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Unexpected Chapter

February 23, 7pm:  Ellie is doing really good.  She seems to be almost back to normal.  She is eating great and really regaining strength.  Physically, she is doing wonderfully.  On the emotional side, she is having a little bout with nightmares.  She wakes up a lot crying.  She can't remember what she dreamt, only that it was sad.  We are hoping that that passes soon.  She has been through so much, I can only imagine what goes through her brain!

We are extremely grateful that she is doing much better.  They have decided that since she has regained so much of her strength, they are going to take out her port.  That will happen on March 13th.  It's an outpatient surgery and shouldn't be too difficult.  I will be excited to have the port behind us!

Thank you for your continued prayers.  We are very thankful to be on this side of our latest health issue.  We are praying for no more complications for Ellie.

We are so very grateful for all of the support we have received.  It has truly been amazing.  I know we don't deserve such generousity and kindness, but we are very thankful to be blessed with it anyway.  You all have been so good to us.  We are appreciative and humbled.  Thank you.

"I trust in God's unfailing love forever and ever."  Psalms 52:8

 

February 18, 11am: Ellie is doing really good right now.  She simply gets tired quickly.  We are trying to get back into a routine a little.  She went to daycare on Monday for two hours so she could attend the Valentine's Day party.  Those two hours completely wiped her out.  Yesterday, she went back to preschool for the first time since she got home from the hospital.  Those 3 hours exhausted her too!  It will just take some time to get her strength back.  Today, we are recouperating and allowing Ellie to rest and get stronger.  We are also having a little issue of Ellie's system not quite working correctly since the abdominal surgery.  She is on some anti-diarrhea medicine and, hopefully, that will improve her condition soon.

The picture I am including today is of Ellie in her room.  Several of you asked me to post a picture of Ellie's room.  You said you wanted to see the paint job Ellie and I did when we got home from the hospital.  It is so very sweet of you to follow Ellie's world so closely.  I am constantly humbled by the generousity and kindness of all of you.  It's amazing to me.

Thank you for the continued support.  We are so incredibly blessed.  The verse today is Ellie's memory verse from Sunday School: "I am the good shepherd."  John 10:11.  We are so very thankful that God is her shepherd and is keeping a faithful, watchful eye on her.  We know a good shepherd keeps his flock close and constantly watch over his sheep.  We are praising God because He is Ellie's shepherd!

 

February 15, 5pm: Ellie is doing remarkably good.  She has had a couple of great days.  She is eating well and getting her strength back.  We even ventured out today to go to church and Sunday School.  Ellie loved being back with some of her friends.

Thank you to everyone who has helped us through this leg of our journey.  It has been quite an incredible few weeks and we know we could not have gotten this far without prayers and support.  We are very grateful.  Thank you!

And we certainly thank God for allowing Ellie to survive this crisis.  He has been so good to us.  We praise Him!  A line from one of the songs we sang in church today was, "Who am I that He would know my name?"  That really struck me because it made me think that out of all of the billions of people that are alive, God knows Ellie's name.  Not just knows her name, but knows everything about her.  Not just knows everything about her, but made her.  He knows every little detail about her and is with her every single minute.  That is amazing.  It's too much to even comprehend.  But how reassuring and comforting it is to know that He loves her with an everlasting love and will never leave her.  It's incredible.

"I will not forget you.  I have inscribed you on the palms of my hands."  Isaiah 49:15

 

February 12, 11pm: Ellie had the best day she has had since surgery today.  I think we are over the hump.  She is really doing well.

We went to Omaha today to see the surgeon and he thought she was perhaps a little behind on recovery, but he said that she had major surgery and it would simply take awhile to recover.  He said that the surgery was a lot for a 30-pound 3-year-old to deal with.  He felt she looked a little too skinny and a little pale, but he wants us to just give it time

So, that's what we will do.  We will continue to give Ellie TLC and get her stronger.  I was very relieved to hear that nothing was wrong with Ellie.  We simply need time to recover.  I think that's good news!

Here is Ellie today at the hospital.  I find myself saying so many prayers while I am walking through the Children's Hospital.  Everywhere you look, there is a little boy or girl who needs some type of medical attention.  It can be overwhelming.  Today as we walked by the surgery waiting room, I saw a mom break down as she waited for news on her child who was in surgery.  I was sitting in that waiting room just a couple of weeks ago crying too.  We saw kids in wheelchairs, kids on oxygen, kids being wheeled in and out of the surgery area.  It is truly an amazing place.  On one hand, we are so thankful the Children's Hospital exists, but on the other hand, it's too bad that it has to.

