Sat. & Sun. pictures

Thank you FBC Edna GA's!! You
put a big smile on this boy's face.
He thought it was Christmas!


Caed being the "big brother."


Enjoying precious time with Caleb!!


"Best buddies" catching up on some long lost
play time


Soccer game with Daddy

Sun. 4/6 - update

I was greeted with a smile as I entered the room this morning. Something I always pray for before I come! We went for a walk shortly after and boy you could tell it was going to be a good day. He was cutting up, talking with the nurses at the desk, just being "silly Caed." We walked to the sky bridge and decided to have a RACE! (He wasn't in his wagon, but he was hooked up to the IV pole.) On your mark...get set...GO! Caed and I raced while Daddy tried to stay close by with the pole. Of course, Caed won again!! Once we got to the end, he wanted to do it again. Mommy was out of shape, but I rested a minute and was ready to go. He continued to have a great morning. When we got back to the room, he wanted to play in the sink. (something he always loved to do at home) We got his Batman figures and other toys, grabbed a stool, and let him make as much of a wet mess as he wanted! Soon, we had family come to visit: Grammy, Great-Granny, MeMe, Uncle Scott and Aunt Kelly. (Todd's side) Then, some of my family came: Grandaddy, Nana, Aunt Megan, cousin Xan, Reagan, and Caleb. He had a full, fun day with lots of family around. This evening Caed got completely "unhooked" for about an hour and 1/2. He hasn't had that luxury in quite a while (since they put in the feeding tube). We put all the kids in wagons and headed outside. It was a beautiful evening! They wanted to race, so we found an empty parking lot close by and had lots of fun. Finally, they got out of the wagons and wanted to race on foot! Caed and Reagan raced several times....again, Caed won!! He got tired after a few times and wanted to sit on the curb to watch instead. When we went back inside, we headed to the playroom and he, Reagan, and Xan played and played. As I sat and listened, it dawned on me that this was the 1st time Reagan & Caed had actually "played" together in 36 days. It was just like at home...Reagan telling him what to do and say. ha! They had so much fun, and I truly think if even for a few minutes, Caed forgot where he was at and felt like his regular, normal self. He even got to play a little soccer with Daddy. Finally, he told us he was tired and wanted to go back to his room. We gave him a bath (which he doesn't like because we have to tape up his chest and abdomen). However, he sat in there a little while and played with his toys. As soon as we got his gown back on him and into bed, he was out within minutes. This was a very good day!

The doctors' report: Caed has been running low grade fever for the past 2-3 days. They aren't sure why. Today Dr. McGill wanted him to have another c/t scan (looking for an abscess, obstruction, etc...), and also a ECG (echo cardiogram). They have taken cultures from his chest catheter (all been negative), but this test will show if there is any infection around his heart. Caed had the c/t scan this evening, and Dr. McGill just called us and said it looked great! (no problems) He will have the ECG tomorrow sometime down in PICU. He will be sedated for that. He has to be very still during it, and if there was no sedation...let's just say, it wouldn't happen! He is a VERY anxious boy when it comes to all these tests and procedures! Caed did get sick a few times today, but not a lot. He also had a couple of bites of cheese pizza again! We have noticed the past 2 days that Caed's face is pretty swollen. We told the dr. this morning. He wasn't sure the definite cause, but will look into it further if it stays this way. His GI dr. only increased his feeding amount to 18 cc today. I was very glad. Tomorrow they will go up to 20. I think we're going to be ok. We are going to ask the drs. if it will be possible for Caed to be totally "unhooked" for at least an hour each day. We saw how good it was for him. Dr. Goldthorn has been just as concerned with Caed's emotional and mental well-being as his physical. She has really pushed for the park days, so we know she will see this request just as important.


Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us RUN with perseverance the race marked out for us. Hebrews 12:1


One of Caed's favorite things to do...play in the
sink. He finally feels well enough to do it here.


The "Wagon Brigade" (Caleb, Caed, Reagan,
and (cousin) Xan)


Wagon races in the parking lot with Daddy,
Grandaddy, and Nana


Foot races! It feels so good not being "hooked
up" to anything for a change!


"Come to me, all you who are weary and burdened,
and I will give you rest." Matthew 11:28

