Sat. 5/31 - update

We are beginning to see a pattern: Caed wakes up in a great mood, immediately wants to start playing, does well until about noon, gets sick, takes a nap, has a fair afternoon, maybe gets sick again, and then finishes the day pretty well. I'm definitely not complaining. Like I've said before, we are seeing a change. We just need to remember it's a slow one. His mornings are SO good, it's hard not to expect the whole day to be that way. But...we will get there one of these days. This morning he wanted to go to Logan's house (just across the street from my parents). They are in the middle of a building project, so we got there just in time to see a big "dumpster truck" bring a load of sand to Logan's driveway. Whoo! What great fun! They climbed and had a blast. Finally, it got pretty hot, so they decided to cool off in the backyard pool. ha! Caed couldn't really get wet, but he walked around in the water and still had fun. Just like yesterday, he got real quiet and then gave me the sign and wanted to go home. Once we got there, he got sick. After his nap, he chippered up a bit and took Grandaddy back down to the sand pile. Todd and Reagan flew in this evening, so he, Caleb and I went to pick them up. He was SO excited to see them. When I was putting him to bed tonight he asked me why he never gets to go on the airplane like Daddy and Reagan. I told him we would VERY soon...............!



Caed & Logan climbing the sand
mountain





This is the closest to swimming Caed can do
right now..however even this feels good in
100 degree heat!



Just relaxing pool-side

Fri. 5/30 - update

SHOWERS OF BLESSING!!!!




Praise God! What another terrific day! Caed IS improving! Up until these past 2 days, it was very difficult to see any progress. We were basically seeing good day/bad day... etc...You can most definitely see it now. Like my cousin Marnie said today, "I've never seen him like this!" (during the past 3 months) He woke up in a great mood and again wanted to feed the fish first thing. We left for the Science Spectrum and he did wonderful. As we were driving over, it was the weirdest feeling. I had not driven him to Lubbock unless we were heading back to ER/hospital or going to a dr. appointment. It truly was an unexplainable feeling being there at the museum with him. People seeing him would never know he was sick. He went around to the different exhibits with Logan and the girls and did great. We were there almost 2 hours, but he finally gave me the "sign" and said he wanted to go home. Before we left Marnie asked him if he wanted a snack and he said yes. (definite change) He chose a bag of Teddy Grahams and ate maybe 1/2 of it. On the way home he did get sick, but I truly think he was just upset (the crying can make him throw up). After his nap, he wanted a Popsicle. (ate 1/2) Then, this evening he ate a bite of yogurt and 2 crackers with cheese. So far, all has stayed down. The last several hours haven't been quite as good as this morning, BUT....he isn't throwing up. (that is a major thing!) I've been trying to explain to Todd the change we're seeing in him. I pray he continues. Todd and Reagan will fly back tomorrow night.

Now, for an explanation of the "2 PLATES of lasagna." ha! My dad was eating supper on the couch next to Caed and they noticed him checking out my dad's plate. He asked what it was and then said he wanted some too and "on a plate." My mom cut up 10-12 bite size pieces. He ate 2 plates of that, (so around 20 bites) and a small piece of cake. He kept it down for 2 1/2 hrs before he got sick!! Some of it had to have gone through. Thank you Betty for bringing it! You probably had no idea the Lord was going to use a simple pan of lasagna in such a MAJOR way!

Our GI dr. not only lowered the TPN amount (1/2), but also changed what was in it some. I am very curious to talk to him on Tues. Ever since he has been on the new TPN we have seen the difference in Caed. The dr. changed it for several reasons. #1) his blood work on Mon. showed the numbers with his liver were elevated. My mom and I had noticed earlier this week he had a yellow tint to his skin/eyes. (liver) Obviously this is NOT a good thing. TPN can damage your liver if you're on it too long. So, I'm guessing the GI dr. wanted to drastically lower his TPN intake. #2) our HH nurse had talked with him about what we were seeing with his TPN. It seemed he did ok when he was "unhooked" each day, but as soon as he got back on at night, it would start up....and then he was REALLY bad in the mornings. Never the less, whatever the reasons...we are thankful for the change we see. Thank you God!!

Like I stated before...we ARE seeing a change! But, I also think we are taking baby steps. He still has a ways to go. We're just thankful that we are beginning to see a light at the end of this long, dark tunnel!! Keep praying!

Science Spectrum

Logan, Caed, & Jensyn watching a ball exhibit

Thur. 5/29 - update

This is going to be short. It's late, took too much allergy medicine today, and I'm exhausted. Today was a VERY GOOD day! He got unhooked from his new TPN about 9:30 am or so. He was in a good mood, wanted to do things, drank the Carnation drink several times. Only threw up twice. Once was because he got his dressing changed today and he got upset. The other time was very small.

I went to Idalou's graduation tonight. These were the kids I taught when they were in the 4th grade! Can't believe how "grown up" they all are. It was SO nice being able to get away again. When I got home there was a note on the bathroom mirror. It read:

"6:40 - 2 bites of yogurt
7:00 - 2 PLATES of lasagna!!
1 slice of cake

PRAISE GOD!!

Had a wonderful evening until 9:30 - threw up. Went to bed at 10:00"

I can't wait until morning when I can ask my parents further about the "2 plates of lasagna." I can't even imagine!! And yes! Praise GOD!! I really feel he is on the up side of this recovery. Tomorrow morning we are planning on going to the Science Spectrum with Marnie and her kids. Caed was very excited about it today. Hopefully, things will still be good in the morning!!

Please pray for MORE EATING!!!!!

Wed. 5/28 - update

Thank you God! Today was a very positive day. Caed woke up in a good mood (always a great sign). I began feeding him the Carnation Instant Breakfast (10 cc), and then every hour after I would alternate between that and a tsp. of yogurt. The norm is for it to be down for maybe 30 minutes and then he usually throws it up. I did this from 9:00 - 1:00 (5 feedings). Never once got sick! A huge step!! He took a short nap, and during that he threw up a couple of times (but very small). Then we started back on the eating every hour...this time I gave him a choice of a few more things. He still wanted to stick with the yogurt. I'm hoping he will learn that he HAS to eat "something" every hour and begin to ask for different things (instead of us force feeding). He got sick a few more times tonight, but again, was very little. He went outside for awhile and played with (my cousin) Marnie's kids. He hasn't talked very much today, but that's ok. I'll take the silence over the screaming. (can wear on your nerves!) Another praise is that his new TPN bags arrived today and they are now 1/2 the dosage and cut down to 12 hours!! That means he will only be "hooked up" mainly at night. (9:00 pm - 9:00 am) That will make it much easier for him to get up and be active or us go somewhere. His backpack can be very heavy and not much fun to carry all morning. However...I know this is probably a trial basis according to our GI dr. He wants to see Caed in several days to see how he is doing with the new amount/time.
I pray he can do well and we can go to his appt. and SURPRISE him at how well Caed is eating by mouth! We also got a call from the "Pediatric Behaviorist" today and we have our first appt. Mon. afternoon.

