Praise You in This Storm

I have so much I want to write about, and yet for the last several days, I have felt completely paralyzed. I don't even know where to begin....

The last 6+ weeks have been a gradual nightmare that I begged God to please stop. The amount of pain and the severity of Caed's attacks got to the point (up until hrs of boarding the plane to NE) that I couldn't continue sitting helpless at his feet watching him suffer. I was desperately needing to cash in my 'good actress card.' Even though the sbs, colonoscopy, and endoscopy all showed his bowel looked ok (minus the finding of the hiatus hernia), we still felt it had to be Short Gut related. As I began explaining to the IRP team at UNMC what the past 6 weeks had been like for Caed, immediately Dr. M asked, "Does Caed still have his gallbladder by chance?" Gallbladder! What in the world are you talking about? No other organs need to be discussed here. ONLY bowel! I knew during Caed's initial surgery 3 yrs. ago, the surgeon did remove his appendix (along with the majority of his intestines). But, I didn't remember them ever mentioning the gallbladder. They immediately scheduled an ultrasound to find out, as well as keeping a close look at the pancreas. Caed was very scared about this "new test, " but later informed me it was now his favorite! Mine too. The dark, cool room.....with the hum of the machines lulling you to sleep while someone gently oozed warm jelly all over your tummy and back. It lasted almost 2 hrs, and Caed dozed off more than once. Todd and I of course were feeling torn. Nothing wrong with bowel = GREAT NEWS! A problem with entirely new organ = sick to our stomachs. Obviously, we knew between gallbladder and pancreas, we definitely wanted it to be gb. At this point, I knew our 3 day scheduled trip to UNMC was going out the window in a hurry. I was alone and scared.

Meanwhile, while all of this was going on with Caed......our dearest UNMC friends from NZ had just lost their 5 yr. old daughter. This wasn't supposed to have happened. They had journeyed long and hard to get to the US for Aria to have a shot at life. (multi-organ transplant x2) God had done amazing things in this little girl's life. He indeed had preformed miracle after life-saving miracle in her 5 short years of life. My heart was absolutely broken. Broken for a hard fought battle that had been 'lost.' Broken for this amazing Dad who had to let his baby girl go. And broken for a Mom who held her one and only daughter in her arms as she went to be with Jesus. This was my friend. I couldn't even fathom the pain, the grief, the hurt, disappointment....coupled with the joy, HOPE, and unspeakable peace they were dealing with. The timing of our trip to NE was 100% providential. Our apt wasn't scheduled for 3 more weeks. But, due to the (gallbladder) attacks Caed was having, it was imperative we get there ASAP.

God knew.

He knew 4 friends needed each other. He knew we each needed comfort and encouragement. We needed to say good-bye..........

I needed more last week. I needed a reality check. I needed perspective. As much as my heart was hurting for Caed, I needed to be reminded of families who would long for a simple gallbladder removal surgery. My fears then turned to thankfulness. I was thankful for God's mercy on my son. Selfishly....thankful for my 'normal, healthy, thriving 7 yr. old.' Sure, Caed has issues, chronic ones...but he is alive. Guilt soon began flooding my soul. WHY GOD? WHY?? Why do you spare some children and allow others to suffer.....suffer hard? We will never know the answer to this question and many others like it this side of heaven. But, maybe I got a glimpse.....

Aria's funeral was streamed live on the internet. Chills raced down my spine as the picture loaded and I could see my friends sitting there on the front row. Across thousands of miles and many time zones. There I was. (Seemingly) sitting right up in the balcony overlooking the congregation below. Puddles of tears formed on my kitchen floor. My heart was exploding for Anita and Hamish. I simply couldn't imagine the pain they were feeling at that very moment. The denial. And yet....the tears fell harder and longer as I watched these precious 2 raise their hands and sing PRAISES to their Holy, Faithful, Loving God. He was there! He was holding them up. And He was TRULY honored in that service. Maybe I had it backwards. Maybe Aria was the one that was 'spared.' And Caed is the one that is still left to suffer on this earth awhile longer. Either way, God knows and He has a plan. A plan that will bring Him the most honor and glory. We PRAISE Him for Aria's life. I think it's impossible to count the number of people (ALL over the world!) that God lovingly allowed this little girl to touch.



Hamish and Anita have become our life-long providential friends. The story of how God led us to each other is.....amazing! We don't know when/where our paths will ever cross again (face to face), but the unlikely friendship that was formed 2 years ago.....will last forever. We love you both SO very much!!

Now, back to Caed. The ultrasound showed everything to look great....except the gallbladder. It was enlarged, contracting, had very thick walls, and just didn't look right. So, what do you do? Take it out! I knew this was a very common surgery and people could live normal lives without them. However, Dr. M decided against doing it laproscopically and instead would cut on Caed's original incision. He wanted to take a liver biopsy (his numbers looked good, but just something you want with these SBS kids when you get a chance). Todd was able to fly up the Thurs before the surgery and stay through the weekend. Such a blessing! I was really nervous about telling Caed. This time he wasn't in shock.....bleeding internally....and close to death. We had 2 days to think about it....dwell on it, and allow our minds to go to places it shouldn't. Memories, awful memories flashed in my mind continually. We hadn't experienced "easy" surgeries and hospital stays. My mind couldn't fathom what that would be like with Caed. But, we simply had to trust God and remind ourselves Caed was still being held ever so tightly in His arms. He hadn't let go...even 3 years later. The day of the surgery was very difficult. Caed was now almost 8 years old. He had past experience and knowledge of things that 'happen' in hospitals. He knew being put on a gurney was a scary thing. He knew he would be wheeled away....alone.....with strangers, and that pain would occur. He was SO brave. Fear filled his eyes. He whispered for us to please help him. To make it all stop. And continued saying over and over how he just wanted to go home. 'Good actress card' had to be pulled out yet again as I remained cool, calm, and collected and reassured Caed this would be 'quick and easy.' (even though my heart was screaming the exact same words as Caed)

