Wed. 4/30 - update

Moses answered the people, "Do not be afraid. Stand firm and you will see the deliverance the LORD will bring you today. The Egyptians you see today you will never see again. The LORD will fight for you; you need only to be still. (Exodus 14:13-14)

A dear friend from Edna sent us this verse today. We know it was from the Lord because it was exactly what we needed to hear. Today was one of the toughest days (emotionally) for us so far. This morning Todd was supposed to fly out at 6:30, but when I got to the hospital the nurse met me in the hall. I knew something was up by the look on her face. She said that Caed had started throwing up formula early this morning. That is not a good thing! The formula is going directly in through his J-tube (intestines). That meant that something was wrong for it to come all the way back up. The formula was also draining out his G-tube. The dr. ordered an x-ray, and it showed that the J-tube had moved up into his stomach. (they are guessing from the continual vomiting) About an hour later they informed us that we would be going back down to endoscopy for our GI dr. to try to reposition it. Normally each time we have been down there, it only takes 20-30 minutes for the procedure. This morning it was an hour and 1/2. As the clock moved, our worries grew. The look on our dr.'s face said it all when he walked out. He was very frustrated and said he was not able to fix it. I won't go into all the details, but now he just has a G-tube and they will begin trying to feed through it in a day or two. (starting back at 2-3 cc.) He said Caed's esophagus is VERY irritated! (again from all the vomiting) He has been on a heavy dose of med for that anyway. From what we understood, they will try a couple more things before talking more seriously about a possible transplant (in Nebraska). Todd's dad had a heart transplant in '95, so we know some of what to expect. However, the dr. said bowel transplants can be more complicated. They are also concerned with him being on his TPN (nutrition) for 2 months. The longer you are on it, the more likely it will affect your liver. Caed has been in a lot of pain today. I can't write about it. It's heart wrenching!! I also cannot write about the other things Todd and I dealt with today. I want so badly to believe all will be ok, but we just don't know. The verses in Psalm 139 have been a reminder that GOD knit his little body together in my womb (defected and all!). It is GOD who can unravel the mess that it's still in! We want a miracle SO badly! Please pray for the "new plans" to work. Pray that his stomach will begin holding the formula down and things can start healing properly.

Another verse has popped in my head over and over today:

In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. (Romans 8:26)

Right now...we do not know what to pray. Our strength is all but gone. I love this verse because it tells me that when this happens, the Spirit will step in and help. And with GROANS!! Not even our human language can express it. Thank you God that You are always with us even when we have reached the bottom and feel we can't go on!

Tues. 4/29 - update

Consider what God has done: Who can straighten what He has made crooked? When times are good, be happy; but when times are bad, consider: God has made the one as well as the other...
(Ecclesiastes 7: 13 - 14)

My heart is heavy and body weak! Today was a very difficult day. Caed was in pain a lot last night and again this morning. We went back out to Idalou around noon. He was ok for the first hour maybe. Didn't ever talk, but we're getting used to that. After a short while he wanted to just lay on the couch and rest. He fell asleep and slept there maybe an hour. Then he got up, walked quickly back to one of the bedrooms and lay down on the floor on a blanket. He closed his eyes and stayed there (asleep) for over 2 hours. When he got up, he came into the living room and just began crying. We tried to figure out what was wrong or what he wanted, but he would only cry. Then, he began screaming! Still no idea why or what was wrong. I picked him up and held him for awhile, he was still yelling. I can't even describe the feeling that was inside me. I was holding my little boy, but he WASN'T Caed! Not the Caed we've known for 4+ years. With him still in my arms, I carried him out to the back yard. My parents have a big water garden and it is so peaceful and soothing. The sign above the pond says, "By the still waters, He restores my soul." I was praying for just that. Caed calmed down and watched as the fish were being fed. With all of my being I wanted to STAY right there. But, I knew it was (past) time to get back to the hospital. Caed had been off his feedings the whole time. (dr. approved) As soon as we began loading the van, the screaming and kicking began. Normally, (before all this happened), Caed would have quickly been taken to a back room and spanked for that behavior. But, we are learning this is a major form of communication for him throughout all this. There is SO much fear, frustration, anxiety, anger, sadness, etc... built up inside him. We try not to acknowledge it (too much) and just let him "get it out." He continued screaming most of the way back to Lubbock. As I looked at him, I saw a different child. One that has been through such a horrible trauma. I want so badly to take it all away. I want him to be the "old Caed." (funny, silly, and happy) I'm not saying that he will never be back to that, but I do think we have a LONG road ahead of us (emotionally). He will never be the same. We will never be the same. Thank you God that Your ways are higher than ours. We don't understand all the "WHYS?"! However, I am convinced that God has such BIG plans for him. I don't fully know how all of this will play out nor how He is going to use this experience in Caed's life. But, never the less, we know it WILL be used! In the verse at the top it says, "Who can straighten what the Lord has made crooked?" For whatever reason the Lord has made Caed's life "crooked" right now. Not us, the doctors, or anyone can straighten this out. We cannot change what the Lord has determined! We just have to persevere and trust Him!