Todd and Reagan got to Celina ok. We were able to talk to each other via video phone on the computer. First time we've been able to use it. I had Todd walk around the house so Caed and I could see everything. I even made him open up the refrigerator! (Brad, if you're missing your soy sauce and refried beans...we've got them!) Caed's face lit up when they went to his room. I was a little worried at how he would react to seeing everything. It's amazing though. I can't begin to explain the feeling of seeing your home on the computer. A place of such familiarity, and yet so foreign. We've only been away 3 months. I can't imagine men and women in the service who are gone sometimes a year or more! I definitely have new empathy for them now. I am very thankful for the video phone. It helps us feel like we're home, and also gave me a picture of what it'll be like when Caed and I can walk through the door too. Tomorrow Reagan gets to go horseback riding with a group of fellow homeschoolers. She is looking so forward to that! Thank you Christy for watching her for us!

My parents and I have also had a good day. It's amazing how when Caed has good days...so do we! ha! My mom and I began going through ALL the bags and boxes from the hospital. I don't think even a picture can do it justice. Those are just Caed's toys. We are trying to get somewhat organized so the kids can better see what all there is to play with. Pretty difficult when everything's stuffed in bags. Thank you all again for thinking of them and sending such fun stuff! It helped in the hospital to take his mind of everything, and now we pray the books, toys, etc...will help again bring some normalcy to his life. I think of each of you when I look at it ALL! We are overly blessed to have such caring, supportive family and friends like you!



Christmas in May?

Tue. 5/27 - update

First of all I want to apologize if I scared some of you because of last night's blog. We have received many calls. I will explain. Yesterday wasn't really any different from the last several days. However, we all were exhausted, emotionally and physically. I have been so burdened by the fact that he is not tolerating anything by mouth. I had several moments the last few days where I literally felt "I can't do this anymore!!" (God quickly reminded me that I am not the one doing it anyway...He is!) Last night, I just felt the Lord telling me to rally the troops and simply ask for prayer! No update, no drama, no verses, no pictures...just ask them to PRAY!

Now I want to tell you about our night. Immediately I received several text messages from some dear friends just letting me know they were praying. Because Todd is here now, I decided to "get away" for a moment, so I slipped out to the hot tub to relax. It was wonderful! When I came in, I heard laughter coming from the bedroom. It was Todd, Reagan, and Caed. They were getting ready for bed and having such a good time. (so needed for all 3 of them!) Caed had a great night. Never woke up. I got to sleep late. And Caleb slept 12 hours! So, therefore my parents also got some needed rest. The last several nights Caed has been waking up several times through the night getting sick. He did not last night. I could easily say it was the medicine I gave him before bed. I could also say the good mood he was in was because his Daddy was here. I will not! I believe with all my heart it was because of ALL the prayers that were specifically lifted up last night!

Caed has had a decent day, I guess. He still threw up several times like normal, but not as much as he has in recent days. My mom, Caleb and I went shopping today. It was SO good just to get out of the house. Thank you Todd for allowing me to be able to have that time. It was desperately needed. I now feel refreshed, recharged and ready to go another week.

Please know that I may need to "rally the troops" again! Do not be alarmed. We ALWAYS need your prayers, and we thank you for continuing to do so on a regular basis. However, sometimes there will be times that it is needed more. And just like last night, I will not tell you what to pray specifically. The Lord knows and He will direct you.

Todd and Reagan will fly out for Celina in the morning. They will come back Sat. night. Reagan has been looking forward to getting back. I know she needs this time again.

*Bridgette...we love you and will be praying for you in Honduras this summer. God is and will continue to use you and your gifts to honor HIM!! (Tina, we will pray for you too. I know as her mama it's going to be hard to let her leave.)

WE LOVE YOU ALL!! Thank you that we have not had to go through this alone.

Mon. 5/26

Please just PRAY!

Sun. 5/25 - update

The plans of the LORD stand firm forever, the purposes of His heart through all generations. (Psalm 33:11)

...But we must be prepared to wait on God's timing. His timing is precise, for He does things "at the very time" He has set. It is not for us to know His timing, and in fact we cannot know -we must wait for it. So take heart, dear child, when God requires you to wait. The One you wait for will not disappoint you. He will never be even five minutes behind "the appointed time." And soon "your grief will turn to joy." (John 16:20) Streams in the Desert

Oh God! How long must we wait? Days have turned into weeks and now months! I know it is in our best interest that we do not know Your time table. Help us to trust YOU and know that You have not forgotten us or abandoned us. We are in the palm of Your hand!

Today was basically identical to yesterday. The morning was absolutely awful! He threw up every 30 minutes or so for 5-6 hrs. straight. It was hard seeing him suffer, but also my hope and optimism began to dwindle with each episode. I kept thinking, "God, why do you keep giving us these GOOD times/days with him where he acts so normal, then only to be set back the very next day?" I guess I partly know the answer, and I am thankful that He is giving us these glimpses of hope and "normalcy." Probably couldn't go on without them. It is just SO incredibly difficult to be on this roller coaster...up and down...up and down. God, thank you for the "ups!" Hold us ever so tightly during the "downs!"

After Caed woke up from his nap, he was in such a good mood and felt great. Reagan had gone swimming again, and Caed begged me to go back out to Lee J. and Sandy's pool. If you're from around here, you know what the weather was like...awful. But, he kept on, so I decided even if it was just a car ride out to their house and we had to turn around and come home....at least we got out. We ended up staying. Some did end up swimming a little. He had so much fun. He did exactly what he did yesterday. Threw toys in for the other kids to get...and also played on the swing set. He even wanted a brownie. Huge deal!! He doesn't ever want any kind of food. He ate 2 bites, but handed it back because it didn't taste good. Don't get me wrong (and I apologize for whoever made them...ha!), the brownies were fine and normal. Things just don't taste right to him anymore. I think it's all the medication he's been on. Makes it tough when we're supposed to try to get him to eat!

While we were there, we stayed for church. It was the first time I've been involved in corporate worship in almost 3 months!! We only got to stay for 4-5 songs (because Caed started getting sick), but I am truly grateful for it. As Caed was begging me to go out there this afternoon, the Lord knew I needed it as well. One of the songs we sang was "Blessed Be the Name." I cried all the way through it. Songs like that take on a new meaning when you are literally walking through darkness like we are. Thank you God for speaking to me through the music. We were singing these songs to YOU!....we were praising YOU!....giving glory to YOU!...and yet YOU in return were speaking directly to me! Thank you for reminding me that YOU ARE HOLY, RIGHTEOUS, ALMIGHTY, JUST, SOVEREIGN, LOVING AND MERCIFUL!! You knew that I desperately needed this time and You provided it in such a mysterious way. I was simply taking Caed out to play. You instead needed to speak to me! Thank You!!

Sat. 5/24 - update

Caed had a very good afternoon/evening! I usually can tell from the way he wakes up...either in the morning or after nap. This afternoon I knew immediately it was going to be a good one. So, we headed back out to Sandy and Lee J's pool. He played awhile on the fort/swing set. Then, he found some fun rockets that you could throw in the pool. That was his favorite. He would throw, and the rest of the kids would dive after them. We were probably there 2 1/2 hrs. and he never once threw up or said his tummy hurt. After we got home, he got sick a few times, but overall was still ok.