Sat. 4/5 - update

Today began rough and ended rough....but the middle was oh so sweet! Caed got sick several times this morning, but by noon, things turned around big time. Uncle Scott came dressed up to surprise Caed. At first he didn't know who it was, but it still made him smile. We went for a wagon ride, and then Caed got out and raced Scott down the hall. You can guess who won! After that, he played bubbles and just overall talked and laughed like normal. Caed also had another special visitor (someone we had never met). His name was Colby and his family live in Celina and go to our church. He is going to Tech here and came by to see Caed. He gave him a newspaper filled with signatures of Tech football players! I know Caed can't fully appreciate it right now, but someday he will. (Todd and I were very impressed). One of the players signed it and wrote, "I'm praying for you." It's truly amazing how MANY people are doing just that! After Caed's nap, I heard him ask for more pizza!! Of course I jumped up and ran to the frig to heat some up. This time he didn't want me to cut it. He ate about 3/4 a slice!!! Then a little later, Daddy and Reagan came up with our favorite.....Bahama Bucks!! (shaved ice) THEN...we had even more special visitors. (Grandaddy, Nana, Caleb, Grammy, Scott and Kelly) The whole time Caed was in a good mood and smiled and laughed and enjoyed this fun time with family. Reagan got up in his bed with him and they watched "Alvin and the Chipmunks." They laughed and had a good time. We then decided to go for a walk (since he was feeling ok). Caed wanted his tennis shoes this time. We walked all around and even went outside. After he had done that awhile, he wanted his wagon. I know he was getting tired. This was the longest we have seen Caed be "normal" this whole month. It just brightened up the room and made every one's day! Finally, a few hours ago, he began getting sick again. He fell off to sleep pretty easily...he had a full day! Tomorrow the GI dr. wants to raise his feeding tube amt. back up to 20. I am very worried about it. The last 2 times we've done that, it has made him extremely sick!! Please pray that he can have another "feel good" day tomorrow, and that his body will react positively to the feeding change.

Thank you God for today!! Thank you for bringing JOY to Caed. His smiles were like medicine to our wounded souls. We continue to praise you for your work in our lives through this storm. You have been there from the start...and we know you will be there in the end. Thank you for fully knowing how much we can bear, and giving us glimpses of hope through days like today.
You make ALL things GLORIOUS!!!



Caed had a special visitor come to see him this
morning. (Uncle Scott - Todd's brother)


Bubbles...bubbles everywhere!


Smiles for $$$


Pizza seems to be the food of choice these days


The 3 Amigos together again

Fri. 4/4 - update

Today began with us going back down to endoscopy. They came and got us in a wheelchair this time, which is much better and less traumatic for Caed than a big bed. We have been getting a certain transporter the last several times we go anywhere (his name is LeRoy) and Caed has become quite fond of him. I think it goes back to the whole "security" issue for him. (getting used to the same familiar faces). When we got down there, Dr. Feist (GI) first tried to unclog the tube "manually." He made several attempts, but never any success. So...they wheeled him to another room where they would put him under anesthesia and insert a whole new tube. Caed was sitting in my lap in the wheelchair through it all, and they even injected the anesthesia at that time. All of a sudden he went limp in my arms. (not a fun thing for Mommy and Daddy to witness) We layed him up on the table and left the room. About 20 minutes later Dr. Feist came out and said he attempted to unclog it one last time...it worked! So, they didn't have to reinsert a new tube. (however, he then was under anesthesia for no reason) They came and got us and put Caed back in my lap while he was still out. So, he woke up to the same place he was before...Mommy's arms. Pretty cool. The rest of the day wasn't necessarily great, but not bad either. He got sick a couple of times, and had some pain spells. Our good friend Brad (assoc. youth minister) and his fiance Crystal came to visit today. Brad is one of Caed's heroes!! He plays guitar and sings...therefore Caed worships him. Brad made a video for him of the youth worship service Wed. (the band) and of the youth singing a silly song to him, and also some of his Cubbie friends saying hello. Caed loved it!!! He smiled so big and has watched it over and over! Tonight has ended on a good note. He ate a couple of bites of lasagna (thank you Brent and Angela!), and had fun playing with some new toys he received today. (thanks Angela P.!) At one point he said, "I really like this!!!" We were playing with lots and lots of bubbles and he and Daddy were fighting them down with the swords. It was so good to see him smile and be silly!

*Just a little FYI for those of you who come to visit Caed. Grandaddy has started something with Caed where if he smiles (or gives hugs) he gets money!!! (he doesn't care much for the green ones....but he LOVES the brown and silver!) We have made him a little bank that he is keeping his "stash." Not promising that it always works, but we're willing to try anything to see that smile of his.