We know these days away are so beneficial for Caed. (emotionally as well as physically) Just pray for him as we have to leave each evening. I know he just doesn't understand. Also please pray that he does not get any more infections. One of the reasons we are able to leave the hospital each day is because he is no longer on antibiotics!

Reagan, Caed, and Xan watching over Caleb

"Big Brother" and "Little Brother" chillin' out


The Fam


Asleep on the floor of the bedroom


He is always exhausted after being gone for the day

Mon. 4/28 - update

Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But REJOICE that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.
(1 Peter 4:12-13)

Today began with lots of pain! He woke up this morning to it, and has continued throughout the day. We are not sure what the cause is...possibly his body over did it yesterday (the most walking, etc...he has done in 2 mos.) and he is just sore, or because of all the activity his gut is starting to "move" more, or.......? We have no idea. They did increase his feedings to 14 last night. We don't think that is the cause, but we just don't know. The pain got so bad and we had exhausted our "list" of meds he could have, so one of the NP's prescribed some Demoral. We didn't think he would even be able to use his time-away pass today because of the pain. However, he wanted to go SO badly. We knew we could play it by ear and come back to the hospital if it got unbearable. He did good today however. We came back out to Idalou. He fed the fish again, and mainly played with his cousin Xan. They played in the gravel, rode the jeep and the PPV, played down in the basement with musical instruments, played Wii, and watched some movies. A few times he cried out in pain or had to sit/lay to rest awhile. One problem we are having is that when it's time to go back to the hospital, he doesn't want to. I think it will either get easier and he will figure out our daily routine, or harder as we come out each day. But regardless, we are still seeing how beneficial is it for his body and spirit. Please pray that the pain he is experiencing is "good pain." It's hard to see him suffer and our minds always go back to March 1st. (the day this all started and the severe pain he was in) Also pray that the pain will lessen and eventually just BE GONE!! We were so encouraged yesterday and our hearts were overflowing with joy as we watched him be a little boy again. However, today has been very difficult. We made it through and know that there will probably be more days like it to come. We're just trying to look at it as "baby steps." (even though to us they are GIANT!) When we look back at where we were 2 months ago, he truly has made lots of progress! It's just hard when you're living it day by day. (time seems to go so slow)

Todd and Reagan flew in this morning. It was so good to have them back. Caed was very excited when they walked into his room. However, we are now seeing that Todd will only be able to be here with Caed on Mondays and Tuesdays. He will need to be in Celina Wed.-Sun. for the next month. My heart breaks and I can get so frustrated at the feeling of having to do this alone, but I know this is just how it has to be. The Lord has brought us this far, He will not leave us now. This past week with Todd being gone was hard, but not unbearable. (I am ready to crash tonight though!!) I know it was the Lord giving me strength, good night's rests, and providing my parents some extra time to come help out. I do not need to worry about what's to come. God will not put me in a situation without also providing me everything I need.