Tonight's blog is going to be short. I am exhausted. Caed was up several times last night (sick). Today was good and I thank God for it!! We pray for more and more days like it!!!





playing with cousin Logan



Caed would throw...they would fetch



taking care of Nana's flowers



helping Nana do her "gardening"

Fri. 5/23 - upate

1 step forward...2 steps back. Seems to be Caed's theme. Today was not a very good day. It was especially frustrating to me after seeing him yesterday. However, I know it could always be worse. He just didn't seem to feel well today. He threw up several times (not necessarily unusual), but I guess I just had high expectations of things continuing from last night. He also ran some low grade fever most of the day. Just enough to make him feel lousy. Finally, around 9:00 pm, he all of a sudden starting acting normal. It just amazes us when this happens. Didn't last too long, and then he got sick again. I guess if we're still on the "good day, bad day" schedule, tomorrow looks promising. ha! I hate all this for him. Several times today he would be crying telling me, "I don't like throwing up." Can you imagine? Throwing up sometimes 10 or more times a day for 80+ days in a row? I thought being pregnant with morning sickness was bad. That's nothing compared to what he has and continues to go through. Please continue to simply pray relief for him!

I don't think I reported much on Caed's dr. appt. yesterday. They took him off one of his antibiotics, and also told me they wanted to keep his G-tube in for awhile longer. Even though we're not using it, they basically want it to stay for "insurance" purposes. (just in case we end up having to put in the J-tube later on) That way they can go in through this hole and not have to do surgery again. We have mixed feeling about that. We completely understand the logic, but have also been told that 20% of kids with G-tubes can develop stomach irritation. I'm sure Caed is in that 20%!! He hasn't much followed the rules thus far. Also, one of the other antibiotics he's on sometimes causes nausea and cramping. Not a good side effect on a child who already suffers greatly from both of those! So...we are interested in seeing how he would do without the G-tube in and also off this particular med. (however, it's supposed to be helping with the acid reflux!) auugghhh! Very frustrating.

I know this is all in God's timing though. Like we've said many times before, He is sure testing our patience and perseverance. They told us from the very beginning that it would take lots of time to fully heal. However, I don't think the drs. or us realized it would be to this degree! For whatever reasons...God isn't allowing a "quick fix." It's hard going through it day by day, but I DO thank Him for it. Never in my life thus far have I gone through something this difficult. He is teaching me things that I would have never gotten had we not had this experience. We will never be the same....................Thank You God that You make ALL things beautiful in Your time!

Thur. 5/22 - update

Children are a gift from the Lord!


Today has been a day filled with mixed emotions. Early this morning I heard the news of Steven Curtis Chapman's daughter. From that point on I felt sick to my stomach. Even though we came so close to losing Caed ourselves, I cannot imagine what that family is going through. Even more than ever, I found myself asking God, "Why? Why are you allowing these things to happen?" It is not for us to understand the reasons, so we have to simply TRUST in the One who does. This news was a reminder for me that our children ultimately belong to Him. He blesses us beyond measure when He gives them to us, but we have to understand we only have them for a season. Some seasons are longer than others. They can last a lifetime. Others might only be a few short years. It's hard as a parent not to get depressed with such a thought. However, instead of living in constant fear, we need to make the MOST of the time we have. It helps bring things in perspective. Are we wasting precious time and energy on things with no lasting value? God, help us to remember our responsibility as parents is a big one. Remind us daily that our #1 goal is to show them YOU!

Caed had probably his best day yet today!! This morning was very typical. He did throw up several times throughout the day and we did have our "anger moments." However, from about 6:00 pm on...it was unbelievable! Watching him play, I had to remind myself what these last 3 months have been like. He was absolutely as normal as can be. His voice throughout all this has been somewhat affected. Tonight, I heard HIM for the first time. He and Reagan had so much fun outside with their water guns. They truly "played" together for a couple of hours. I kept my eye on them (mainly Caed), but tried to leave them alone and let them just be together and play. At one point I heard Caed humming a song. I know that doesn't seem like much, but for us it is! I increased his amount of carnation instant breakfast. He never threw any of that up today. (only clear liquids) The doctors were amazed at how good he looked at his appt. He did get sick a couple of times while we were there, but that's ok. I'm trying not to get so frustrated every time he does. His stomach / intestines are healing. They are working and moving things through, but still on a slow pace. That's to be expected. If we can keep making small steps each week, he'll be back to normal in no time. (I have to laugh at those 2 words because "no time" for Caed might be a couple more months! ha!)

Like I said earlier, I had a range of emotions today. In one sense, I was literally sick at thinking what the Chapman family has to be going through. I can empathize only a very small bit. Although we came so close to losing Caed...I still have my child! Even though he continues to throw up many many times a day...I still have my child! Even though there are times he is "emotionally troubled"...I still have my child! Even though he has tubes coming out of his chest and stomach....I still have my child! Even though he is not the same little boy we once knew...I still have my child!! Oh God! You have shown us Your mercy and love. Thank you for allowing us to have a little more time with our Caed. We don't know when You will ultimately call him home, but as we were reminded today, time is fleeting. Help us to be purposeful in our parenting.

You give and take away...but Blessed be the Name of the Lord!!

Wed. 5/21 - update

I know if we were to look back a month ago at this time or two months ago, we would realize how much progress Caed has made. He has...I'm sure of it! However, when you're in the middle of it, sometimes time seems to stand still. Will he ever be back to normal? Tonight as we were having bath time (Caed...sponge / Reagan...bathtub), I just realized HOW MUCH I miss "normalcy." Caed used to be my "bath boy." He would ask 10x a day if he could take a bath. He loved to play in it. Now, he screams just getting wiped down with a soapy wash cloth. I know it's hard on Reagan too. She has been seeing the "angry Caed" for the first time through this. I know it scares her, and she misses him.

However...today was not too bad (overall). Continued to have vomiting / pain/ screaming. We really pushed the carnation instant breakfast today. Every hour. He did pretty well with it. At times he would throw some of it up, BUT...since about 4:30, he has kept everything down. Thank you God!

He also had a pretty active day. He had several visitors, which is good because I think it helps take his mind off of everything. He didn't speak a whole lot today. Lots of sign language or grunting.

Tomorrow morning is the dreaded dressing change (broviac). His nurse will come do that as well as draw blood. Then, at 1:00 we have an appt. with Dr. Goldthorn. Please pray for Caed tomorrow. He will definitely experience lots of anxiety.




