Monday, April 30, 2007

Elijah Update (April 29)

Dear Friends,

Two steps forward, one step back. We have just been moved again. Not home but back to our home away from home. PICU.

Elijah began having some struggles today with his breathing, very rapid breathing with low oxygen saturation. An x-ray was taken and it was found out that he had a large amount of fluid in his left cavity. This is the cavity that the doctors were hoping would "communicate" with the right and would drain over to the right to be pumped out into his abdominal cavity. The doctor, known here as "the fixer", had to draw out over 100 cc's of fluid tonight. Right now Elijah is resting, his respirations are getting lower and in the normal range, his color is back and he is breathing much better. He is on some morphine right now to help him with his pain, oxygen to help keep his "sats" up and an iv of fluid to keep him hydrated.

We look at Elijah and we are amazed with his fight to live this life. What God must have planned for this little guy we can only imagine. Tonight his dad looked at him and said, "Oh little buddy, we can learn so much from you! You fight SO HARD!"

We do NOT feel helpless. We just feel tired. We were so excited to be heading home soon but are grateful that this occurred while still in the hospital and not at home. We now have to figure out what is going on with the left cavity. The doctor has stopped his feedings again to clear out his system and decided that the mom's milk was too much for his system right now.

Please lift Elijah up to the throne of Grace. We know HE controls it all! We so desire for our little boy to be home with us.
Pray for Joel as he struggles with where to be... here with his son or home working. There is such a conflict in his heart.
Pray for Judy's mom, "Mimi", who is having a hard time watching her grandson go through all of this. We are grateful that she is here with us during the ups and downs.

JJ and THE FIGHTER (maybe the next Rocky)

Sunday, April 29, 2007

Elijah Update (April 28)

Dear Fellow Elijah Warriors,

Our Elijah fan club is spread far and wide... all across the United States, Africa, South America, Europe, Asia, India, Iceland, New Zealand... It is amazing how many people in the world have heard of Elijah and are praying for him. Thank you! We received a package the other day, and before we opened it we were arguing about whose friend this was. Neither of us recognized the return address. We opened it, and the card read: " You do not know me, but I have gotten your emails from ___" We did not even recognize the name of the person mentioned. Yikes! Our story is being passed and passed and passed! Thank you for that very special package and note. :)

Every day we are amazed at God's greatness and love. We look at Elijah and think about the love that we have for him. We know that God loves Elijah even more, and that is overwhelming. How much more did God love His only son, Jesus. WOW! The pain that He must have felt watching Jesus die for the sins of the world. We cannot even imagine as we have painfully watched our son go through so much.

Elijah has some great news to tell today. On Wednesday his surgeon came to see him and wanted to pull out his left chest tube. A meeting with the other doctors convinced her to leave the chest tube in for one more day. SO on Thursday morning she came in and removed the tube. There was great rejoicing in his room and in the PICU. His parents were elated because they could pick him up and cuddle with him easily. Elijah was relieved because that weight was finally gone.

He has been sent one step closer to going home. On Friday we were moved from PICU to the Pediatric floor. YEAH! He is free of everything except his oxygen monitor to tell us how well he is breathing.

Going home will involve a few things though... Elijah is not up to eating as much as he should be. Today I think we are going to include some of his mom's milk in his feedings to see if he likes that better. He has to show some weight gain in eating before we will be allowed to head for Ness City. (Tonight we had to give him a feeding tube. He was not eating well and we were growing concerned so hopefully this will help expand his tiny stomach some. He has not eaten well in 5 weeks, being on IV fluids, so hopefully this will help.) We also will have the challenge of pumping his shunt every 30 minutes. During the daytime his mom can handle this pretty well but during the night we face a challenge. We will all need some sleep and I do not know how we will face this but will figure that out.

The nurses have been telling Elijah that he is giving his parents gray hair (mainly his mom). I have gotten emails from people telling me that I look tired. A Ronald McDonald Manager asked Joel about his mother-in-law... meaning ME! So, after all of this I decided I need to get something done. I went yesterday to get my hair cut and colored. So, now I just look like a stressed out mom with colored hair. HA! One of the PICU nurses set me up an appointment at her salon and I really liked it. So, Elijah gets a different mom for a few months.

Please pray with us for the following:
* Pray that Elijah's body will continue to dissolve all the clots from the SVC Syndrome (Superior Vena Cava). His body is circulating so much better now.
* Pray that the blockage in the Lymphatic System, especially effecting the Thoracic duct, will dissolve and allow all of his Chyme to go to the right place through his body and not into his chest cavity.
* Pray that we will be able to keep up with his pumping to keep his chest cavity clear until he no longer seeps into that cavity.
* Pray that he will start eating well.
* Pray for wisdom on treating Hemophilia B. Do we have another catheter put in to give him Factor? Do we infuse only when we need to? Do we worry about his bruises? Do we worry about his teeth coming in? These are all concerns that we are going to have to work with and deal with as a family.

A friend, Janet Sonnenberg, is a mother who has been through far worse trauma with her son then we could ever imagine. She is the mother of Joel Sonnenberg and author of the book JOEL. Check it out if you have not to hear this amazing story. Anyway, she was on a plane and read in the in-flight magazine about a "cutting edge" treatment for Hemophilia B. The University of Nebraska has been doing some research involving pigs milk and an oral treatment. So, another question we have is: Do we buy a pig? :)

Please pray for us in these huge decisions for Elijah. He is such a wonderful little boy with lots of challenges. Pray for peace for his parents.