Each time I am at the hospital, I am thankful for the issues Ellie has.  It always could be so much worse.  We will take the burden we have been given and carry it gratefully.

We are thanking God tonight for allowing us to have Ellie one step closer to recovery.

"When you search for me, you will find me; if you seek me with all your heart."  Jeremiah 29:13

 

February 11, 9pm: I think Ellie has begun to turn the corner and is on the road to recovery.  She had a good and bad day.  She goes back and forth between being good: walking, eating, alert... and bad: no appetite, lethargic, temperature....  She went back and forth between those two all day.  But, the low times were not as low as they have been.  She wasn't as bad as she has been the last few days.  In fact, I didn't give her any pain reliever today.  That is the first day without that since we got home from the hospital.  Here is Ellie after her bath tonight.

I am very excited we are going to the doctor tomorrow.  I am anxious to see what he says.  I will certainly update when I am back home tomorrow night.

As always, thank you for your continued prayers.  We are blessed to have our prayer warriors!

For inspiration tonight, please read the poem that Judy Mullins posted on this site under the comments.  It is beautiful.  Thank you, Judy! 

 

February 10, 11am: Thank you so much for your prayers for Ellie.  We certainly feel them! 

I did talk to the surgeon yesterday and he put Ellie on a different medicine.  It seemed to really do the trick.  Ellie was walking around, laughing and eating.  It was quite a turn around.  Here is a picture of Ellie during that time.

But, she quickly began to get lethargic again and started to spike a fever.  Although she was still on the new medicine, it didn't seem to help anymore.  We watched her fever through the night and it seems to be back under control.  But today she is very lethargic and has no appetite again.  In fact, she and I were going to go visit her preschool class today so Ellie could attend the Valentine's Day party.  Ellie said she didn't think she could handle it.  She was having trouble standing and fell a few times when she tried to walk.  So we just dropped off the Valentine's for her classmates and went home. When we were at the school, I thought Ellie would get excited and want to stay, but she just said, "Please take me home."

One thing that hurt my heart a little today: when Ellie needed to take some medicine, she said to me, "I wish I was a different kid so I didn't have to take so much medicine."

We will continue to keep the faith that Ellie will get stronger.  I will be talking to her surgeon again today and she sees him on Thursday.  We will just continue to take good care of her until then.  It is going to be 60 degrees here in Nebraska today, so Ellie and I will get some time outside.  Perhaps some fresh air in her lungs will do her good.

I know we are dealing with some issues here, but I am still so grateful.  Our situation could be much worse.  If Ellie's intestine had burst, we would have a very sick child.  Or we could have had a reoccurence of cancer.  So we will take the symptoms we have and be grateful it is not worse.  I know that Ellie will turn the corner and be back to her perky self soon.

I certainly believe in the power of prayer and I thank you so much for your prayers.  We are blessed by you!  I keep thinking of one of my favorite verses, "Be still and know that I am God."  I know that God is in charge here.  He has the steering wheel and He will lead us out of this small valley.

"Do not let your hearts be troubled and do not let them be afraid." John 14:27

 

February 8, 6pm: I apologize for not updating for a few days.  I kept waiting for some better news to share.  Ellie actually is still very weak.  She cannot seem to recover from her surgery and her stay in the hospital.  She doesn't have an appetite and certainly isn't getting enough calories.  I am trying to sneak them in however I can.  Our kitchen is stocked with protein shakes, malts, Boost, Ensure, PediaSure... anything to get some calories in Ellie.  But she always takes a few bites/sips of things and then says she's full. 

She is scheduled to have a follow-up visit with our surgeon on Thursday.  I am going to call him Monday morning and see if we can get in sooner.  I'll keep you posted on that.

Here is a picture of Ellie with some sweet things she received from her Sunday School class.  The class made signs that said, "God Bless Ellie",  "We Love Ellie", and "Get Well Ellie".  All of the kids signed them and they took pictures of the kids holding up the signs.  Ellie received the signs and the photos in the mail.  Ellie loves the pictures and carries them around all day.  When she sleeps, they are on her nightstand.  Thank you so much to the preschool Sunday School class at Christ Lutheran!  It was a very sweet gesture and Ellie loves it!