Watering strawberries with
Great Granny



Pushing his little friend, Kaimen


playing the computer for the 1st time


going for a ride with Grandaddy & Mommy


Reagan being such a big helper

Tue. 5/20 - update

Thank you God for giving us such a good night this evening. It's always nice to go to bed on a happy note! Things started out pretty good when Caed woke up this morning. He was ok for about the first hour or so....then the crying/vomiting began. Just like everyday, we have these moments scattered throughout the day. Sometimes they last longer than others. About mid-morning, my good friend Marilyn came out with her kids. Caed enjoyed being around them (even if most of it was just watching them play while he sat on the couch). It's good for him to be around other children. I think sometimes it takes his mind off his problems for awhile. Then, this evening, we went out to "The Everitt Pool" (thank you Lee J. and Sandy) and he sat and watched everyone swim. He did ok for about an hour and then he gave me the "sign" (hand on tummy) and I knew it was time for us to go. As soon as we left the backyard he began crying. He threw up when we got home and then sat on the couch for quite awhile. He just seemed so depressed. Finally, Reagan made it home and that's when we saw Caed truly be himself all day long. Grammy had bought them a new game for their Wii, and he wanted to play. He jumped up and was being so silly. Immediately a light in Reagan's eyes went off. When she sees the"real Caed" she gets so excited. I know she misses him (like we all do). They played Wii for awhile, made some silly videos on the web cam, went downstairs to play air hockey, etc... and just overall had a VERY good night. My parents went out this evening, so it was just us 5 here. I am so grateful for having this time. (especially since Caed was feeling well) It was good for all of us. We have needed it! We began today giving Caed 5cc. (tsp) of Carnation Instant Breakfast every hour. (that's basically what he would be getting with the feeding tube) There were times he threw it up, but overall...it was progress. We will try to continue this and also gradually increase it like they did in the hospital. IF he can successfully do this, the J-tube option will probably be done away with. We are wanting them to take out the G-tube. It will be a week tomorrow that it has been totally closed! Dr. Goldthorn can't believe it! I'm sure just having that in his stomach is irritating it. I talked with Dr. G more about the Pediatric Behaviorist today. She spoke very highly of this woman. We will probably set up a time for her to initially assess Caed next week. I am excited to start that and am praying for positive results. Dr. G also said Caed can most likely stop the antibiotics by the end of the week. I am really praising God for that one! These meds are continuous all day and night. I have been having to be the day AND the night nurse. Have only been getting about 4 hrs. of sleep the last few nights. Surprisingly I feel ok though. Maybe just knowing it will only last a few more days helps.

Todd will fly back to Celina in the morning. It is always good having him here. Not only for an extra set of hands, but I think having us both around is good for Caed (& Reagan). Next week when Todd flies out, Reagan will get to go with him. She has been wanting to go back for awhile now. It's always good for her to be back home if only for a few days.

Please specifically pray for the "nutrition drink" we are giving him to increase and also be able to STAY DOWN! (the TPN can also decrease the more his stomach starts working on its own) A huge need!! We also had a praise with some blood work done today. Thank you God for answering our prayer!


Caed and his friend Ben taking
care of the fish


Playing Wii

*Thank you Celina Bobcat football
team and coaches for everything you
sent Caed! He wore his shirt very
proud today!!!


Nurse Reagan


Caleb and his big blue eyes

Mon. 5/19 - update

...we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. (Romans 5:3-4)

God has placed this verse on my heart the last several days. Sure, it's an encouraging verse, and one that I memorized back through the years. However, to REALLY mean it...to understand what Paul was saying and be in total agreement with it, is entirely another thing. We are to REJOICE in our present suffering. What? Are you kidding? You mean God is wanting me to be happy that my child came so close to death, that he is still critically ill, that he is not the same little boy we remember, that our family has been ripped apart and forever changed? NO! God is not telling us to be happy about all those things! I truly believe it breaks His heart to see His children suffer. However, this verse doesn't end with the "suffering." He's telling us that it has a purpose in our lives. We are not called to suffer for suffering sake. It isn't meaningless. There is a much bigger picture that we cannot see. God tells us if we can view our suffering as Him molding us and making us shine even brighter than before (to rejoice in it), we ultimately will have HOPE. And in the mean time, have also gained perseverance and character. I want so badly to see the END! But I can't. There is an order to follow in these verses. We can't jump from suffering to hope. We first have to persevere. To keep on keepin' on! Right now, that is becoming so difficult for us. The day in day out...is getting very old. (I'm sure Caed would agree) But, if we can do that, then God promises to produce character in us. I see the Lord working on me in a big way. Things that I used to worry about or get upset over are beginning to take on a new light. They are petty! He has and continues to use this experience to change me. Finally, He tells us that this new character will produce hope. Hope in a faithful, loving, merciful God! A God who provides. After going through trials and seeing God's faithful hand bring us through, can we not then have HOPE that He will continue to do so over and over in our lives as new ones come up? Absolutely. Dear Lord, help us as we go through these steps. Help us to SEE YOU and know that we are not alone; You have not abandoned us. There is a greater purpose beyond what we can see. Break us! Mold us! Make us new!

Caed's day was pretty typical of the last several days. Not too bad...not great either. He did however sleep well last night. Only woke up once in pain, but quickly went back to sleep. Then woke up in a good mood this morning. It wasn't long though before the pain/nausea/screams began. They typically don't last very long, and usually after he throws up, he is fine. At one point he wanted to go outside (still with pj's on). Todd flew in this morning, so he was wanting to show his daddy the turtle in the pond. When he's still hooked to his TPN, we just put it in a backpack and he has to carry it around. It can be pretty heavy (with the TPN bag and pump). He had some good moments today filled with smiles, silliness, etc... We try to cling to those to help us get through the bad ones. When we put him to bed he was a running a little fever. Hopefully, it's nothing.

playing golf with Daddy and Reagan


Did he make it......?

Sat. 5/18 - update

I'm going to post early tonight, so maybe I can get to bed at a decent time. Our day has been "eventful." I have already told you about our night ("Hear My Cry, Lord"). The day has continued to be the same. Lots of screaming, crying, throwing up, etc... The anxiety/anger/fear produces crying which in turn produces the throwing up. We are hoping this is the explanation for all the vomiting. Caed's TPN started leaking this morning (the "clave" is the connector between the broviac tube and the medicine line). That's where it was leaking from. We tried many different things. However, after his nap this afternoon I was hooking up a new med and it started leaking blood. They had told us when we left the hospital the first time that if we ever saw blood from the broviac to go to ER. I called our HH nurse, and she told me to do the same. So....about 3:30 we headed BACK to hospital!! I truly didn't think I could continue on at that point. I was asking God, "WHY??? WHY??" Not now. Things were going so well! When we got there they rushed us into the trauma room and about 4 nurses and the dr. came flying in. It definitely didn't help my already high anxiety level. They did a chest x-ray to see if the line was ok. While waiting for those results, we started believing it was just the clave that had a crack in it. Easy fix. Finally, they put a new one on, and that was it! So....we got to come home. While we were loading Caed in the van, we ran into Dr. Goldthorn in the parking lot. What an awesome God! That definitely wasn't coincidence. She wasn't even on call this weekend. We were able to talk to her about some of our concerns (Caed's mental well-being primarily). She said she would call someone she knew who specializes in Pediatric Behavior. Hopefully we will hear something soon and can begin the process now of healing Caed's mind. (which affects his body) Right now he is outside feeding Timmy (the pond turtle). He is calm as of now. I pray he can stay that way. Thanks for praying!!!! We love you all!!



Caed and Grandmother Mitchell
feeding the turtle



Reagan & Bergan (aka. Hannah Montana)

Hear My Cry, Lord!