Thank you so much for all the prayers, cards, notes and love.

JJ & Super E

Friday, April 27, 2007

Free Music! HOPE FOR THE HOKIES

In the wake of the terrible, horrible, senseless massacre at Virginia Tech last week and the recent torture/murder of three believers in Turkey and, and, and ...

The bad news is that the world is a mess (and sure seems to be getting messier). The good news is that God gives hope and healing, joy and peace to everyone who will open their hearts to Jesus. It sounds simple, and I guess it is. Without Jesus in our lives, it's easy to be overwhelmed by the evil all around us. But with Him, we find the comfort, strength and hope to go on.

If you've ever lost a loved one, felt like you can't cope with today's burden or wondered what the answer is to this crazy, mixed-up world, I hope you'll turn to Jesus for all that you need. He's real, He's relevant and He's reliable. And if you need a sense of His presence with you right where you are, this free music download might just help. It was put together to encourage anyone suffering from the events last Monday and is available through the month of May.

* * * * * * *
To You, O Lord, I lift up my soul
In You I trust, O my God
Do not let me be put to shame
Nor let my enemies triumph over me

No one whose hope is in You
Will ever be put to shame
That's why my eyes are on You, O Lord
Surround me, defend me
O how I need You
To You I lift up my soul
To You I lift up my soul

Show me Your ways and teach me Your paths
Guide me in truth, lead me on
For You're my God, You are my Saviour
My hope is in You each moment of the day

Remember Lord, Your mercy and love
That ever flow from of old
Remember not the sins of my youth
Or my rebellious ways
According to Your love, remember me
According to Your love
For You are good, O Lord

(To You O Lord by Graham Kendrick, based on Psalm 25)

Thursday, April 26, 2007

Absolutely Edible

When we lived in Cyprus, we had this wonderful travel agent named Lena. She and her brother worked with their mother at her travel agency. The mom was such a trip. As a Cypriot woman, mother of five and grandmother to many more, she was a real maverick because she had started this business on her own. She spoke something crazy like six languages, and she always had words of advice for me. When I was pregnant with Jack, she used to tell me not to worry because all of her labor/deliveries were painless and over within minutes. Matt and I both enjoyed going in there, nevermind that by the time we walked out we both smelled like smokestacks. It was always high energy, man, and -- oh yeah -- it was air-conditioned.

Lena was hilarious, just like her mother. She was really good at her job, which saved Matt lots of time/energy planning for assignments. She was really kind as well, and she l-o-v-e-d babies. I think all Cypriots love babies, but Lena just went bananas whenever we brought Jack into the office. Her son was 18 and in the army, and she really missed his baby days. Anyway, whenever we took Jack into the travel agency, Lena would stop taking phone calls, pull Jack into her lap and let him play with anything on her desk that struck his fancy, all the while going on and on and on about how “absolutely edible” he was. That was her phrase, “absolutely edible”.

I didn’t really get it. Don’t get me wrong, I was head-over-heels in love with my son and kissed him constantly. (Smooch, smooch, smoochity smooch!) But eat him? I just laughed it off. Silly Lena. The more she said it, though, the more I started to notice other people saying similar things. “Oooh, that baby is so cute, I just want to bite him.” These weren’t just Cypriots but people from various places and cultures, including my own.

Just imagine my surprise when Sophie was born and -- oh. my. goodness, I guess she was a few months old and starting to fatten up a bit after the whole newborn stage -- all of a sudden this crazy urge came over me, and it was all I could do NOT to bite her! I feel ridiculous even writing this, but it’s true. Now I know what Lena was talking about. And Lissa, who often refers to her “delicious baby”. And all my other friends I used to think were off their rockers. Now I can totally relate.

So I thought it was really funny when we were in a Greek restaurant last month and the waiter (also Greek) looked at Sophie and asked how old she was. Fourteen months, I said. And this was his reply. (Honest, I am not making this up.)

“Ooooh, they are so cute and so sweet at that age, it makes you want to eat them. After a while, though, they grow to become teenagers. And... then you kind of wish you had.”

As the father of three teenage girls, he looked pretty serious about it -- but then he laughed and said something about children being a blessing. (Whew!) The teenage years seem a while off for us at the moment, but Jack’s turning four next week so I know it will come sooner than I’m ready for it. For now, though, I’m going to enjoy all the smooches, hugs and snuggle times I can get away with.

I just checked on Jack and Sophie, asleep in their beds. And eeeeeee! They are oh-so-cute! But I don’t think I’ll eat them tonight.

Not just yet…

Monday, April 23, 2007

Elijah Update (April 22)

Hello friends!

Before Elijah was born. Joel and I led the latest Beth Moore Bible study, Daniel, at church. We both learned so much through it and I have a few things to share with you. We were studying Shadrach, Meshach, and Abednego being thrown into the fiery furnace. Remember that story? What a fun story, worth reading again or for the first time. (In the book of Daniel....check it out on any on-line Bible resource if you do not own your own Bible) So many "mini" miracles occurred during that entire incident and we see mini miracles in Elijah's experience.