Thank you so much for your prayers and support.  I went to watch Lexie dance this weekend at a ballgame and I was stopped every few feet by someone asking about Ellie and telling me they were praying for her.  It is an amazing feeling to be so enveloped by well wishers.  We have certainly been blessed with an incredible network around us.  Thank you!!

We will keep you updated on Ellie's strength and her recovery.

"You armed me with strength for battle."  2 Samuel 22:40

 

February 6, 2pm: Ellie is doing good.  She is just so weak and frail still.  She doesn't seem to be recovering as quickly as they said she would.  Her surgeon felt that by Thursday (yesterday), she would be well enough to go to preschool.  She is not close to being able to go anywhere.  One thing we are dealing with is that she just doesn't have much of an appetite.  Nothing sounds good to her.  Whenever anything does sound good, we will run to the grocery store and grab anything she wants.  But then she will take one bite and be done.  I am scared to weigh her because I think she has actually lost more weight.  It's hard to bounce back when you aren't eating! 

This picture shows Ellie last night on the way to bed.  We were heading upstairs when I got sidetracked with one of the other kids.  When I turned back around, Ellie was asleep on the stairs.  She gets tired very easily!

Thank you for your continued prayers.  I know God will see us through this.  I am prayerful that Ellie will begin to get her appetite and strength back. We have faith that she will begin getting stronger very soon.

"And who of you by worrying can add a single hour to life?"  Luke 12:25

 

February 4, 11am: Ellie seems to be stronger today.  She is talking a lot more and much more animated.  She is still quite weak, but certainly better than she has been.

The picture today is of Ellie among some of the cards she has received from other children.  I love the things that Ellie receives from other kids because they are so heart-felt.  Having a child write, "Ellie, Jesus loves you!" in sweet handwriting is so touching.  Ellie loves these cards and notes.  She has me read them to her over and over. 

Several parents have told me that their children pray for Ellie and that it is so much different for the kids than praying for an adult who is sick.  When it is "one of their own", children are more affected.  I would love to think that God might use Ellie's illness to help other kids talk to Him more in prayer.  It would be wonderful to have God use Ellie in that way.

Thank you so much to Ellie's classmates at Messiah Lutheran Preschool for all of the cards.  Ellie loves them!  Thanks to Christ Schools for the packet of notes and the book.  They are very moving and precious.  Thanks to Patty and Ellie's friends at daycare for Ellie's "Get Well" book.  She loves to look through it!  And thank you to the neighborhood kids who have walked over with gifts, cards, and flowers for Ellie.  What an incredible neighborhood we have moved into!

God has surround Ellie with such an incredible network.  We are very appreciative.

This morning I am also so thankful that Ellie is only dealing with the recovery of this surgery.  Last January when she had her tumor and kidney removed, we helped her heal from that surgery with the knowledge that she would soon start radiation and chemo.  It was a bit daunting.  This time, we know she only needs to recover from the surgery and then simply get stronger.  It's not nearly as overwhelming.  I have to tell you, when we were in the hospital last week and they were doing tests to figure out what was wrong with Ellie, I just kept praying that it not be cancer again.  The thought of starting radiation and chemo again is almost more than I can bear.  I cannot imagine putting Ellie through everything again.  I thank God that we don't have to.

God has truly been so amazing to us.  We are blessed beyond belief.  I am so thankful to all of you for your support, prayers, thoughts, notes, cards, ...  thank you!!

This verse was in one of the cards the kids sent, "...He who watches over you will not slumber."  Psalm 121:3

 

February 3, 1pm: Ellie is a little better today.  Still very weak.  But her spirits are better. She is still struggling to walk, but she is willing to try more than she was yesterday.  Ellie lost about 5 pounds last week.  I know that doesn't sound like much, but when you are 30 pounds to start with, that's like losing almost 20% of your body weight in a week!  It will just take her some time to recover.  

I told her I thought we needed a fun project to make us feel better so she and I decided to paint her room.  She has been wanting us to paint her room since we moved in in August.  We had all of the supplies and were just waiting for some time to do it.  With us being home all week to take care of Ellie, we have nothing but time!  She got very excited about the idea of painting her room and it really seemed to make her feel better.  Here she is painting away.

Thanks so much for your continued thoughts, prayers and support.  It means the world to us!  I will update later today to let you know how she is.