Out of the depths I cry out to You, O LORD; Oh LORD, hear my voice. Let Your ears be attentive to my cry for mercy. (Psalm 130:1)


Last night was a very tough night. Caed began screaming at 2:00 am and it basically lasted all night and morning. I do not mean "crying all night." There is a huge difference. I am surprised that he even has a voice this morning. I gave every medicine that was available. For the most part, all I could do was sit and listen. I don't think I've ever had this feeling before in my life...one of such helplessness, torment, and anguish. He had been having such good nights/days lately. Why God? What is wrong?


There is another aspect of Caed's illness that we don't talk a whole lot about. It's too hard to fully describe and understand if you are not with him 24/7 like we are. We have known that he will most likely develop some post-traumatic stress from all this. We have seen signs of it from the very beginning. I am not sure what Caed's screams are from. Is it anxiety, the pain, being "mad" that he's hurting, frustrated that he isn't able to do the normal things he used to do...? Probably a combination of all of those plus more. This is a pretty obvious statement, but "when Caed feels good...he is his normal self." (emotionally) But, when he isn't, this "other Caed" comes out. I think I have shared before that under normal circumstances (before all this began), he was not allowed to act this way. Ever! Nor did we ever see him "throw a fit" to this degree. That is one of the hardest things for me through this. I am learning how to deal with it better, but the "mommy" in me wants to spank his bottom!! Not only is he suffering physically, but also psychologically. It's one thing to deal with it when it's just us hearing it, but when others are around (whether nurses, drs., visitors, etc...) it is VERY hard. I know they do not know the real Caed nor understand fully what this has done to him. For all they know, he's just a spoiled, rotten brat. Oh, that's hard for me to accept. I know it doesn't matter what others "think," but I promise you would feel the same way. Something you have spent his whole life training, now is something you cannot do anything about. Our parental nature tells us to fix it with discipline. We cannot.

During those times that Caed is screaming and hitting and fighting, I feel myself doing the same thing inside. I want to yell at the top of my lungs, kick the bed, and hit the wall. The Lord reminds me that I am also fighting a spiritual battle. Satan is bringing doubt, fear, resentment, bitterness, and frustration into my heart.

Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. (Ephesians 6:10-12)

Please just continue to pray for Caed's physical body to heal. Like I said, when he feels good...he is good! (not that he was perfect before, but he was a happy silly little boy!) But, also please keep his mind in your prayers as well. Not because of what others will think...but because we miss our little boy! Pray for patience and a calm spirit for me. (sometimes you can only take so much) Pray that I will put on God's armor daily.

Sat. 5/17 - update

...and their joy was very great! (Nehemiah 8:17)

This picture sums up the last couple of days. To be able to see this smile again as much as we have has been a gift from God! He has had his "normal Caed moments" throughout the last 2 months, but they usually didn't last too long. However, the last 2 days we have "seen Caed" for about 3/4 of the day! He still has moments of pain/vomiting, etc... but even those are lessening. We also plugged up his G-tube. It has not drained now for 2 straight days!! MAJOR progress! That basically means his stomach is pushing fluids through. He is suffering from acid reflux pretty bad, which makes him throw up some and also is causing major pain. (from his esophagus being raw) They have started him on some more meds for that, so hopefully it'll get better. Caed and I had such a wonderful time this morning. He wanted to go back to 3rd floor to see some of his nurses and while up there we stopped in the playroom. We played for such a long time. We shot baskets into the wagon. He was on the "T-Tech" team. He kept telling me he was going to get really good once he got bigger. He was doing and saying everything the way I remember him "before." Joy was literally bursting out of me! I have missed him SO VERY MUCH! After we got back to our room, the drs. came in and we discussed several things. Their plan was to reinsert the J-tube (intestinal feeding tube) on Mon. After the progress Todd and I have seen this week, we decided to ask them if we could hold off a few days. Caed has had 4 different feeding tubes...all of which have failed at some point. We're not saying that we don't want to try it again (if absolutely necessary), but right now, we're PRAYING his body is healing and we don't have to resort to it. Please join with us in praying for that specifically. His stomach is obviously dumping (better), the vomiting is much less, so we're just praying we can gradually start encouraging more food and it WILL STAY DOWN!!! The drs. were absolutely in favor of giving this a shot since we are seeing such improvement in other areas. They also told us we could go home today!! Finally, after getting all the Home Health squared away, we left about 6:00. He was exhausted tonight because he didn't get a nap today. Our HH nurse came tonight to go over all the new meds. (he's on 2 new antibiotics, so she was teaching me how to administer those.) I have a feeling it's going to be a very LONG week! I will be getting up about every 3 hrs. to do all the meds through the night! I guess since I missed out on all of Caleb's nightly feedings, I'm getting this opportunity instead. ha! At least it will only be for a week or so (we pray). We also are guessing Caed got the staph infection in his broviac this past week while home. The nurse said it's everywhere, and that it wasn't anything we did wrong. She told me how to protect it better now. So, also pray we don't keep having to fight that.

I am exhausted and it's going to be a short night for me, so I better go get some sleep.

Brad and Krystal....we love you guys! We thought about you all day and wished so much we could have been there to celebrate with you. We are SO sorry we had to miss the wedding! Please know we were there in spirit. Caed kept giving me a funny grin everytime I talked about Uncle Brad getting married today. Have fun in Mexico!!!

2 very special visitors


Do you think he's seen ET too many times?


He sure missed his brother! (and sister too)

Fri. 5/16 - update

I don't have a lot of time tonight. Got to get back to hospital, but here's a quick run down: Last night after I left Todd said he did great. The G-tube remained closed the entire night...never threw up the chicken or ice cream. That is HUGE to us!! He has NEVER done that before. This morning he continued to do well. Then around lunch time I wanted to try to see what more food would do. Grammy went and brought us McDonald's. He was very excited. He ate 1 bite of chicken, 1/2 a fry, and 1/2 an apple slice. About 30 minutes later....it all came back up! I was so disappointed. The rest of the day hasn't been too bad. He has still thrown up several more times throughout the day, but nothing ever came up. (did that make sense?) We are wondering if it's the acid reflux that is causing him to do that. We may get to go home tomorrow sometime, but then possibly come back Mon. for another procedure. Not sure how long they will want to keep him then. It is getting hard going back and forth, back and forth, but we know this may just be the way it is for awhile.

Hopefully, I can write more tomorrow and also put some pictures on. It wouldn't work tonight with the computer that I'm on. Thanks for continuing to pray!! Maybe it's just wishful thinking, but I just feel so strongly that things are going to start turning around soon!!!! Please God!!

Thur. 5/15 - update

Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith...
(1 Peter 5:8)

ok...first off, I have realized I have a new prayer request! I have spent over an hour trying to sign in to the blogger website to write my daily update. It wouldn't work. Something was wrong with the website. It dawned on me that satan must be trying to stop this from going out. Please pray that he would not have the ability to do so again.