We learned that God delivers us in one of three ways:

1. He delivers us FROM the fire (makes it go away)
2. He delivers us THROUGH the fire (walks with us all the way through)
3. He delivers us BY the fire, into His loving arms (uses the situation to bring us Home to Heaven)

In our class we had about 10 people. One of our members began to get sick during the study and said that she felt that God was delivering her BY the fire. She had a peace about it all and now she has gone home to be with Jesus. We heard that she was working on a blanket for Elijah when she died. We pray and pray that God will deliver us FROM the fire. He has chosen not to make it go away quickly. Right now we feel we are being delivered THROUGH the fire. Elijah and his mom and dad are being held close to Him the whole way. Thank you for being with us in this fire and for carrying us THROUGH.

If I had written an update on Friday you would have sensed a lot of discouragement in my writing. We got to the hospital on Friday with Elijah feeling lousy! He was vomiting and had neon green liquid from the other end. His little bottom was so sore and there was concern about bleeding. In his vomit we noticed blood and so immediately Joel and I asked that he be given a dose of factor to put a stop to this. He was restless all day Friday and he had not slept soundly for days and days. Needless to say we were concerned for the little guy.

My mom arrived at the airport right on time and when she saw the little guy she was concerned with all the tubes. We are so grateful that no one else had to see him when he was in super bad shape. He had so many tubes in the beginning and now we are down to one chest tube. We are so grateful for the prayers of you all as you have carried us through so much.

Today Elijah is feeling great. On Friday night the doctor decided that it was time to clamp his left chest tube. We would see how his body would react with four hours clamped and two hours open. He tolerated it well and his chest x-ray was the best ever. So, she decided to clamp the chest tube and only unclamp when he was in distress. He lasted for 16 hours before he became irritated. We unclamped the chest tube for two hours and he drained a huge amount. So, we are going to have to take this in stages.

Sunday we arrived to the hospital and he was just waking up, strrrrrrrretching and was happy and smiling. So far he has been clamped for 11 hours and he seems to be handling it well. We will keep trying to increase the time and see how his body handles it all. Please continue to pray that the blockages in his lymphatic system open up and let things pass normally. We are excited about these improvements and pray that Elijah will continue to circulate things properly. He still has some work to do with circulating especially to his legs but he is working on it and with Gods help they are working it out. I pray that one day Elijah will be able to tell some great stories about memories he has of playing with angels. I pray that the Lord sends special angels to play with him during the night.

Thanks for all the prayers, cards, notes and concern. We greatly appreciate all of your love for us.

Trusting THROUGH the fire,
JJ and Super E

Saturday, April 21, 2007

Elijah Update (April 19)

Dear Friends,

Since I last wrote we have had some very nice days with Elijah. Joel left for Ness City Sunday evening and Joel's mother, Grams, came to stay with Elijah and Judy Monday afternoon.

Grams stayed up with Elijah on Monday and Tuesday night. It is hard to do, miss a night of sleep, but it did give her some special time with Elijah. Grams is very good at singing, talking, and reading to Elijah. Elijah is the only one who gets to hear Grams sing. She stops when anyone else comes into the room. Her songs are just for Elijah.

During this time with Grams Elijah has been reaching for and grabbing small items that he can get his fingers around. The chest/abdomen shunt seems to be working and most of the time Elijah doesn't mind us pumping it.

On Wednesday the doctors decided it was time to remove the right chest tube and his central line. They took out the tube because the shunt is working so well and they took out the central line because it was starting to be problematic and they decided that it is time to start giving him formula again. Elijah still doesn't want to suck so we are feeding him with a feeding tube.

Elijah seemed so happy to be rid of the central line and the chest tube. I'm sure it makes him feel much more free.

Grams returned to Ness City and Joel returned to Wichita on Wednesday evening.

Today, Thursday, started out very good. Elijah was wide awake in the morning and the surgeon was excited about the fluid in Elijah's chest. She took the left chest tube off "suction" so it will drain just when there is a lot of fluid. We thank and praise God for this exciting improvement.

We have been giving Elijah some formula by mouth. He doesn't eat much and sometimes he has trouble keeping it down. We talked about this and his irritability with our doctor and the similarity to his actions before or during his brain hemorrhage so the doctor ordered a CAT scan. The scan showed an increase in fluid in his brain so the doctor "tapped" the reservoir that is on his head with the shunt that goes down into his ventricles. You can see the bump the reservoir creates on the top left side of Elijah's head. It really isn't very visible. Anyway the doctor tapped and drew out 10 cc of cerebral-spinal fluid (CSF). We were amazed at how clear the fluid is now. It is supposed to be crystal clear and it almost was. The last time the CSF was drawn it was as darker than weak tea. This is a wonderful reason to Praise God. This shows that the previous closed off drain tubes from the brain to the spinal column has been opened and the fluid has been flowing freely and there is no blood clot in the brain. The doctor suspects that some breaking down blood clots from his blood vessels may have clotted the CSF tubes. But they should break down quickly and be destroyed. The CAT scan also showed that there has been no more hemorrhaging.