Thank you for your continued prayers and support. We are taking some big steps toward a FULL RECOVERY, and can't wait for the day we can post "We're finally home!"

playing the keyboard with Grandaddy


Caed wanted to find Zack the kitty so bad!
Nana finally caught him


Xan and Caed going for a cruise


Xan, Caed, and Mommy in the PPV


Xan and Caed playing beautiful music together
(not sure about the beautiful, but it was definitely
loud!)

Sun. 4/27 - update

Wow!! What a day we've had! THANK YOU GOD...not only was it good for Caed, but also for us. As soon as his day nurse came in this morning, she immediately pulled me aside, and asked me if I agreed about talking to the drs. about getting Caed a 4 hr. pass each day. She is very concerned about Caed's mental well-being. His doctors were very in favor of it. Although, it will be on a day-to-day basis. Each day he gets "unhooked" from his TPN (nutrition) at 2:00, so anytime after that will work. He also got off all his antibiotics today. He got a new "portable" drain (G-tube) and feeding bag. Making it easier to get around when we do leave. We left the hospital about 3:00 and drove out to Idalou to Nana and Grandaddy's house. It was so good for him! He fed the fish in the pond, played golf, went down in the basement to play air hockey, rode in the jeep, played soccer and baseball, and went for a ride down the street in the wagon. He did not speak a lot today, but we knew he was HAPPY! I think this was such a good idea, and we thank our wonderful nurse for caring enough about Caed to suggest it. We know Caed's physical illness is a long way from being over, but this "therapy" today was so beneficial for his spirit. (just as important!!) Words cannot express the amount of joy that is in our heart today! God is giving us a glimpse of many days ahead. (smiles, play, laughter, and BEING HOME!)

I told you about a special package we received yesterday. It was from a friend of my parents. He is a football coach in Alpine, TX. He had shared some of Caed's story with the team and the guys wanted to send Caed a card. They all signed it and also sent him an official Alpine Bucks football (and poster of the team). It meant a lot because we don't even know them (nor they us). Thank you for thinking of Caed! You definitely made him smile. I hung the poster in his room along with the card from all the players. Caed loves teenagers! Hope you have a great season next year. We'll be cheering you on from a far! (thank you Andrew for your initiative...and we will pray for your leg, etc.... as well)

Also, thank you to the 7th graders from Trinity High School. Your sweet, sweet teacher brought your cards to us today. I was VERY impressed! Caed loved all the pictures you drew. Thank you for all you wrote. Again, it means so much when people you do not even know do things like this. We will never forget it!!

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, TO HIM BE GLORY in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
(Ephesians 3:20-21)


Caed with his Alpine High School football


getting ready to leave the hospital


playing while Grandaddy "rigs" his pole


surprising Mitchell (great-grandmother)


feeding Nana & Grandaddy's fish

Golf video

More pics of our fun day

playing golf

beating Nana at air hockey


enjoying the slide


playing baseball at (cousin) Logan's house


Visting "Mr. Russ" and his kitty Patches

Sat. 4/26 - update

Not too much to report today. Caed woke up this morning w/ some pains. (no vomiting though) They are still draining his G-tube continually, so that is helping him not throw up. They increased his feedings to 10 cc., which explains the cramping. When they increase it, he usually hurts for awhile until his body gets adjusted. We went outside some this afternoon and enjoyed the beautiful weather.

My mom, Megan and I (along with Xan and Caleb) went out again this afternoon. We went to eat at an actual "sit down" restaurant. (I know...it's shocking!) I surprised myself at how little I worried about Caed or experienced the "guilt" from being away. It was nice again to get out during the day. Thank you Daddy (again) for allowing me to do so! We went and picked Caed up some games (Connect 4, Hungry Hippos, etc..) I know he will be very excited.

Sorry it's so brief tonight. I am in a hurry to get back up to the hospital. Will tell you more about a special package we got in the mail today along with some pictures (in tomorrow's blog).