Now, about our day: Goodness where do I begin? Todd said they had a good night last night. He slept the whole night, no pain/vomiting. This morning when I got to the hospital he was doing fairly well. But, after awhile began hurting. They decided to give the suppository. We have had this exact same one two other times. Never any problems. Dr. G warned us that it could cause bad cramping, but since he had it before, we didn't worry. About 30 minutes after he got it, we did get our 1st BM in 6 days! Thank you God. However, then the cramping started. It lasted for over an hour. It was one of the worst pain spells he's ever had! One night in ICU (when he had a bad drug reaction) was the closest to this. Even in ICU that night, I had to leave the room because it was too much for me to watch. I was literally getting sick to my stomach. Well, today I was alone. I couldn't leave. As I sat there on his bed rubbing his head with a cool cloth, I had to do everything in my power to keep from breaking down myself. I wanted to just CRY! He was in such severe pain and kept asking me when it was going to stop. I couldn't answer...I had no idea. I just prayed, "Lord, PLEASE deliver him from this! Give him rest!" Several nurses even came in to try to help. There was nothing anyone could do. Only time would help. We had the same nurse from yesterday, and at one point while Caed was screaming out in pain, I heard her a few feet away praying outloud for the Lord to take this from him!Finally, after that long excruciating hour, it began to lessen. He finally fell asleep for maybe 30 minutes. Then...a little while later, of course, guess who comes knocking on the door? The guy needing to draw blood! When they need blood, they always just get it from his port. No pain. However, if there is an infection in it, they need blood from another source. He had this done before and it was horrible for him. They use the lancets on his finger. May not seem too bad, but for a 4 yr. old, it's awful. However, with tears streaming down his face, he held up his hand and showed the guy which finger he could use. It absolutely broke my heart to see him trying to be so brave and yet so incredibly scared. The last time Caed had to do this, he held on to those fingers for days and kept talking about how bad it hurt. He KNEW what was coming. He did good, and it was over....at least for a few hours. Then another knock on the door. They needed more blood. I hated it for him! On any other day, this may not have been so bad. But after the afternoon he had, adding this to it, was awful. Finally...he rested a little more, and then.....what a GREAT night we had!! Oh God, he needed this so much (as well as Todd and I)! He was in the best mood, talked with the nurses, went outside, walked up to 3rd floor to chat with his other nurses, played in the playroom, etc.... This was the most I have seen him be "normal Caed" for this length of time. It was so good to see. And sometimes I would catch myself almost pretending he was well, normal, totally healthy! It was good to leave tonight on such a good note. Also, another praise: he ate 3 bites of ice cream and 2 bites of a chicken nugget. Normally, after 15-20 minutes of eating, he either just throws up or gives us the "sign" that he is hurting. Then we drain his G-tube. Not tonight. He ate those little things, and with G-tube clamped he went probably 2 hours of zero complaining. Hopefully, Todd can report to me in the morning that he went the whole night too! As far as us leaving the hospital...not sure when now. The blood culture still isn't back, although most all the drs. feel it is another staph infection in his line and are already treating it with antibiotics. (also no fever today!) His GI dr. did give us a little bad news though today. People can live on TPN (IV nutrition) but the longer you are on it, the more likely it can start causing liver damage. They have been checking his blood twice a week this entire time looking for those type of signs. Well, today he said they are beginning to see enzymes in the liver! So...we have to get him off that TPN ASAP! The only way to do that is for him to eat! (or try the J-tube again and feed his intestines that way for awhile) So, he is going to talk it over with the other drs. and possibly look at doing a little surgery the beginning of next week to insert the J-tube (directly into intestines this time).

When I left this evening I was overall very encouraged. We have so much to be thankful for! Many positive things are happening. We truly believe his body is starting to heal. However, there is also that side of me that knows we still have such a long road ahead and also fearful of the "what ifs." We have had "plans" before and for various reasons they didn't work. We pray that all the failed attempts are a thing of the past. Please God, help these new ones to work!!! I know Caed is so tired and scared and just wants to feel good again. Please help him to be the full-of-life little boy you created him to be!

Todd flies out in the morning. We feel things have settled down enough for him to leave now. Please also continue to pray for him. He lost a couple of days (working) and has lots on his plate. He is feeling a little stressed. Also pray for me as things can get hard when I'm by myself. (just having to "live" at the hospital night and day for several days can get old)

Thank you God for overcoming the enemy and having victory in this blog being sent out tonight!


Finally the pain was gone and he could
rest for a minute! (before the "blood
man" came in)


Caed in front of the hospital


Caed and his buddies...Sulley & Mike


We had taken all his toys home from the 1st time.
Today one of the Child Life girls came in and gave him
something to play with. He is drawing ET!! (his
newest obsession)


This is what I came home to this evening:
Grandaddy and Caleb rockin' out on
the steel guitar!

Mommy's Prayer for you

Dear Caed,

Well, we have been on this road now for 2 1/2 months. In some ways it has gone by so fast, and yet others, it is though time stood still. My heart is FULL! I'm not sure I even have the words to communicate what I am feeling. God, help me! Today, we had to go back to the hospital. We had been home 10 days, and boy was it tough driving there early this morning. We didn't know what lie ahead, or if we would have to stay again. Today we did something that you and I have done so many times before. It has just become routine. You had a certain procedure you needed done in another area of the hospital. They came to get you, and something we learned a long time ago, is for me to sit in the wheelchair and you to get up in my lap. I guess it gives you comfort and security being so close to me. (what you don't know is that I need the closeness as much as you do!) As we were being wheeled down the very long, familiar hallway, these thoughts came to me and I wanted so desperately to write them to you. I know right now you are too young and do not understand, but I pray someday you can look back at this and read it and know my heart.

Caed, as you probably know, you were named for a Christian band that Daddy and I really like, Caedmon's Call. We have had so many people ask us about the spelling of your name since being at the hospital. I have had to explain it more times than I can count. God has used it to speak to me now 4+ years later. Many centuries ago, there was a man, named Caedmon. He was one of the first poets to use "repentance" as a theme. It was his "call"....his passion....for others to come to know the saving power of Jesus Christ. YOU also have a call on your life! (as we all do) What are you going to do with it? Will you ignore it or embrace it and RUN? Caed, right now you are 4 years old. I am not expecting you to understand this. Daddy and I's prayer is that someday you will! God is using YOU, a little 4 yr. old boy to draw others to Himself. We absolutely hate what you have and are continuing to go through!! You are dealing with things that most grown ups will never even face in their lifetime. If it was up to us, we would take all this from you in a heartbeat. But God is reminding us daily that HE CHOSE YOU, Caed, to carry this enormously tough burden (filled with lots of physical pain, fear, anxiety, anger, frustration, confusion, and sadness) for a very special purpose. We don't know what that is right now, and we may never truly see all the ways He has used this, but we are not called to always "see." He commands us to simply "walk" by faith the road He has set before us. We do not know when or how this particular road you're on will end. Lord willing, you are getting close! BUT, we know He has a plan and there are so many people He is wanting to touch through this experience. Caed, did you know hundreds, if not thousands of people are praying right now for YOU? So many that do not even know you, have never met you, only know you are a 4 yr. old little boy who is very sick. Isn't that awesome? I know as I write this, you are most likely asleep up in your hospital bed completely unaware of all these things. One day, Caed you will. What will you do with it? Will you sit back and be complacent, or will you embrace it and RUN? Your Daddy and I pray for your future. Not necessarily one of ease, but one of great purpose!