Allow me to share with you a quote my friend Sara sent to me today:  "The will of God will never take us where the grace of God cannot protect us."

 

February 2, 10am: Ellie is doing good.  She is just so weak.  After being so sick for 3 days before she went to the hospital and then laying in a hospital bed for a week - she is just fragile now.  She also didn't eat for 5 days in there.  She is so thin and weak.

She needs to walk, but she doesn't want to.  The doctor told us she needs to be up several times a day walking.  She cries whenever we try to have her walk and she tells us her legs are too tired.  We are slowly working on getting her stronger.  The doctor has told us that she will need this week to recover and we are planning on just taking care of her this week and building her back up.

On a positive note, the rash on her tummy is better and doesn't seem to be bothering her.  And the rattling in her lungs is much less. 

Now that things have quieted down a little, allow me to express my gratitude to all of you for everything you have done for us over the last week.  We have received so many calls, e-mails, cards....  it has been amazing. 

And, of course, thank you for the prayers.  We feel so uplifted.  It has allowed us to simply focus on Ellie and not worry.  We know we are enveloped in prayer and it allows us to deal with the task at hand.  In fact, we had several nurses tell us they enjoyed coming into our room at the hospital because we were so calm.  They said they were used to working with stressed out parents.  We could be calm because of the prayers that surrounded us.  We were also calm because we know that God never left us.  He held Ellie in His hand through all of this.  He knew she was going to have this set-back.  In fact, He knows how this story is going to end.  It is not for us to second guess, worry, be stressed....  it is our job to simply trust in God and believe in His plan. 

And we do trust Him.  We know God only wants the best for us and will guide us down the right path.  We trust Him and His plan for us.

This verse conveys that wonderfully.  It was sent to Ellie by a sweet little girl named Emma.  Ellie received it in the mail written on pretty pink paper.  Her mom said that Emma picked this verse out all by herself and wrote it out for Ellie in her best penmenship: "Never will I leave you.  Never will I forsake you."  Hebrews 13:5

 

January 31, 10pm: We have Ellie at home and she is doing pretty good.  She seems so fragile and weak.  She is very thin and she tires easily.

She also has developed a reaction to the surgical tape they used over her incision.  Her tummy has broken out in a red rash that itches her terribly.  There isn't much they can do for her.  They took the tape off, but don't want us to use any lotions because they could seep into her incision and cause infection.  We have a prescription for something she drinks every 12 hours.  That doesn't seem to help a whole lot and it seems to wear off too quickly.  We are hoping her rash is better tomorrow. 

I will write more tomorrow.  Thank you for your prayers and support!

 

January 31, 10am: The doctor just left our room and has released Ellie to go home.  Her temperature broke during the night and she doesn't seem to have as much rattling in her lungs.  I had her up and walking about four times this morning.  That also seemed to help her.

Here is a picture of the kids this morning after Tom and the older kids arrived at the hospital.

We'll update after we get home today and let you know how Ellie's homecoming goes.

Thank you so much for your continued prayers!!

 

January 30, 5pm: Just a quick update: although we were hopeful that Ellie could go home tonight, she will stay in the hospital one more night.  She has a fever she cannot seem to break and she still has the rattling in her lungs.  They felt one more night would be beneficial. 

We, of course, want whatever's best for Ellie.  So I will stay with Ellie in the hospital tonight.  Tom just left for Lincoln to be with our other kids.  We have been taking turns staying in the hospital each night.  It takes a bit of juggling to have one child in the hospital in Omaha and two others going to school in Lincoln.  Each night, one of us leaves and attends games and performances that the older kids have and then we take them to school in the morning and head to Omaha.  Each day Tom and I have spent the day with Ellie.  The next night, the other parent heads to Lincoln.  We are looking forward to rejoining our family together this weekend!

Here is a picture from today.  My good friends came  to Omaha today and stole me for lunch.  It was very nice to be out in the "real world"!  Thank you Julie, Sara & Vicki!

I will update later tonight.  The doctor will be stopping by later to give us an update on Ellie's progress.

 

January 29, 11pm: I am sorry I have not updated yet today.  We had a very big day! 

First, Ellie's little system is working.  Her reattached small intestine seems to be performing.  The doctor was happy with all of the "stuff" coming out of Ellie.  Because of that, he allowed her to start eating some food.  Ellie had a blast picking out her menu.  She hasn't had solid food in 5 days and she wanted one of everything.  It was great to see her eat!