Elijah responded well to the tapping initially, but then became irritable again. He just doesn't seem comfortable, able to sleep easily, and still doesn't want to eat. As I write this I am very thankful for all that God has done for our son, but I am sad that Elijah is acting so sick right now. It is so hard to see the end right now. I'm glad I don't have to see the end just know that God is in control and he knows what is best for Elijah and will see him through this.

After supper tonight Judy was holding Elijah and he became very irritable, similar to the way he acted previously after a CSF tap so we put him back into his crib. Elijah just wouldn't be calmed so Judy fixed him a wee bit of warm formula. At first Elijah had a hard time drinking, but then he gobbled up the formula like he thought it was the best stuff in the world. After he finished that Judy made him a wee bit more. Again he had trouble starting but then drank it all down. Elijah was much more calm after this and seemed to rest peacefully.

That was how we left Elijah after praying for him. So we will see how the night goes.

Judy's mom arrives tomorrow afternoon. We are very excited to see her again.

Thank you so much for praying and praising God for our Little Man.

Joel, Judy, and Elijah

Friday, April 20, 2007

Free Book! TRUE GRIT

I’ve just found out about a book that’s called True Grit – Women Taking on the World, for God’s Sake by Deborah Meroff. In brief, it’s nine stories of real women serving God in various places, followed by facts and statistics about the shocking daily realities of millions of women and girls around the world. Look it up on Amazon.com or click here for another, more detailed review.

Amazon.com offers this book for $10.99 -- or you can e-mail George Verwer, founder and director of Operation Mobilization, for a FREE copy. He believes the message is so important that he’s trying to distribute one million copies! For your free copy, send your name and postal address to: george@verwer.om.org

I just did.

Thursday, April 19, 2007

How a Boy Thinks

The Almost Four Year-Old: “Why are bricks rectangles?”

The Mommy: “Hmmmm… That’s a good question. Let’s think about what would happen if they were circles instead. The bricks wouldn’t be able to stay in place and all the houses would fall down, so that wouldn’t work. If bricks were triangles, there would be too many gaps to make a wall, unless some of them were placed upside-down, and that would be too confusing. If they were squares, it would be hard to stagger them because they’d be too close together…”

The Daddy: “It’s so the weight of the wall can be evenly distributed.”

One of the many reasons I married this man is that he can think on his feet, whereas it takes me a while to process the question and think through all the possible answers before finally settling on the one that makes most sense. Usually out loud. Mind you, Matt probably knew the answer already. He's a man, after all. Me, I’ve never given bricks much thought. But as Jack asks questions to figure out why the world is the way it is, I’m gaining great insight into how a boy thinks. For this woman of one sister, myriad girlfriends and a husband whose ways are often the opposite of mine, it's like a mystery is unfolding before me -- very interesting, often curious and with funny surprises along the way.

Tuesday, April 17, 2007

Elijah Update (April 15)

Good morning Elijah Warriors,

Elijah had a rough night after his surgery so Judy and I have been taking turns staying with him during the night. This is something Judy wanted to do last week, but I didn't see the need. But he seems to have so many problems at night that we decided to stay with him.

Last night was no exception. Yesterday evening we had trouble keeping his central line open, a special long IV in his groin that extends up to veins in his abdomen. Late last night or early this morning the surgeon came in to "re-wire" his central line. This isn't easy on Elijah and for some reason they had to do it without any anesthetic. So with every stitch to hold the line in place Elijah let out a scream. Poor Judy had to hear it all.

Now it is mid-morning and Judy is sleeping and I am watching over Elijah. Again he had a rough time as we had to change the taping on his chest tube. It was leaking. So again several people were crowding around him and he was feeling tugged on and pulled on. He took quite a while to settle down. He didn't even want to listen to Seabiscuit or The Cat In The Hat. But eventually Bach settled him down and I think he is sleeping now. Sometimes it is hard to tell.

As we wrote earlier the surgery went well, the recovery was rough but eventually he settled down, and the evening was very good. Friday morning was when our concern was raised to "Elevated" status. His left lung had collapsed some and he was having trouble breathing. This trouble seemed to resolve itself by noon, but it was frustrating to us that the doctors didn't know what the trouble was until late afternoon. Also that morning the new shunt pump was not pumping and no fluid was moving through it. The pump is just a "bulb" that is hand squeezed to move the fluid. Elijah was draining out of the chest tube, but not through the shunt. The doc decided it was because his abdomen was so full that the pressure was greater in his abdomen then in his chest.

Saturday morning after a x-ray the doctors said the left lung was ok, but the right lung was collapsed some. Uggh. How frustrating to us. Off and on throughout the day Elijah would labor a bit with his breathing. But most of the time he didn't have a speck of trouble. I was able to hold him for about an hour yesterday evening and give him some food from a bottle. He still isn't wanting to eat much which is sad to us because now he can have 20 cc every 3 hours. Last night Elijah was in a good mood and willing to "play". He is just so much happier when he is not being poked and prodded. My prayer now is that Elijah can rest the remainder of the day without nurse and doctor interference and that God will continue to heal him. Hopefully mom and dad will be able to keep themselves from calling in drs. and nurses to ask questions that encourage them to handle Elijah.

Judy and I had planned on going to church this morning, but with the brouhaha we were too late for the early service and Judy is now sleeping through the late service. Can't blame her, she was up all night.