"Oh, Lord, use him to bring others to a saving knowledge of You. Use him to bring those who may have fallen away back to Your arms. Use him to draw Your children into closer fellowship with You. Use him for YOUR GLORY ALONE!! He is not ours...He is Yours!"

We love you Caed more than you will ever, ever know! We thank God for allowing us to be your parents. What an undeserving privilege!

To the moon and BACK!
Mommy

Wed. 5/14 - update

Well....we had another full day. It started last night after Caed went to bed. He slept maybe 3-4 hrs. and then began waking up every hour in pain. Finally, around 2:30 am, when I went to him I felt he was burning up with fever. His temp was 103! Then, we noticed his G-tube draining was a green color!! (hasn't drained bile in a long time) So, with those 3 factors: pain, fever, and green drainage, we decided to take him to the ER. They took some blood cultures first off and found that his white and red blood cell counts were normal. Praise God!! Our guess is that there is an infection in his broviac (catheter) again. Those cultures take 24 hrs., so we don't have those results yet. If so, it can be treated with antibiotics again. We also think we uncovered the mystery of the green drainage. While still in the ER, we drained his tube and it came out clear/yellowish (normal). Then, it dawned on me that Caed had taken a few sips of blue PowerAde before we went to bed last night. You know the commercial...yellow and blue make GREEN!! (we have officially learned our lesson - no more blue drinks, snowcones, jello, etc...) Again, we praise God!! The final question was the pain. They decided to admit us back into the hospital so we could have some testing done. (& also wait on the blood culture) We are now on 2nd floor, but we got the big room again! It sure does look different when it's empty! Our GI dr. came in this morning and told us NOT to bring any of our stuff back up here! (meaning...they didn't want to see us having to "live" here again) Caed slept from 6am - noon. He was exhausted! Todd and I got a little sleep as well (45 minutes or so). They came and got us around 12:30 to head for radiology. Caed did pretty good. He still got scared, but we tried to reassure him they just wanted some pictures of his tummy. Instead of him having to drink the barium, they just inserted it into his G-tube. (MUCH better!!) We stayed down there for a series of x-rays for a little over an hour. Dr. G came rushing into our room later this afternoon and was SO excited. She said it moved through his system in the same amount of time it takes a "normal" person. When we have had this done before, they usually bring us back up to the room and then bring a portable x-ray machine all throughout the day and even night. What has taken 12+ hrs. before, took only 1 hr. today! Praise God!! She said she kept thinking she was looking at someone else's x-ray. There is however a small portion of the sm. intestine (duodenum) that looks very irritated. She thinks that might be the cause of some of his pain as well. She will get with our GI drs. and discuss the treatment plan. Also, she said she feels very strongly that he has reflux. (again though something treatable with medicine) She's still concerned with the vomiting, but was VERY encouraged by today's testing. Hopefully it has shed some light on what needs to happen next. His stomach is still sick, but she said it is dumping. (something we weren't so sure of before) He hasn't had a BM now in 5 days! They will give him a heavy duty suppository in the morning. (it has always worked before) They also saw lots of gas throughout the intestine, so maybe that will be helped also by the suppository. We are still a long way from a full recovery, but we took some MAJOR steps forward today. In Lubbock this afternoon it was very stormy. That's how we felt this whole day. (frustrated, scared, sad....) Then, all of a sudden the clouds moved back and the sun shone SO brightly! Again, a reflection of our day after the dr. came to talk with us. Praise God!! The plan as of now is to spend the night here, and hopefully get some answers in the morning about the infection and also a BM! Then, we expect them to let us go back home. She said we could administer the antibiotics there.

Nancy, I think you prayed in your comment today about God sending us a messenger of encouragement. Well, He did!! Over the 66 days we spent here, we thought we had every nurse possible. Nope! God saved one very special one for today! She began sharing with us about her son having 9 surgeries starting at age 4 and everything he went through. She began preaching a sermon...it was incredible. Such strong encouraging words! She reaffirmed for us that God has a very special calling on Caed's life and we better "get ready!" She told us things that I have heard over and over throughout this whole ordeal, but hearing it today was like God telling it to us for the first time! I cried and thanked her...and then we were off to radiology, not knowing what they would find. Later, after we were back in our room, she came in, grabbed my hand and began praying over Caed. It was JUST what we needed today and we thank God for saving her for just the exact moment we needed it. One thing she reminded us of, and I kept humming the song to Caed down in radiology: "His eye is on the sparrow, so I know He watches me!!!" What started out as such a scary night/day, has now ended in one of PRAISE!!!! Oh Lord, YOU are Faithful!

Tues. 5/13 - update

O LORD, hear my prayer, listen to my cry for mercy; in Your faithfulness and righteousness come to my relief. (Psalm 143 : 1)

This has been a very long day, beginning about 5 am. Caed woke through the night a few times in pain, but then was up with severe spasms at 5. It has basically lasted ALL day! By noon, I called his dr. Then, things began getting worse, so I called again this afternoon. She wanted us to come to the ER right away. We were thinking it had to do with his G-tube. It just wasn't draining like normal. For 3 hrs. this afternoon, we had him on a continual drain and maybe only got 20cc. Not good. That's when we headed for the hospital. We were praying it was something simple. But, yet I packed my bag (just in case). Once we finally saw Dr. G, Caed had fallen asleep in my lap. He was exhausted from a pain-filled, no nap day! They replaced part of his tube and also gave us some suppositories. (he hasn't had a BM in 4 days!) She said if he wasn't better by morning, she would probably want us to come back for upper GI, etc... Once we got home, things were NOT better. He screamed in pain for the remainder of the evening. We debated whether to go back again. Finally, he looked at us and said he wanted to go to bed. We gave him lots of medicine, so hopefully he can have some relief and get some much needed rest. I have a feeling we will be back to the hospital tomorrow. Which is ok. I would rather find out if something is going on, than just wonder. However, Todd flies out early in the morning. Please pray for that situation. It is VERY difficult for him to have to leave when things aren't going well.

THANK YOU! THANK YOU! THANK YOU!....to all my prayer warriors out there! As soon as we got in the van to head to the hospital I texted several of you. We just simply wanted you to be praying! You did and we thank you so much! We are so glad to be home tonight even with Caed not feeling well. Now please just pray for tomorrow especially. Pray that any tests he has will be clear. Dr. G made a comment today and said she thinks his tummy is TRYING to get better. That may not make sense with him in so much pain and all, but hopefully....she's right! One positive thing is he is not throwing up bile anymore. Also, if you're reading this tonight, please pray for Caed to sleep well. He so desperately needs good rest!

There are so many things I could write about tonight. Many thoughts are racing in my head, but my BODY IS WEAK! I am very, very tired. Todd and I also need some good rest. I guess you have figured out by now, there was no Tech game for us today. (thank you anyway Russ!!) God just had other plans for us tonight. Not sure I liked the change, but.....He has his reasons. ha! I am learning more about "His plans" more and more each day.