We also were able to get rid of the oxygen mask.  Ellie had been taking such shallow breaths and not getting enough oxygen.  Because of that, she had to have oxygen on for the last few days.  Today, she was doing much better on her own and was able to take it off.

She took four separate walks today, too.  We would walk around our floor and visit the playroom.  The walks really seemed to do her some good. 

If Ellie continues to improve at the rate she currently is, we may be able to go home Friday night or Saturday morning.  We are anxious to get home! 

I will update you more tomorrow.  Before I go, allow me share a great passage with you.  On this site, our friend Brent referenced it on a comment he posted.  We looked it up and really liked it.  Here it is:

"Do you not know?  Have you not heard?  The Lord is the everlasing God, the Creator of the ends of the earth.  He will not grow tired or weary, and His understanding no one can fathom.  He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."  Isaiah 40: 28-31

 

January 28, 10pm: Ellie is doing good.  She still has the tube going down her throat and cannot eat.  She doesn't like that.  And she still has the rattling in her lungs.  She seems to be coughing quite a bit more and is hopefully getting rid of some of the stuff in her lungs. 

One good sign: the nurses can hear gurgling in her abdomen.  We are waiting for her system to begin working and that is a sign that it is.

Here is a picture of Ellie with me tonight.  I actually celebrated my birthday in the hospital today.  Not exactly how I planned to spend this day!  But, I feel like I really got a gift.  I have Ellie on the road to recovery.  I just keep thinking of all of the positives: we caught this in time; we have an amazing surgeon who saved her life (twice!); we have one of the best Children's Hospitals in the country just down the road from us; we have an incredible group of family and friends who are helping us so much; ....  I could go on and on! 

I know that we are truly blessed.  That may sound strange coming from a mom of a child who has had two major surgeries before her fourth birthday, but I feel so incredibly blessed.  Thank you to all of you who are leaving comments for us on this site.  I love reading them at the hospital.  They truly give us strength.  And for all of the phone calls, e-mails, texts, ...  we are humbled by all of you who have truly shown us what it means to reach out to others.  We are very grateful!

"For You are my hope, O Lord God; You are my trust." Psalm 71:5

* An answer to prayer!  I was just finishing typing this and ready to hit "Publish", when Ellie's surgeon came in and examined Ellie and decided to take out the tube going down her throat.  That tube was so irritating to her.  We are thankful to have it out!  Ellie should get a great night's sleep now.  I'll update tomorrow.

 

January 28, 2:30pm: Just a quick update: Ellie is doing very good. She is much more alert today. Below is a picture of her from this morning. We took her out for a ride around the hospital in a wagon.

The only concern they are having right now is that they want to keep Ellie's lungs clear.  They can hear a little rattling going on in there.  They are having her blow bubbles to keep her taking deep breaths.  They also want to have her sitting up as much as possible and even walking.  We did walk around the room a little bit and Ellie didn't like it at all.  We will try again later.

The other thing we are dealing with is that Ellie has a tube going through her nose and into her stomach.  They are pumping out all of the fluid that had accumulated in her system when her intestine was blocked.  Because of that, Ellie is not able to eat or drink anything.  She is starting to ask for some of her favorite foods and cannot understand why we won't feed her.  We are hopeful that she can get rid of that tube later on tonight or tomorrow morning.

I will update tonight.  Thanks for your continued prayers and support!

 

January 27, 10pm: Ellie had a very restful day. She is on morphine and was able to sleep most of the day. The surgeon came in and felt she was doing very well as far as recovery. We now need to allow her time to heal and allow her body time to begin "waking up" as the nurses say. Basically, we need her intestines to wake and begin working. They need to see that her rejoined intestine will perform the function it needs to and that food moves through her body. The doctor told us that all of that will take quite a bit of time. Ellie will not be able to even start eating or drinking until at least Thursday. And she will be very sore for the next few days too.

I wanted to share a few photos with you from the last 24 hours:

Ellie in the ambulance on the way to the hospital.

Wheeling her away for surgery.

After surgery.

Mustering a smile tonight.

Ellie is being remarkably brave about everything. She is letting the nurses and doctors do whatever they need to do without complaint. I am, once again, amazed at her courage.

We will continue to update tomorrow. Their goal is to get her up and walking. That seems like quite a feat right now, but I am sure she will be much more alert and strong tomorrow.