What to pray for? Please pray that Elijah can sleep and have a peaceful night. I am so thankful that God has given us prayer warriors who are awake when it is 2-6 am "Elijah" time so they can easily pray during this time. Please pray that the shunting process works and Elijah's lymphatic system will slow down the production of chyle. And please continue to pray that the lymphatic ducts open up and allow the chyle to flow where it is intended to flow thus stopping all drainage which will allow all of his tubes to be removed. Pray that Elijah will be healed soon and we all can go home.

Our niece, 6 year old Evann - Heather's daughter, prayed this the other night, "Please help Elijah to get better because when he gets bigger I want him to know that when he was little he had lots of troubles and You did amazing things and grew him up." What a great prayer. It is so simple and yet says so much.

Please also pray for Joel's parents' health. They are running the businesses virtually by themselves plus looking after Joel's and Judy's personal affairs. This is a concern to Joel that they will wear themselves out. They have even had to vacuum water out of our basement two or three times after the last rains. Thankfully the funeral home (family business) hasn't been busy these past 3 months.

Thank you all for praying. Your prayers are supporting us more than you know and more than we will ever know. We do know that God is doing great things in our lives and God has blessed us in so many ways through Elijah. God has blessed us with a wonderful little boy and we are so glad we have him.

We serve a great God. We are so thankful that He did what we could never do -- He gave His son to be sacrificed for worthless sinners so that those who believe in Jesus and accept Him as Lord and Savior can have eternal life in Heaven. We are so thankful that we can pray directly to God and ask Him to forgive our sins and ask Him directly to heal our little boy and provide comfort and strength for us. Only God is omnipotent, omnipresent, and omniscient. Only God is always present to hear our prayer, only God know exactly what we need and how we feel. We serve an awesome God.

If God is speaking to you through Elijah's circumstances please respond quickly to God's calling so Elijah can be healed and we can go home.

Servants of the Living God,

Joel, Judy, and Elijah

Friday, April 13, 2007

Elijah Update (April 12)

Thank you all for your prayers. Elijah did well during surgery. He had some problems in the recovery process but recovered himself without a need for machines. He is in pain right now and we are treating it with Tylenol. Please continue to pray that this procedure works. One end of a shunt was put into his chest cavity, the other end into his abdomen. In the middle is a sort of reservoir that has to be pumped every hour. Our nurse carries her timer on her scrubs to know when to come back. This fluid is being pumped from his chest cavity into his abdomen in hopes that this will go back into circulation. Please pray that Elijah does not swell too much and that this fluid....which is precious fluid with all his proteins and antibodies.......does go back into the blood stream. Pray that the blockage in his thoracic system will dissolve QUICKLY and that his body can get back to "normal". Pray for his pain. Pray that it will go away quickly.
----------------
Nine hours after the surgery, Elijah is doing well. He wakes up every now and then with a little grunt, sometimes a cry and then goes right back to sleep. Once in a while when he wakes up he looks around. If we are standing nearby he will look at us for a little bit and then drift off to sleep. Sometimes his eyes look focused and alert and at other times they look drowsy. I believe he is still feeling a little bit of pain, but not as much as early afternoon.

We haven't been able to talk with the surgeon today, she came by while we went grocery shopping (We have finally decided that we are going to be here more than a couple of days and the Ronald McDonald House doesn't feed us like the one in Kansas City.) The surgeon left both right and left chest tubes in Elijah. This afternoon the right tube was pinched closed so the only way the fluid could leave the right side of Elijah's chest was through the shunt. Now she has opened the right chest tube. I'm not sure the reason. Hopefully we will find out tomorrow.

Joel plans to go back to Ness City tomorrow to take care of taxes and some business. However it is supposed to snow tonight and it may be snowing in Ness City as I write this message. So we will see what actually happens. If Joel does go home he plans to return Saturday night or Sunday morning. So Judy will be alone with Elijah for a couple of days.

For any of you near a Ronald McDonald House a great project for your church or Sunday school class is to provide one meal for the occupants each month. Once you start this then challenge other churches or classes to do the same. At Children's Mercy in Kansas City we found this service to be so helpful during a difficult time. We have enjoyed all the volunteers at the Ronald McDonald Houses and Ronald McDonald Rooms inside the hospitals. Our first night back here at Wesley a weeping mother and father went into the Ronald McDonald Room just down the hall from PICU just to cry and hug each other.....the volunteer came up to me and said "Oh, let me make you a pizza, you NEED to eat!" Very wonderful staff.

Thank you for all of your prayers. Please continue to pray for little Elijah. Specifically the requests we mentioned. Thanks.

Love in Christ,

JJ and E

Our address in Wichita is
Ronald McDonald House
Room 4
520 N. Rutan
Wichita, Kansas 67208

Wednesday, April 11, 2007

Lord of the Dance

Before I had kids I was really amazed by people who talked on and on about their children. I had no idea how totally captivating these little people are, how amazed I would be by each tiny accomplishment, how strong is mother-love. But now here I am, with the vast majority of my mental and physical energy each day devoted to these two little dynamos, and it doesn’t seem fair to keep all the fun of living with them to myself!