We love you all....................!

Fri. 4/25 - update

This time of year always brings back vivid memories for me (especially here in Lubbock with the dust and wind) 2 words.....track season! Didn't particularly like it, but none the less participated in it for 6 years. Some events varied, but the ones that stayed the same were the relays. A very important element to those races was the "passing of the baton." Countless practices were centered strictly around that very thing. If you dropped the baton, you were out of the race regardless of how fast you were running. Now, you're probably wondering what a relay race has to do with Caed and our current situation. It's an illustration my dad has used numerous times to describe the way the Lord provides. God uses His children to be vessels to provide for others in times of need. We have found ourselves in that place now. We are in awe at how the Lord continues to provide for us (in various ways) through the body of Christ. YOU are our fellow teammates in an exciting race called life. YOU have the baton and are handing it off to us. We have been reminded and challenged to run hard until we see the next runner (in need). It is then that we hope to "pass the baton" onto them. We are so blessed to be running this race with all of you! Let's finish it well...

I have fought the good fight, I have finished the race, I have kept the faith.
(2 Timothy 4:7)

This morning was very difficult for Caed. He began throwing up as soon as he woke up and continued non-stop for several hours. Dr. G came in and wanted his G-tube (stomach) drained continually. She also stopped his intestinal feedings for a few hours. (just to give his system a break) The vomiting lessened as the day when on. She also wanted an x-ray of his stomach. (to make sure nothing "new" had happened in the last 48 hrs.) She told Caed that he is really making her use her brain! (his condition is not textbook!) Currently, his intestines seem to be ok, but it's his stomach now that is having problems. She reminded us that his condition has been going on since birth. But, it took this trauma to really discover it. She said his digestive system is healing in stages. It will probably take a very long time for it to be back to "normal." (maybe even years) They have a plan in place right now with the feedings and drainings. Please pray that his little body can slowly start healing properly. Pray for patience for us. It's easy to get discouraged. There might be several good days and you feel like everything's getting back on track. Then, some difficult days like this week occur, and it sure sets you back. Pray that we will learn to take one day at a time and remember it will be a long process.

Today I was able to "get out" for a few hours (during daylight!! ha!), and boy was it nice. Of course, my mind was on Caed the whole time, and I felt guilty for being away. However, it was a good (needed) time with my mom. We went shopping and did lots of talking. Mother, thank you for that time! I have missed it. Also, thank you Daddy for staying at the hospital and allowing me to have a break.

Todd and Reagan are doing fine. Todd has a lock-in tonight and Reagan will be sleeping over at a good friend's house. She was very excited! I know this has been a special time for just the two of them to be together. However, we are VERY ready for them to get back to Lubbock.



Winnie-the-Pooh made a surprise visit to
Caed's room today.

Thur. 4/24 - update

There is no such thing as "random suffering" in the life of a child of God. Our sovereign God is a God of intent and purpose. He never does things capriciously! This means our trials and adversities - difficult , perplexing, and heartbreaking as they might be at times - are never "senseless." God's great purpose and plan for each of our lives embraces everything from minor irritations to devastating losses and setbacks. (Joni Eareckson Tada)

But I trust in you, O LORD; I say,
"You are my God."
My times are in your hands. (Psalm 31 : 14-15)