Mon. 5/12 - update

Another very tough day...

This morning as we drove to the hospital, Caed began crying. We tried explaining that it was just a visit and that Dr. G just wanted to say hello since we hadn't seen her in awhile. The majority of the "check-up" would just be Todd and I talking with the dr. He just didn't seem to understand. She didn't have a lot of new information at this time. We have seen some progress over this past week, but the last 2 days have also been pretty tough. It's just so hard pin-pointing the problem. Several days ago he wasn't throwing up much at all. Now, it's quite frequently. She gave us some things to start trying with his G-tube. We'll see if it makes any difference. We also saw his GI dr. as well. He plans on going down on his TPN some. (I'm guessing now to 18 hrs./day) Then when we got home his nurse came to do her stuff. (draw blood mainly) This little guy had an anxiety-filled day!

Right now as I type, Caed is sitting on the couch with Todd and Reagan and they are laughing, being silly, watching ET (for the 50th time!). You have NO idea how much we cling to these "normal" moments. They don't usually last long. Especially today...Caed was in a lot of pain and threw up quite a bit.

I don't even know what to say. There are days we are on the biggest high and Caed is seemingly doing great! Then, the next thing you know, we're going backwards..... (or so it feels)

God, give us strength to endure these tough days. Give us patience when we don't see progress. Give us unconditional love for Caed when he is "fighting" us. Give us peace through this storm.

Thank you for your words of encouragement and prayers. I know we will get through this! Please pray specifically for tomorrow. We have been given tickets to the Tech baseball game. We truly don't know from one minute to the next how he will do, or if he will even feel like going. I know it would be so good for him and us as a family to just go do something "fun." The game is at 5:00, so please pray that he will feel well enough to go and also able to enjoy some of it. (I feel certain he will not be able to last the entire game)

Sun. 5/11 - update

Today was an extremely emotional day for me! There were definitely things that triggered it, but I'm not sure if this is just another "bump in the road," or if I've hit another wall. Regardless, it was tough, and I am weary. I definitely do not wish to go back to the hospital, but "being home" has been very hard on me. I am enjoying being with Reagan and Caleb more, but to that comes added responsibility. Don't get me wrong, I am not taking care of them by myself. My parents are doing TONS! Just the little things that we did not have to worry about in the hospital: doing laundry, feeding kids, cleaning up, etc.... I want to be doing all the normal stuff again, but I also still have a critically ill child. Sometimes just dealing with Caed alone (physically but especially emotionally) is almost too much for me to handle. I feel like I am constantly having to pass Caleb off, and Reagan, well....she keeps getting put on the back burner (from me!). It absolutely breaks my heart. I am feeling pulled in SO many directions! A burden I'm putting on myself. It's been almost 3 months since I've stepped foot in my own house, slept in my own bed, cleaned my own kitchen, made any kind of meal, gone to church, or just simply had the 5 of us together in our HOME! Oh, how I miss my old life. Such simple things that I know I took for granted. Right now in my head this road we're on doesn't have an end in sight. I guess that's what makes this so hard. I just don't know how long I can hold on. Again, I know I'm just overly tired (emotionally above all else). Dear God...pour Your Grace on me!!

Caed did not have too great of a day. He seemed to be in more pain and threw up more. We have an appt. with Dr. Goldthorn in the morning, so hopefully she'll shed some light on these concerns. I'm not sure what all the appt. will entail; whether it's just "check-up" or x-rays, etc... Please pray for Caed emotionally. We have not told him about the appt. yet. No need to get him worked up before time. Her office is there at the hospital. Not sure how he'll react having to go back.

Todd got in just fine (although came very close to missing his flight). It already is so good just having him here to lean on. I'm sure he wasn't quite ready for the emotional basket case that I was in. Hopefully tomorrow will be a new day.......................

Sat. 5/10 - update

I would have despaired unless I had believed that I would see the goodness of the LORD...Wait for the LORD; be strong, and let your heart take courage.
(Psalm 27:13-14)



This was the verse for today in my devotional. How fitting! Thank you God that You speak intimately with ME (little old Lori) and know what's in my heart and what I needed to hear. These last couple of months have been extremely difficult, but even before all this began, there were things in my life that I had been very burdened by. Various things...I'm sure each one of you reading this have very similar concerns and burdens going on in your life as well. The Lord has been working on me, trying to teach me and show me His Faithfulness for quite awhile now. It's just a part of life. However, when times get hard or we don't understand God's ways, that's when "life" can sometime seem hopeless. We can't see the future. We don't know how or when the rest of the story will unfold. It's scary. This is where I personally find myself now. "God...I want to TRUST YOU! I know Your plans for me are great. They are ones that I myself couldn't even dream up or think were possible. Please help me to be still...to leave all my worries, concerns, questions, and "what ifs" at Your feet. I want my hope to solely be in YOU, not my circumstances. And even though I KNOW all these promises in my head; Lord, I plead with You to make them a reality in my HEART!!!!!" Peace be still...



Show me Your ways, O LORD, teach me Your paths; guide me in Your truth and teach me, for You are God my Savior, and my hope is in You all day long.
(Psalm 25:4-5)



Thank you for reading Caed's blog each day. For simply loving him and us enough to take time out of your busy day. Thank you for (unknowingly) giving me an outlet. When this first began, it started out as 2 bulk emails sent to our close family and friends updating them on Caed's condition. Then, it turned into a daily blog. People have told me not to feel burdened with having to do this each day. What they don't understand is that God knew I desperately needed to "vent," and He created this especially for me! Honestly, nothing would change if I found out no one was even reading the blog. Not only do I cherish "Caed's daily medical updates" for us to look back on, but truly the opportunity to just lay my feelings out there. I used to be a big journal writer through high school and college, but am now rediscovering how therapeutic it is for me. Thank you again for allowing me to do so.

As far as Caed today: some bad, but a lot of good! He gets "unhooked" from his TPN usually from 4:00 - 9:00pm. He was outside 90% of that time. He did very well. He ate a little ice cream, pizza, and a chip today. (however...most all of that came back up) That part is very frustrating!! Dr. G said that's to be expected - it will just take lots of time. But, when you see him improving in so many other areas, you just want his stomach to do the same. His G-tube draining amount doubled from yesterday! Not sure why. I was really excited to see that number going down each day. Really can't pin point what may have caused the difference. Caed is learning our daily routine pretty well now. He is also getting used to Nurse Mommy messing with all his tubes. When I was hooking him back up last night and doing all the meds into his port, he turned to Reagan and said, "Hey watch me! It doesn't even hurt." The reason we laugh at that is because he's been having that EXACT thing done to him for the past 70 days! Now, all of a sudden he plays the "brave card." He and Reagan played very well together today. I would almost forget about them (if I was dealing with Caleb) and then listen out the door and hear some very familiar dialogue from days past. It was SO good for both of them. I know they have really missed each other! Even though we are here now, Caed isn't the same. (physically VERY limited!) Virtually nothing is how is used to be between them before all this began. So, the little time they do have to "semi-play" like they used to...is golden!

Todd will fly back in tomorrow evening. We are all very ready for him to be here!!