Sophie is 14 months old tomorrow, absolutely charming in every way. She smiles nonstop, belly laughs at her brother’s antics and is pure joy to be around. We’re having a lot of fun watching her little personality develop, and one of our favorite things is seeing her “dance”. It just cracks us up. Matt and I are both music lovers, so it’s a rare day that our home isn’t filled with music of some genre. About four months ago, we realized that whenever Sophie hears music, she starts to groove. If she happens to be crawling on her hands and knees when the tune begins, she’ll rock back and forth. If she’s sitting on the floor, she’ll move her entire torso in time to the beat. If she’s being held in my arms, she’ll start kicking her legs and waving her arms as well. Of course, as her parents we just think it’s the most adorable thing ever.

The first time I figured out what Sophie was doing, I was holding her during worship at church. Truth be told, I have a hard time standing still while singing to our great God. I love the words of both the old hymns and some of the newer songs, but I really love the musical style of modern worship. It just makes me feel connected, authentic and free. So there I was, swaying back and forth, singing my heart out (I’ve always been a loud singer) and my baby girl was about to take off flying, she was moving so enthusiastically.

It makes me deeply happy to know that part of mothering means helping both Jack and Sophie learn to enjoy worshiping God. Whether it’s in church or at home, through words or music, in prayer or acts of service, I’m really excited about encouraging them to find their own faith in Jesus and to express their love for Him in a way that’s meaningful to them personally.

While reading Acts 16 a few months ago, I was struck by the profound description of Lydia as “a worshiper of God”. Wow. If only that was the clearest, most concise description of me...

To be honest, I find it hard to carve out regular quiet time these days. Although I grab Bible verses here and there and pray while going about my daily tasks, I miss the way it used to be when I could really focus on studying the Bible and have long, uninterrupted conversations with God. My worship times are a bit more, shall we say, creative at the moment. Spontaneous. Kid-oriented. Dancing around the living room to a worship CD. Telling and retelling stories about Jesus. Getting excited about His creative genius in nature. Reminding Jack and Sophie that when we pray, God listens. Singing songs like “This Little Light of Mine” and meaning every word.

My methods of worship may have changed with this season of life, but the object of my affection remains the same. Oh, that is one of my very most favorite things about God! He can do anything for anyone at any time, except change His character. Forever faithful. Constantly caring. Always, always good. There’s a gracious plenty in this world that I don’t understand, and when my heart hurts from carrying the burden of wondering why such things are allowed to go on, this is the one thing that finally brings me comfort -- God can be trusted. His righteousness has not changed. He knows what He is doing, and His timing is perfect. One day I will worship Him face-to-face! But in the meantime, I practice here and now.

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Dance, Dance, wherever you may be
I am the Lord of the Dance, said He.
And I'll lead you all, wherever you may be
And I'll lead you all in the Dance, said He.
(from Simple Gifts, a 19th century Shaker song)

On the Sabbath we went outside the city gate to the river, where we expected to find a place of prayer. We sat down and began to speak to the women who had gathered there. One of those listening was a woman named Lydia, a dealer in purple cloth from the city of Thyatira, who was a worshiper of God. (Acts 16:13-14a NIV)

Elijah Update (April 10)

Dear Elijah Warriors,

Let me start out with a funny thing. One of the managers at the Ronald McDonald House asked Joel if I was his mother-in-law! OK, I know that I have aged a lot these last two months, but I don't think I have aged enough to be his mother-in-law. (sorry mom!) It made him so happy to have someone think he was SO young. HA!

Elijah is doing well. He is a very happy little guy. Last night we were both on different sides of his bed, and as we each spoke he would move his head to look at who was speaking. We started having fun with him and talking just to watch him turn his head to look at us. We even got a few smiles out of him.

The doctors and nurses here are so positive about his outcome. Following his SVC syndrome issue....when he clotted throughout his body....he had quite a few problems circulating his blood. Our doctor was excited yesterday when he checked his head and found that color comes back quickly when you press on his skin. We praise the Lord that his blood is moving so well. His chest cavity is still draining fluid so there is still a blockage somewhere in his thoracic system. Chest tubes are not designed to stay in someone for a long time, and the time has come to move to the next stage. God has chosen to answer our prayers to stop the drainage with a "no". So, unless He decides to clear this up before Wednesday evening, we will face a surgery on Thursday morning at 7:30 a.m. (Kansas time). The doctor wants to put in a shunt that will drain his fluid down into his abdomen. This will hopefully only need to be used for a few months until the thoracic duct that is blocked opens back up.

Please pray with us: Pray that God will open up this duct before Wednesday evening. If he chooses to not do that.....be praying for the surgery on Thursday. Pray that Elijah will handle it well, that he will clot as he is supposed to. They will be using small doses of Factor 9 as needed. We were just informed today that the results of Elijah's blood test at Mayo Clinic shows that he DOES have the chromosome marker for Hemophilia B, so we will deal with that as we go along. We praise the Lord that he has clotted well here in Wichita, that his bruises are healing up quickly and that he is doing so well even without the Factor 9 infusions. Continue to pray with us for this little boy.

A song that God has given to me is: "Have faith in God, He's on His Throne, Have Faith in God, He watches over His own. He cannot fail, He must prevail. Have faith in God, have faith in God."