I cannot tell you how enveloped in prayer we feel. I think you have managed to surround the entire hospital with your prayers. Thank you. We know we could not face any of this without, first of all God, and then without the support of all of you. It is more meaningful to us than you will ever know. We are extremely blessed!

If you look at the left hand side of this website, you'll see the verses we found for the hospital room we had for Ellie's last surgery. This time she is in room 623. It proved to be a more difficult task to find an appropriate verse for that number. We decided to get creative and transpose numbers. We were then able to claim Psalm 23:6: "Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever."

January 27, 6am: We had an unexpected day yesterday. We went to our doctor to see what he could figure out with Ellie's vomiting and tummy aches. He sent us to the hospital in Lincoln. Through a series of tests, it was discovered that Ellie had an obstruction in her small intestine. They wouldn't know more until they did an exporatory surgery. It was decided that we would head back to Omaha to see the surgeon who performed the surgery to remove her tumor and kidney. They felt that the obstruction had something to do with scar tissue from that original surgery and wanted that surgeon to take a look.

They decided to move Ellie by ambulance from Lincoln to Omaha since she was already hooked up to a few machines. I ran home to quickly grab an overnight bag and come back to ride in the ambulance with her. One funny thing: I asked Ellie what she wanted me to bring from home for her and she said, "Just fireworks." Not sure where that came from, but it certainly did lighten the mood!

By the time we got Ellie in the ambulance, she was in a lot of pain. She was going down hill quickly. They had put a tube down her nose and into her stomach and they where pumping out quite a bit of green-ish black liquid. She had bile backed up in her system. They had been pumping it out for hours and there was still more. She handled the ambulance ride pretty well, except that it was very bumpy and she was in pain.

When we arrived in Omaha, we were met by Ellie's surgeon. We have great confidence in this man and trusted what he had to say. He quickly examined Ellie and said that she needed surgery right now. This was about 7pm. He said there is a saying in medical school: "Don't ever let the sun set on an abdominal obstruction." So Ellie was prepped for surgery.

Tom and I could not believe we were going through this again. It was very deja-vu. To be at Children's Hospital and to be getting Ellie ready for surgery again was something we would have never expected when we started the day.

We stood in that same hallway right outside of the surgery area and said goodbye to Ellie again. They promised to take good care of her. I had to watch them wheel my baby away again for surgery. I just couldn't believe it.

The surgeon appeared about 90 minutes later to say the surgery was over. He told us what he found out: Ellie had some scar tissue from her original surgery and a band of scar tissue had wrapped itself around Ellie's small intestine forming a loop with the intestine. The scar tissue had pinched off the intestine and it was completely dead in that loop. He had to cut out 2 feet of her small intestine (he said it was about 1/4 of her entire small intestine). He re-attached the two ends together. While he was in there, he also took out her appendix. He said the appendix has no known function and he wanted to try to minimize Ellie having future abdominal surgeries by removing her appendix.

Our surgeon told us that we were very lucky that we caught it so quickly. He felt the intestine was close to bursting. If that happened, it would leak bile into her body and we would have had a very sick child.

We were then able to go see Ellie and she actually looked good. Her color had been so bad before the surgery and she was in much pain. She now looked much better and was resting comfortably.

She had a really good night. She is, of course, on quite a bit of pain medication and mostly sleeping. About 2:30am, she decided she had had enough of the tube down her throat and she pulled that out. So the nurses had to put it back in, which Ellie didn't like. But otherwise she had a restful night.

We were told to expect about a week's stay in the hospital. They want to make sure that Ellie's body is functioning well and that her newly joined intestine is performing properly before they will release her.

I don't have any pictures for you today because I am in the hospital on a laptop. But I will get some up here soon. I will also continue to update you on Ellie's progress.

Thank you so much to our family and friends who continued to text and call us all night. We are so thankful for the prayers and support! We thank God that we caught this quickly and that it appears Ellie will have a full recovery.

Thank you to our friend Rhonda who sent this verse to Tom last night as we waited for Ellie's surgery to be done: "Lord, you have assigned me my portion and my cup. You have made my lot secure. The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance. I will praise the Lord, who counsels me, even at night my heart instructs me, I have set the Lord always before me, because He is my right hand, I will not be shaken." Psalm 16:5-8

 

Posted on Tuesday, January 27, 2009 at 07:19AM by Registered Commenter[Your Name Here] | Comments74 Comments

Reader Comments (74)

I can remember that when Jon was diagonised with Diabeties he wasn't even 3 years old at the time. He was 30 lbs as well and lost 5lbs before he started to gain the weight back. I was so glad to see he put the weight back on. I know that Ellie will gain back the weight as well. Kids rebound better than we do as adults.