The questions still remain, "God, what is your purpose for this happening to Caed?" "How long will you allow him to suffer?" We don't fully know the answers yet, but are learning to TRUST in the One who does! We can see SO many things that are coming out of this experience already, and know that others may not be revealed for years to come. (kind of exciting!!) We couldn't possibly begin to share all the little ways the Lord is using this adversity for good. However, if it were one of us having to bear the burden (physically) like Caed is, maybe it would be easier. It's so incredibly difficult to have to WATCH as your child suffers. (and that literally is what we have to do....watch! There is very little we can do to help) The times my heart breaks the most is when he is in pain and all he can cry out is "Mommy!" To a child, Mommy and Daddy are there to "fix" any need that arises. It's excruciating when he is looking at me with tears rolling down his cheeks begging me to help ease his pain!! I want so badly to tell him it's going to be ok and that I can help him. I can't. It's in those times that I rub his forehead with a damp cloth and just PRAY!!!! Oh God....take this cup from him now! Today was one of those days for us. They decided to try a certain medication again (didn't work well the 1st time many weeks ago). However, I agreed to give it another shot. (many things have changed with Caed from 5-6 weeks ago) It didn't help. Caed experienced the severe pains for several hours this afternoon. The only thing that will help is time (to get out of his system). I was relieved to know that it was the drug (more than likely) causing the pain instead of an obstruction, etc...He threw up several (4) times again today. The dr. is concerned it might have some blood in it. She is starting him on some meds (that he was on before) for possible gastritis (irritation of stomach lining). They also want a stool sample to check for blood there as well. His feedings stayed at 8cc. So, other than the throwing up and the negative drug reaction, it was a pretty decent day.

This morning we were invited to a "Baseball Party" in the playroom. The Child Life Team puts together parties for the kids I think once a month. The room was decorated with everything baseball...had baseball music playing...had players from LCU and well as the head coach. Sonic donated hotdogs and drinks, and they had several games for the kids to play. Caed was excited to go and even wanted to take one of his own Tech baseballs (thank you Russ!) with him. He had fun at the party and even hit several balls (one of which came inches from knocking down a cart full of drinks...ha!) We always knew he had an arm. He played some games and felt great!! He even walked all the way back to our room (on another floor!). He has learned to push his pole by himself. He thinks he is "big stuff." On the way back, my mom and I noticed his strut was back. Normally he walks hunched over. He must have been feeling really well because he sure had a bounce in his step. Thank you God for a fun morning!!!! You have NO idea what it does for us when we see the "real Caed" for even a short moment. Gives us such hope!

Despite today being a pretty difficult day, I was very encouraged. He never threw up "blue!" Ate a whole hotdog! (at least half did come back up however), and had lots of fun at the party. By the way... just a quick word to all you moms and dads out there who get so frustrated that your kids don't eat enough or are "picky" eaters: Don't take it for granted!! Something we are learning daily. How we LONG for Caed to be able to eat something and totally KEEP IT DOWN!
Something so natural (eating), that we don't give it a second thought. However, when you loose the ability to do something as easy as digesting food, you have a whole new appreciation for it. Maybe that "one" little revelation for Todd and I is part of the answer to the question..."what is your purpose for this, Lord?" God, help us to see more answers daily!!!!



Who can ask for more...a Master's
cap AND the green jacket!
(Uncle Stan brought him back
this hat last week from Augusta)

*you will notice Caed's "TPN cheeks."
Despite eating nothing, he has gained
5-6 lbs. since being sick. They say it's just
one of the side effects to the feedings.



Caed getting an autographed bat from LCU head
baseball coach, Nathan Blackwood



2 of Caed's many "Child Life" girlfriends
(they are the ones who bring toys, etc...to the
kids in the hospital)



Playing a baseball game at the party



He has learned to hold his tubes and
maneuver his pole ALL BY HIMSELF!

Wed. 4/23 - update

For in the day of trouble He will conceal me in His tabernacle; in the secret place of His tent He will hide me; He will lift me up on a rock. (Psalm 27:5)