So much has happened over the past few months. Elijah was born, and that was one of the best days of our lives. We are so grateful for him. We never would have planned these last 2 months and been excited about it, but God is giving us the strength for each day. We know it is only through your prayers that we are being held up. We hope that you all can meet this boy one day.

Praying for the Gentle Whisper,

Judy (Saca), Joel, and Elijah

P.S.
When we came back to Elijah's ICU room tonight after supper the nurse pulled us aside and said, "We had a traumatic event happen while you were gone." Of course this isn't the best way to greet parents, we wanted to rush to our son's side and see what had happened. Our nurse continued to say that his right chest tube came out while we were gone, the surgeon had been notified and she had told the staff to monitor it over night and she would look into it in the morning, but if something happened she would be at the hospital in 10 minutes or less. We were relieved that Elijah was OK. This event didn't really shock us because just before we left to get supper the chest tube had developed a leak and really wasn't working properly. The surgeon did come to check on it and Elijah. She was satisfied all was OK, she doesn't want to replace it because she plans on removing the tubes on Thursday. So the "traumatic" event wasn't so traumatic after all. Elijah is very happy not to have a tube sticking out of his right chest and has been quite content tonight.

Monday, April 9, 2007

Elijah Update (Easter Sunday)

Dear Friends,

Thank you SO much! Thank you for fasting and praying with us for Elijah. Thank you for standing with us through this battle. We pray that you will all be with us for the victory as well!!!

Right now, Joel is holding Elijah and I am sitting on the floor writing this letter. PICU is very crowded today and they had to take our extra chair away for another family. We are amazed at the changes this department goes through in a matter of hours. Elijah came in as the most critical baby on the unit and he required the attention of several nurses and doctors. Today he requires the attention of one nurse and our doctor came by and said "I will be back to talk with you, there are more critical kids here today." We are so grateful to be out of the critical stage and into the "wait" stage. We would love to be out of the "wait" stage and move on from there.

What is going on? I will let Joel write the medical part. :)

I didn't realize until a moment ago that we haven't written since April 1. I'm sorry for the long delay as I know so many of you wait anxiously to read about Elijah. As Judy wrote we are waiting. Every day we wait for the doctor to come in to talk with us to give us news about our son's condition. Sometimes we wait until noon before we receive a report. And the last 8 days the report has been the same, "We just have to wait and see". Friday our doctor told us Elijah is "Rock Solid." Meaning he is stable and nothing is changing for the good or bad. We are very thankful that God is protecting our boy.

Elijah still has the chest tubes in place, and they are still removing fluid from his pleural cavity (the area around his lungs). We are continually amazed at the amount of fluid Elijah's body produces and dumps into his chest. This fluid is supposed to be circulating through his body. Because it isn't circulating he is losing white blood cells, immunity, other blood components and important nutrients. The doctors can replace the nutrients and some of the blood components but not the white blood cells nor the immunity. We pray every day that God will protect our boy and keep contagious diseases away from Elijah. God has been faithful.

The doctors are giving Elijah just a few more days to stop the flow of fluid from his chest which hasn't slowed since day one. This means the blockage to his lymphatic system must be removed and only God and Elijah can do that. We pray that God will make this happen before the end of Easter Day.

They say he can't have the chest tubes forever (I agree), and the medicine doesn't seem to have helped. The next step is surgery which doesn't excite us at all. Three options of surgery seem to be open to us: 1) Tie off the main lymphatic duct, 2) Shunt the chest cavity to the abdominal cavity and 3) my least favorite -- Fuse the outer lung wall to the lining around the lungs - this would leave no room for the fluid to accumulate. I don't really understand how this will help, but Dr. V. says it does work.

What did you learn while your fasted and prayed? Did God teach you anything? God gave us a great peace. We enjoyed sacrificing our food in order to pray over Elijah. We were reminded of Gods amazing sacrifice and Jesus' pain in order for us to be given life. We prayed a lot for our little guy and are grateful to the Lord for His protection of Elijah. We prayed for Elijah's healing. We do not understand why God is taking so long or what His plans are for Elijah. However, we are so grateful for our relationship with an Almighty God who cares about each one of us. What a peace we have.

Easter Sunday: We were able to attend a wonderful service here in Wichita. We loved the worship and were both touched by the message.

Joel's sister Heather came from Lawrence, Kansas and spent some time reading with Elijah. He LOVES it when we read. He gets everything from the Bible, Bible Stories for little eyes, Dr. Seuss, the Limbaugh Letter and now Joel is working through the story of Seabiscuit with him.

Joel, Judy and Elijah

Wednesday, April 4, 2007

Spice of Life

One of my favorite things about living in various places, besides getting to know people from different backgrounds, is learning to enjoy ethnic foods. Being the product of a “mixed” marriage (my mom is a southerner from Kentucky, and my dad is a “Yankee” from the Upper Peninsula of Michigan), I grew up appreciating the regional differences in the meals at my grandmother’s tables.

Then at Asbury College I met Lyn, a fellow Salvation Army student from the Bahamas. Visiting in her mother’s home was nothing short of delicious! Mummy makes a melt-in-your-mouth fried grouper, peas and rice, Johnny cake and guava duff. Mmmm, just thinking about it makes my mouth water all these years later, and I swear I can still smell the salt in the warm ocean breeze. In Kenya began my love-affairs with Indian and Ethiopian food, both so exotically rich and zingy.