Rita

February 4, 2009 | Unregistered CommenterRita Offutt

We will continue to keep Ellie in our prayers and that soon she will be asking for cookies, ice cream, pb & j sandwiches, chicken nuggets... Ob boy, now I'm getting hungry!! Get better Ellie -- we love you!
Amy and family

February 9, 2009 | Unregistered CommenterAmy Killham

Volk family here's a poem I wanted to share with you.
I pray it brings you some comfort.

WAIT
by Russell Keifer


Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate
And the Master so gently said, “Wait.”
“Wait? you say wait’?” my indignant reply.
“Lord, I need answers, I need to know why!
Is your hand shortened? Or have you not heard?
By faith I have asked, and I’m claiming your Word.
“My future and all to which I relate
Hangs in the balance, and you tell me to wait?
I’m needing a ‘yes’, a go-ahead sign,
Or even a ‘no’ to which I can resign.

“You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
And Lord I’ve been asking, and this is my cry:
I’m weary of asking! I need a reply.”
Then quietly, softly, I learned of my fate,
As my Master replied again, “Wait.”

So I slumped in my chair, defeated and taut,
And grumbled to God, ‘So, I’m waiting for what?”
He seemed then to kneel, and His eyes met with mine..
and He tenderly said, “I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.
“I could give all you seek and pleased you would be.
You’d have what you want, but you wouldn’t know Me.

You’d not know the depth of my love for each saint.
You’d not know the power that I give to the faint.
“You’d not learn: to see through clouds of despair;
You’d not learn to trust just by knowing I’m there.
You’d not know the joy of resting in Me
When darkness and silence are all you can see.

“You’d never experience the fullness of love
When the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you’d not know the depth of the beat of My heart.
“The glow of my comfort late into the night,
The faith that I give when you walk without sight.
The depth that’s beyond getting just what you ask
From an infinite God who makes what you have last.

“You’d never know, should your pain quickly flee,
What it means that My grace is sufficient for thee.
Yes, your dearest dreams overnight would come true,
But, oh, the loss, if you missed what I’m doing in you.
“So, be silent, my child, and in time you will see
That the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still. . . Wait.”

I will be flying today and while I'm just that much closer to Heaven, I'll be praying for Ellie. The poem sent by Ms. Mullins is beautiful. I pray it gives you some peace of mind.

February 11, 2009 | Unregistered CommenterMary Smith

I hope that you will have a safe trip to Omaha and back tomorrow. The poem is a great comfort to read.

Rita

February 11, 2009 | Unregistered CommenterRita Offutt

Debbie:

I am thinking and praying for all of you. Miss Ellie Grace is an angel....her pictures are so adorable and I see God in her eyes. We will endure and transcend! Blessings....my 3 and 4 year old Sunday School class will be sending some wishes very soon.

February 12, 2009 | Unregistered CommenterCheryl Richardson

Volk family -- I can see by her pictures that she is improving! YEA! We will keep praying that Ellie gets stronger every day. Love from the Killham's!!

February 12, 2009 | Unregistered CommenterAmy Killham

Dear sweet Ellie,
We are so happy you are feeling better! We hope to see your smiling face at Patty's again soon. I know all the kids miss you. I miss seeing your sweet smile too! We will continue to pray for you and give thanks to God for healing you.
Hugs!
ox ox
Pam and Carly Leupold

February 15, 2009 | Unregistered CommenterPam Leupold

I'm so glad that Ellie is finally feeling better. Anything is possible with God on your side.

Rita

February 18, 2009 | Unregistered CommenterRita Offutt

Ellie, you are a piece of work! Truly, you are so loved by your creator. We're thrilled to hear you are gaining your strength back. I love your room. Were you the designer also? You did a super paint job.

Hope to see you soon in Norfolk!

Ron and Judy

February 18, 2009 | Unregistered CommenterJudy Kahle

Volk Family,
Hang in there, Ellie! You look so much better this week. Glad you are able to get back to your activities a little. Your room is really cool! You and your Mommy did an awesome job painting and decorating!