I know this phrase will sound familiar, but "it wasn't necessarily a bad day, but not great either." Todd and Reagan left early, early this morning. (got to Celina fine) Todd said she wanted to just play in her room for awhile when they first got there. (it has been 2 months since she's been home...left Feb. 22!!) She went to one of her (homeschooled) friend's house and had school there w/ her. (thank you Christy!!) Then went to AWANAS tonight and is spending the night w/ another friend. (thank you Sarah!!) She called me tonight and told me they had a cake there at church for her which said, "We've missed you Reagan!" She told me she was a little embarrassed. Thank you Sparks for making her feel so special! I know this trip will be good for her. As far as Caed...he began throwing up more today. (about 5-6 times) I couldn't believe it. We had been having such good days. One time, it was a white color. The reason that is important is because his tube feeding is white. If he was throwing that up...it would not be a good sign. (especially since his feedings are going into his intestines) Anyway, Dr. G ordered an x-ray right away. Praise God everything came back ok. They have now colored his tube feeding with a blue dye. That way we can tell easier if it's formula or something else (gastric) he's throwing up. He had an extra special day today with an extra special visitor. One of Todd's friends is a minister here in Lubbock and is good friends with one of the Tech football players. Anyway, he called me and asked if Caed would like a visit. Absolutely!!! So, Wide Receiver David Schaefer came and even brought Caed a football. But not just ANY football. It was signed by quarterback Graham Harrell!!! It was too cool. Caed has kept that ball in his bed ever since. When I left this evening, he was almost asleep but still clutching onto it. Thank you Tim and David for making his day! We went for our daily walk again this afternoon. He fought it in the beginning, but soon was racing his nurse down the hall. You can guess who won again! They increased his feedings today to 8cc. He complained of his tummy hurting throughout the day (as usual), but hopefully his gut is slowly waking up and making some progress. Again, not sure about all the throwing up today...maybe we can get back on track tomorrow. Please pray specifically for that.



Playing with "Moon Sand"


Word began spreading about Drummer Caed,
so today the Child Life Team came and gave
him 2 sets of drums. Thanks Addie! It's all your
fault if we start getting complaints from other
patients that our room is too loud. ha!



David and Caed


Caed finally warming up. He even did his
chipmunk song for him!

Tues. 4/22 - update

A cheerful heart is good medicine... (Proverbs 17:22)

How true that is! Not even the best medicine can be as beneficial as a cheerful heart. Overall today Caed had that. We loved seeing his little "smiling eyes" peering out from under his blanket. This morning when we went for our walk, he did so with no crying or arguing! We went all the way to the elevators again. He decided on the way, he wanted to throw his puppy (Todd) off the 3rd floor balcony! Daddy went down to catch him, and then Caed wanted to go down. He picked up his tubes...grabbed his pole...and started going by himself. I was shocked. He did such a great job! Also this morning, I brought Caed a package from the Owen's (Celina neighbors). They sent him some "Big" drumsticks and a CD!! You should have seen the look on his face. That has made his day. We turned the CD on, and of course "Blessed Be Your Name" (Caed's favorite) was on there. He jammed out all morning. (even busted a few bedpans..ha!) We thought is was ok...and encouraged him to get out all his frustration. :) We have posted a video of Caed playing his "guitar" and singing that song. It is such a fitting song for this whole experience. Blessed Be Your Name (regardless of what life brings our way...good times AND bad)!!! He took a good nap this afternoon and has been ok this evening. He has been complaining more of his stomach hurting (probably cramps). So far (it's 8:00pm) he has not thrown up all day. His last one was 9:00 last night. So, we are at 23 hrs. again. I can't wait to post tomorrow and let you know if that number has grown. They are still draining his stomach tube twice a day. I know that has to be helping. He ate 4-5 bites of yogurt and about the same of pizza again. They also left his feeding tube amount alone today. (6cc) We are very glad about that. It has given his intestines a little more time to get used to it. They will probably increase tomorrow, but only 1-2 cc. (I'm guessing) We have not seen his surgeon yet today, so nothing to report as of now.

Todd and Reagan will be heading to the airport at 5:30 in the morning. Please pray for their travel and all to go ok while they are back in Celina. Reagan will be hanging out with several friends there. She is very excited! She has also informed me she is taking the BIG suitcase in case there are things (from her room) she needs to bring back. I'm a little nervous! I'm not sure what our new schedule will look like while Todd is gone. I'm sure my parents will come up and relieve me some. Also pray for Caed to have GOOD days!! Not just for his sake, but also with the change in Todd being gone so long. (and others coming to help out) It will make things MUCH less stressful for me, and I will feel more comfortable about leaving each day for awhile.