I guess you could say I’m a "social eater" because I’ll try just about anything served among friends.

Not only do I love to eat, though, I really love to cook. Everywhere I’ve been, I’ve collected recipes along the way, and meals from every continent have been incorporated into our regular family suppers. Making things I’ve learned from friends through the years helps me feel connected with them still, in spite of being far away now. Memories bubble up as I work, and I find myself comforted by past experiences as well as the present creative process. My kitchen is a happy place for me.

When we lived in Cyprus, I took a six-week cooking course from a local chef. Roddy is Cypriot but grew up in South Africa, so his menu was Greek-ish with a bohemian sort of cordon-bleu twist. A true artist, each dish in his restaurant paired unique ingredients for an original flair. In class, though, he focused on traditional Cypriot dishes and gave us some helpful kitchen tips as well. Oh my goodness, taking that course was one of the funnest things I’ve ever done.

Jack loves to help me in the kitchen. Because of his sweet tooth (and the fact that the oven is a separate part of the process), baking is his thing at the moment. He’s getting really good at using measuring spoons and is starting to learn how to crack eggs. I’m so excited about passing down such a joyful and practical skill to my son. Little Sophie is already showing an interest in what goes on in the kitchen, too. Oh, I hope both of our children will grow up to enjoy the people -- and the flavors -- of the nations.

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So whether you eat or drink or whatever you do, do it all for the glory of God. (1 Corinthians 10:31 NIV)

Tuesday, April 3, 2007

Elijah Update (April 2)

Dear Friends,

Yesterday Elijah received his first real food in over a week. He gets 10 ml of formula to protect his stomach lining. It is kind of a tease for him but he gobbles it down and then goes to town on his pacifier. He does not seem too fussy and we are grateful for the food that God must be giving to him.

We received a suggestion from a friend who requested that we forward it on to you. We would like to ask anyone who is able and willing to join us in fasting and praying for Elijah on Thursday of this Easter Week. From 8:00 a.m. to 8:00p.m. If you feel that you are unable to completely fast but are willing to fast for one meal, or from your favorite coffee we would be grateful. Whatever you are willing to do with us would be greatly appreciated. We would love to hear from you on completion of the fast to hear what God has taught you. We are praying for complete healing of our little man.

Looking forward to the victory,
Joel, Judy and Elijah Fitzgerald

Elijah Update (April 1)

Dear Friends,

Many people have written and told us "I check e-mail several times a day waiting for an e-mail from you." WOW! We are humbled to have so many people concerned over our wee one.

Since Joel wrote last, we have had several milestones. Joel and I were able to hold him for a little bit. It is quite the process getting the tubes all in order but wonderful to be able to hold our little man once again. We do not do it often because it takes quite a bit of doing but we enjoy it when we can. I am not sure Elijah enjoys it. He sleeps through the whole process. I guess that means he enjoys every minute eh?

We are playing the waiting game. He is still draining quite a bit from his chest cavity and there seems to be some blockage in several places in his lymphatic system. We have to wait for his body to absorb these clots so that the system can function properly again.

At this time, Elijah is not on any pain medicines, he has chest tubes draining the fluid, he has once again cleared up the edema in his face and neck and keeps working hard to get everything circulating again, he smiles, looks at us, cries and "talks". We have been doing a lot of reading to him. Anything Dr. Seuss is a definite favorite of ours and we think it is a favorite of his too.

This is a hard day for me, Judy (saca). This is the first day that I have not been with him. I came down with a cold and that could be the worst thing for him. So, Joel is pulling dad duty and enjoying being over there without me telling him what to do. HA! I just talked to him to check up on the little man and he said that he and Elijah were doing "the limbo" under the crib. (Those of you who may not know what that is.....you walk under a pole and keep lowering the pole to see how low you can go). I think Elijah is winning!!!

Joel's mom and dad are coming today to give us a break. We will be going back to Ness City for a day or two to take care of business and pay bills and then we will be back in Wichita. I think Elijah's Grams will enjoy reading him stories while his Papa sleeps in the chair.

Thank you so much for your continued prayers for us. We had a friend write the following to us: "When Moses was weary the Lord provided those who would lift his arms so the battle could go on. Your prayer warriors, and there are MANY, are holding up your arms so you can press on." What a wonderful thing. We are so grateful for those warriors holding our arms up for us. Elijah is grateful. He is such a fighter. We had a nurse tell us a few nights ago that she had never seen a little baby fight like Elijah. The night we came in she said that they all thought there was no way he would make it a few hours. How amazed we are that God has spared Elijah once again. Pray that this week of Easter is a significant week for Elijah. That God will once again show His Mighty POWER over death.

Elijah has received cards, notes and even a little friend in South Africa made him some pudding. She wanted to do something for him and her first thought was a cake. Her mother talked her out of a cake and she made pudding instead with special sprinkles for Elijah. Thank you so much Abigail. All the children praying have such great faith. This is teaching us a great deal. Thank you for sharing our journey and for including your children in this journey. Keep praying!

Surrounded in love,
Judy (Saca), Joel and Elijah