February 18, 2009 | Unregistered CommenterBruggeman Family

I love your room, Ellie. God Bless and keep you all,Pat

February 19, 2009 | Unregistered CommenterPat Kuhn

Ellie's room came out really neat. I'm glad that Ellie is getting back to normal.

February 19, 2009 | Unregistered CommenterRita Offutt

Ellie's room came out really neat. I'm glad that Ellie is getting back to normal.

February 19, 2009 | Unregistered CommenterRita Offutt

Tom & The Volk Family,

Glad to see & read that Ellie is doing much better. Know that we will keep sending our prayers from Texas.

Brent Flaskamp

February 23, 2009 | Unregistered CommenterBrent Flaskamp

WOW!!! Ellie, you are being so brave to go through chemo/radiation. And now with this little bump in the road. At least we know that your port will be coming out soon. That is very good news!!! I hope you know that my class and I will be and have been praying for you throughout your whole journey, and we will try to keep up the prayers and support.

February 23, 2009 | Unregistered Commenterkendra

I pray, "No more complications"!! That will be great for the port to come out!!
Pat

February 24, 2009 | Unregistered CommenterPat Kuhn

Debbie and family -- Your family was on my mind at our Room211 service on Sunday. The band played "Your Grace Is Enough" and I remembered you saying that it was Ellie's favorite song. (Plus it's her middle name! Cool!) I was thinking about how much you have all been through during the song. And then, after church I saw Lexie, Mitchell and Ellie! What great kids you have -- you should be so proud of them! God is so good. I hope you all have a wonderful spring and Easter season celebrating all of God's amazing miracles and the gift of LIFE!!
Peace, Amy, Rudy, Maggie and Jake

February 24, 2009 | Unregistered CommenterAmy Killham

OK, you two. Enough is enough, right? Katie and I just finished reading your latest entries and we want you both to know how much we love you and that we are thinking of you. So happy to hear that Ellie is feeling a bit stronger. She is an inspiration to us all, as are both of you. We love you. We are sending all positive thoughts your way from Minnesota.

Love, Jon, Katie, Bryn, and Paige

February 24, 2009 | Unregistered CommenterJon Kahle

Ellie,
We are glad that you are doing better, and continue to pray for you. We love the pictures of your smiling face and beautiful eyes.

Love,
The Pollocks

February 27, 2009 | Unregistered CommenterThe Pollocks

Ellie - I know your birthday is soon approaching! Happy Early Birthday! I'm hardly ever early! I love your new room and it must just make you smile to know that you helped paint that beautiful pink! I am glad you are feeling stronger every day. We have been praying for you and your whole family.

Take care sweetie!

Suzie Feist and family

March 1, 2009 | Unregistered CommenterSuzie Feist

Happy Birthday to you, Happy Birthday to you, Happy Birthday dear ELLIE, Happy Birthday to you. God's blessings to you, God's blessings to you, God's blessings dear Ellie, God's blessings to you! I will think of you when I "knock on God's door" this week. I was glad to see you today, you and Cali looked BEAUTIFUL in your birthday crowns. Have a great birthday week!!

March 1, 2009 | Unregistered CommenterRobin Kappler

Hi Volks,
We just wanted to wish Ellie a Happy Birthday! We're so glad you're feeling better. I hope to see some pictures on your website of you enjoying some birthday cake.

March 1, 2009 | Unregistered CommenterBecky Barry

Ellie & Family,
It has been a long time since I posted on your website. We remember you in our prayers every night. I heard about your "bump in the road" from my parents (Allan & Ruth). My Mom gave me your Great Grandma Addie's Christmas letter to read----and thankfully it had your website on it (as I had misplaced it.) So I'm updated on all your happenings, and we are so grateful you are recovering well from your surgery. I think your Mom has inherited her inspirational writing from the Scheve side. No doubt you too, Ellie, will be a great writer some day! I love your pink room. On March 5th, Rick celebrated the 1st Anniversary of his first bone marrow transplant---and will celebrate the anniversary of his second bone marrow transplant on May 30th. Wow, time has flown for all of us this past year, hasn't it? We've had some losses of friends too, and that is hard. But you know what? The greatest gene you and your family have inherited is the gene of "faith". Praying for healing and strength and sweet dreams.

March 9, 2009 | Unregistered CommenterRick & Rene' Leppert

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