at Jackson's mercy. Jonathan does this when he hears "we lift

up our hands and pray" on the iPod.

Jackson and Jonathan "playing the drums."

Wednesday, January 02, 2008

The Rest of 2007

Merry Christmas and Happy New Year from the Four Js! This year has been a good one for the Warren family - full of challenges and fun.

I got pregnant in September and was due June 15. I ran a 10K race with friends on November 3 and had one week to go before we started telling family and friends another baby was on the way. I felt very peaceful and excited - a little scared but mostly at peace. I ran through both pregnancies with the boys so didn't think anything of it. After the race, I miscarried. The doctor assured me it had nothing to do with it. I had other questions - did it mean the baby had genetic abnormalities? Was that God's way of saying "no" to my desire to have more children? I sucked it up and took it well on the outside. I didn't want to take too long to grieve - I wanted to get over it and not be the person who always had "issues." I won't lie - it was a disappointment and while I know the Lord has a plan, I have found it difficult to accept the fact that a new person won't be arriving this summer.

Jamie and I know that we are not immune to hardship - we don't get a pass and neither does Jackson or Jonathan. Quite honestly, a few years ago I probably would have told you that one does get a pass after "x" amount of difficulty. I don't know where I got that idea, but I had it. I thought if you worked hard enough, you could ward off pain. God would protect you from things. From a distance, I thought those going through tough times either were paying consequences for poor choices or the Lord had chosen them to be martyrs. I have spent years angry that God didn't protect me from hardship. I would vaccillate between anger at Him and anger at myself wondering why He didn't protect me or wondering what else I could have done to avoid the heartahce. I have come to the conclusion that He knows what He is doing, He is not caught by surprise, and I could not have done more. I have realized that what comes my way is totally within His control and is for His glory - easy or hard times. I can continue to respond angrily to rough situations or I can roll with it and quit comparing my sitation to others. I have compared myself to others my entire life - grades, athletics, relationships, etc. I either come out on top or at the bottom. I have pleaded with the Lord, saying, "I did all this and you STILL let something happen to me? Why not that person or that person who made this or that poor choice?" I equated poor choices with pain and good choices with blessing.

I am beginning to realized that my difficulties have been the biggest blessings I have ever had. I will not be trite and say I don't ever struggle with what has happened over the years. I do - but that is momentary. A friend of mine recently confessed that had everything gone her way, she would not pursue a relationship with God because she would not "need" Him. I concur. I have pursued God out of obedience and more from an academic perspective. The last years have forced me to live out my faith rather than just study it. I have had to put into practice what I have spent years studying. It has been tough but rewarding. I have been brought to my knees. I see my need for the Lord and see how I cannot do more to earn His approval or to gain immunity from hardship. I just have to let go of the anger, pride, and bitterness that I have a tendency to store up.

One of my friends asked me today if I have any New Years' Resolutions. I am always resolving to lose five or ten pounds and to catch up on scrapbooking or journaling. My hope is that I can be easier on myself and others, that I can let go and accept God's grace. I am tired of trying to do it on my own!

On another note, we are gearing up to run the Mercedes Marathon to raise money for the Bell Center again this year. Last year, you all helped us to raise over $20,000. This year, so far, Jamie, Jim, and I are running for Jonathan. Another team headed up by our financial advisor, Josh "The Slavedriver" Reidinger, is running as well. Please join us by supporting the Bell Center this year at www.firstgiving.com/juliawarren.

Hoping to write more often,
Julie:)
juliewarren@mindspring.com