Thank you SO much to all of you coming to visit us each day! It is so good to see your faces (even though so many of you, we don't even know!) Thank you for caring enough about little Caed to take time and come see him. It can get VERY draining being up here all day long. Seeing your faces brings us light! I know we say this often, but we continue to be OVERWHELMED by every one's support and love for us during this difficult time. To our church home...thank you for your cards, phone calls, emails, gifts, etc... We miss you dearly and are SO sorry we have had to be gone this long. We cannot begin to express our gratitude and love to you for your support. (especially allowing Todd to be gone so much!! We do not take that for granted and know other employers would not have been as gracious). We have missed seeing that Celina Orange!!! To our former church home (Edna)...we are amazed at how we still feel so apart of your family. I cry every time I read your prayer grams and cards. I can just picture each one of your faces. Thank you also for the cards, gifts, etc... you continue to send. You were there when Caed was born...you know him! Thank you for loving him like you do. Thank you also to my little hometown of Idalou! I can't believe how you have come together and supported us during this time. People that I haven't seen in years are doing things that have blown us away. You have blessed our family so much!! There has not been a day that has gone by that some (stranger) doesn't knock on our door and ask how Caed is doing. They introduce themselves and let us know that their church is praying for Caed!! These are people and churches we do not even know!! We have been overwhelmed by the churches in Lubbock and all over the state at their love and support for us. Caed is on the prayer list of so many churches! How amazing is our God?? This one sick little boy is bringing the body of Christ together in a way that would not have otherwise. Thank you Lord for wrapping your arms around us and using SO MANY to do it in a real, tangible way. Every blessing YOU pour out, we will turn back to praise. BLESSED BE YOUR NAME!!

**sorry to report as I was writing this, Caed got sick again...so I guess 23 hrs. is still the record to beat



Walking with Daddy and "Todd" the
puppy


Bedpans can work for drums, right?
(by the way...he broke both "cymbals")


Caed the Walrus

Blessed Be Your Name!

Mon. 4/21 - update

Today started out good. He did get sick once this morning, but after that, he felt really well. He had several visitors and he talked and of course, wanted to perform his "Chipmunk Act" for them. He was being the real Caed, and it was again so good to see. We went for a walk (which he hated!), but he is slowly learning that it is a MUST everyday. He also asked for more food throughout the day than he ever has. He ate a few bites of cereal, a couple of crackers, a pretzel, 5-6 bites of pizza, and 1 bite of a chicken nugget!! whew!!!! However...most of which did not stay down. It can be very discouraging, but we are trying to remember that when he does eat, the stomach is "working" some. (may not be too great right now, but it is doing something) They increased his feedings today to 6cc. Still not much, but to his little gut...every little bit counts. They also have decided to drain his G-tube (stomach) every 6 hrs. for an hour at a time. I guess to relieve it a little. This evening he had more family come again...Grammy, Nana, Grandaddy, Caleb, Reagan, Xan, and cousin Bergan. (the one Reagan has LOVED getting to be with since we've been here!!) They brought us all shaved ice and then of course wanted to go out to play with the water gun. It's funny, but somehow EVERYONE else gets soaked except Caed! Not sure why it always happens that way. It was a beautiful day again, but we only stayed out for maybe an hour. Caed complained a lot that his tummy hurt tonight. After everyone left, he got sick again. So....only 2 times today. Not bad, but not too great either. We just PRAY that things will start working soon!!! Also pray for Caed's anxiety. The device that is protruding out of his stomach is a little concerning to him. (G & J tubes) We don't blame him...it would scare me too. I think it pulls on his skin sometimes, and he gets VERY uneasy about it, thinking it's going to pull out. Anytime the nurses come close, he starts whimpering and telling me, "Don't let them pull it out!" It seems he gets a new device every week. At least there are no more on his face! We are trying to Press On...although the days and nights are sometimes getting LONG! This Wed. morning, Todd and Reagan will be flying to Celina until Mon. It will be a long 5 1/2 days here without him. Please pray all continues to go well with Caed....no problems....no new procedures...etc... I know we will manage ok without him, but it sure does help when we both can share the load. I think Caed does better when we are both here. He just seems more settled and content. All will be fine; I'm just dreading it. Please pray specifically for me!