Thurs. 4/3 - update

Caed began throwing up at midnight last night. (however...I never saw any pizza!) He continued this most of the night and day today. We began seeing bile again. Also the amount was QUITE a bit!!! (more than he's ever done before). I won't go into all the confusing details, but we concluded that his tube feeding amount might be causing it. (too high) So, the GI dr. decided to lower it back to 15cc/hr. and leave it there for 2-3 days and see if we notice a change. They said 15 may just be his limit. (he had told me yesterday that the goal would be 60!) Anyway, today was not good for Caed. He just felt horrible. Finally, after they changed the volume back, we saw the throwing up lessen. (only twice) Hopefully, it has made some difference. THEN....tonight we started having problems with the feeding pump. After a few hours of messing with it and even changing pumps, they realized his tube is clogged. (or it is up against the intestine ????) So, the plan is to do an x-ray in the morning and then probably have to reinsert a whole new tube. It is getting SO frustrating! It just seems like if it's not one thing, it's another. I hate what he is going to have to go through tomorrow. May not seem like much, but just transporting him to some far off room in the hospital for all the various procedures he's had, scares him so badly. There just seldom is a day that he is not being messed with (more than the normal stuff). We obviously want them to "fix" whatever problem has arisen, and in doing so hopefully discover some new helpful information (whether through an x-ray or another scope, etc....). However, our main prayer request tonight is just simply for Caed! Not necessarily his body or any of the medical problems he's having, but specifically for his spirit. You can see HOW miserable, sad, angry, frustrated, etc....he is. Those of you who really know Caed know this is completely opposite of his true personality. We call him the clown at our house. He's so funny and always making everyone laugh with his actions, expressions, speech, whatever! It's really hard not seeing that same little boy anymore. Yes, he has his moments or days that are good, but they don't last very long, and he's back to being sad again. We know he is SO tired of being here and hearing all the "pep talks" from everyone all day. To this little 4 year old, he can't possibly comprehend that this is just "going to take time." Everyday seems to get longer and longer. Please pray that God would fill him with JOY! (a happiness not dependent on good circumstances) Pray for Todd and I and others that are with him each day to be positive as well. Sometimes, at 3am....it's very difficult. We do have SO much to be thankful for and like I always say, "things can always be worse." Pray for the Lord to bring all those positive, good things to our mind often! We know satan is attacking with the fiery darts of weariness and discouragement.

...Weeping may endure for a night, but joy comes in the morning. Psalm 30:5

...but REJOICE to the extent that you partake of Christ's sufferings, that when His glory is revealed, you may also be glad with exceeding JOY. 1 Peter 4:13

Wed. 4/2 - update

When I got back to the hospital last night, things continued to be bad. All night he was either throwing up or having diarrhea at least every 30 minutes. He would sleep maybe 15-20 minutes and then start crying. I began to get pretty worried after several hours of this. Finally, his nurse gave him some med to help relax him and make him sleep. He definitely needed it. We slept 2 hours and then it started up again. At about 8:00 this morning, he got sick again and that was the last time all day! You could tell he felt so much better. We laughed and played and he even wanted to go for a "walk." (you know he's feeling good when he doesn't want the wagon) We walked down to the coke machine to get another PowerAde, and then he wanted to go outside. It was still pretty chilly then, so we just stepped out for a few minutes. The remainder of the day was so good! When the drs. came in this morning, they wanted to run some tests to make sure it wasn't just some virus he caught while here. (I pray it was just a stomach bug and not related to his problem). This afternoon I was eating a granola bar and all of a sudden he reached out his hand and said, "I want some." (if he ever eats anything, it's always forced, so this was great to hear!) I broke off maybe 1/4 of it and he ate it no problem. Then later he wanted some Fruit Loops. (ate maybe 6-7 of those) Later on I asked him if he wanted a bite of banana (or something), and he said, "No, I'll just wait for my pizza!" I was shocked. So....I called up Pizza Hut (his favorite) and we had us a "Pizza Party" tonight. I cut him a very small slice and then broke it up into maybe 15 bite size pieces. We thought he might just eat a couple at most. Nope! He cleaned his plate!!! Praise God!! This was a HUGE milestone for Caed. Then the question became: would he be able to keep it down? So far, as I write this, it's been about 4 hours! Such a praise!!! When the night nurse was checking Caed's vitals, she looked at me and said, "His bowels sound great!" Such a simple statement, and she probably had no clue how powerful those 4 little words were to me. I'm not saying that Caed's body is back to normal by any means; however, I am so encouraged with these few little (huge to us!) steps of progress. We pray for more to come............

Tues. 4/1 - update

One month ago tonight we were in the ER just moments from Caed under going major abdominal surgery. The memories from that horrible day/night are sometimes too much to think about. We were so close to losing him!!!! HOWEVER.....those same memories also provide us with such hope and gratitude. The Lord was in this from the beginning, and we are confident He isn't going anywhere now. It's amazing to look back at each day and see how far we've come (even though at times we sure don't feel it). We take great comfort in the Faithfulness of our God. We have seen how He has carried us in the past, therefore we expect nothing less than His future grace.

I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore have HOPE: Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; GREAT IS YOUR FAITHFULNESS. I say to myself, "The Lord is my portion; therefore I will wait for Him. The Lord is good to those whose hope is in Him, to the one who seeks Him. Lamentations 3:19-25

Update on Caed today: not a good day. He threw up or had diarrhea ALL day every 30 minutes or so. I never saw a smile. I know he was pretty miserable the whole day. He also had LOTS of anger toward the nurses. You could see it in his eyes. There were times he wasn't too happy with me either. But tonight, after he had gotten sick (again), he whispered, "I love you Mommy." My heart melted. It's always nice to hear your child say those words, but after being with him all day and seeing how much misery he had been in, it spoke volumes to me. Please pray for a restful night. (and not just because I have "night duty" tonight...ha!) He is one exhausted little boy (getting messed with continually all day long). Thank you again for all the support you are pouring out on us!! It's truly overwhelming!