Playing with his cars


"Mr. Performer" putting on one of his shows
for an audience


Caleb, (cousin) Bergan, Reagan, (cousin) Xan,
and Caed getting ready to play outside



More fun with the water gun!


Caed wanted to put PowerAde in his water gun!
Nana wasn't so sure that was a good idea...

Sun. 4/20 - update

Blessed are all who wait for Him! (Isaiah 30:18)

Today was a very good day. Caed hit a big milestone. He went 23 hrs. without throwing up! (longest he's ever gone!) Todd and I were disappointed tonight after he got sick, but...when you look at today overall, it was a huge accomplishment. Hopefully we'll have more days like this. They also took him off his PCA (continual drip line of pain med). He did good all day, not in a lot of pain that we could tell. We're just trying to keep the Tylenol and Motrin going pretty regularly to keep him "comfortable." Tonight he has cried more about his tummy hurting than he has the whole day. The drs. also started his J-tube (intestinal) feedings today. He's only getting 3 cc./hr., which is not even a tsp. They will gradually increase it like they did with the nasal tube. He ate a little bit today as well. (2 crackers and few bites of yogurt) He walked all the way to the elevator too. He did great!! We had lots of family come to see him and they spent most of the day here. We had some good "crazy Caed" moments again, which we love to see. (will try to get another video posted soon) He performed his Chipmunk song again for a few more hospital employees. The word is spreading through the halls!

Sorry the blogs have been kinda short the last few days. They have been good, full days...and Todd and I are still trying to recover from our sicknesses. (we are getting better) Thanks for continuing to pray for Caed...we believe he IS getting better! Patience would be a good prayer request for us now! (just completed week #7!!) We love you, and THANK YOU for ALL you are doing!!! You have been such a blessing to us!

Sat. 4/19 - update

Today was a pretty good day for Caed. He now has both G and J tube drains gone. We were kinda nervous about the G one (stomach). He threw up 3 times today, and it was all gastric fluids. However, we also were pleased with it only being 3. (has been worse in the past) The weekends usually seem to be good for him because he has lots of visitors. This morning Uncle Matt and Aunt Kristi came back, but this time with a special toy. Caed had a water gun up here, but it broke, so they brought him a "Super Soaker!" He was so excited and couldn't wait to get outside to use it. We spent quite a bit of time outside playing w/ it all day today. The weather couldn't have been more perfect...it was beautiful. Greg and Kristie also came back up today. Caed got Greg good with the water gun! Then, this evening Grandaddy, Nana, Reagan, Caleb, Uncle Stan, Aunt Megan, Xan, and Grammy all were here too (each of them also got good and wet!). Good thing we have the big room now! Caed put on his show and sang the chipmunk song again several times. He's becoming quite popular...drawing big crowds to see the performance. His nurses have loved seeing this side of him. Overall, again it was a good day for Caed. We are just taking one day at a time and praying that his bowels and stomach can slowly begin to function properly again. We are optimistic that he is on the road to recovery (even though we know it is a very long road!).


Uncle Matt giving Caed money for his bank


Caed and his buddy Greg


A special visitor from "Chik-a-lay" came to
see him


Playing ball with Daddy and Greg


Ice cream tastes best when you use your
fingers as a spoon

Water War pictures

Caed getting Uncle Matt right in the face!


Uncle Matt and Aunt Kristi brought Caed
a new water gun


Getting revenge on his big sister


Caed getting wet


His sister taunting him (w/ Stan and Xan
cheering him on)