The surgery was successful. Lasted almost 2 hours. Pain did indeed pay Caed an uninvited visit over the next several days, but he was so strong and brave and did exactly what the drs and nurses told him to do. As Caed recovered those next few days, I caught myself just starring at one amazing little guy. My heart was so very proud of the person he was. He has had to endure so much these past 3 years, and yet you would never know it. His personality is magnetic. And I knew God had such wonderful plans for his life. At the same time.....my heart was also so very broken. He is 7. These past 3 years have been filled with so many tests, procedures, surgeries, medications, tubes, lines, sticks and pokes. What will be next? Yes, this surgery fixed our current problem, but will it just continue...? One problem after another for the rest of his life? Again, thankfully I don't have the answer to that question. Only ONE person does, and it's imperative at times like these we don't forget that. That ONE person has promised that He has plans for Caed's life. Plans to prosper him. To give him a hope and a future. We have to cling to those words. To trust.

Caed is most certainly our Rockstar! He is healing wonderfully. Back to his old self...minus a little slower and hunchbacked. The awful pain that he had been suffering with the past 6 weeks....is GONE!!! Praise God! We truly hope the gallbladder was the cause and now is taken care of. Caed will need to 'take it easy' the rest of the summer which will be a chore in itself for Todd and I. (please pray for us! ha) I think Caed understands....but again, he's 7.

And by the way....we have learned that this was Short Gut related. Over the past week, so many of our SBS friends have confirmed this as their children also had to have their gb's out at some point during their journey. I don't remember the entire anatomy lesson Dr. M explained to me...(or was it actually that most of it went over my head?), but it has to do with the ileum, bile salts, and gallbladder. Since Caed does not have his ileum (section between sm and lg bowel) anymore.......the gallbladder most always goes 'bad.' Dr. M said when he performs surgery on these kids for whatever reason, he always removes the gallbladder (even if it looks perfectly healthy). The surgeons here in Lubbock who took out Caed's bowel initially were not looking long term. They were not thinking "short gut life." They were solely focused on saving Caed's that night. And for that, we are thankful.

We are home. Ready to finally start our summer. I, on the other hand, came down with a case of shingles while in Omaha. I wonder how that happened?? ha I certainly have not been under any stress this past month.... I am hurting pretty bad, and medicated.....but once again questioning God's timing. ;) This too shall pass.

Here are a few pictures from Caed's homecoming Wed night. As my dad, Caed, and I made our way home from the airport, this is what was waiting for us. It was SO sweet. 12 friends/cousins painted signs for Caed and hung them on the bushes, front door, and walkway. Tears fell again that night. I was reminded of God's compassion and how He provides just what we need when we need it most. This was simple. Created by children. And yet exactly what my heart needed right at that moment.

We have been overwhelmed once again at the outpouring of love and concern for Caed during this time. Our hearts are FULL! And we are truly humbled by the thoughtfulness and generosity of so many. Our cup runneth over......






I will leave with Caed's theme verse:

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)

....which is how we can still praise You in the storm!

Post-Op

Caed's surgery lasted about an hour and 1/2. All went well. Dr. M cut on Caed's original incision, removed gallbladder, took liver biopsy, and cleaned up a few adhesions. Caed is recovering as expected. Today was hard, but he has been super brave!

I have MUCH I want to write about.... This week has been tough. REALLY tough! Foremost in our thoughts is Anita and Hamish. They lost their little girl on Monday. We had a sweet time together on Thurs, but my heart still aches so badly for them. Then....everything Caed has gone through. This surgery was not on our agenda when packing our bags for Omaha. I am thankful for it, but just wasn't prepared.

I will write more.....when I can. THANK YOU for all your prayers!

Surgery #4...

is set for Friday. This one however, should be MUCH less "traumatic" than the last 3. Caed will have his gallbladder removed. They have searched for every probable cause to his pain, and feel this is it. Everything else has come back "normal." His gb doesn't look right, is contracting, and has very thick walls. Not sure if he has any stones....they weren't able to see.

Caed knows NOTHING of this as of now. He gets so scared by the dreaded "S" word, so I am trying to keep him as happy as I can.....for now. I am not sure what time it is scheduled for, but will let you know. Surgery is surgery....for Mommies and Daddies having to sit out in the waiting room. I am still VERY nervous, but know God is still in control. I mainly just hate that Caed continues to have to deal with issues. (pain, meds, surgery, scopes, xrays, trips across the country to see docs, etc...) I shouldn't complain. Just long for complete normalcy for him. Tough seeing these kids go through all they do. (and Caed is one of the "healthy ones.")

Todd will be flying in tomorrow....which I am SO relieved. It's been tough being here alone with all the issues Caed is having. Once Todd has to go back to work (Mon).....my dad will come and help Caed and I the remainder of the time (and to get home).

I really dislike updating this way. Short and sweet. But....knew I needed to get this info out. It's truly a praise!!! And Lord willing Caed will be feeling MUCH better once it's out. Definitely worth it. Thank you again for your prayers!

We made it!

This post will be short and sweet. I have a very wiggly impatient little boy sitting beside me that wants "to go!"

Met with docs this morning. It was a different clinic visit than we've ever had before. Typically there is a game plan or "just keep doing what you're doing..." discussion. This time there were lots of questions and lots of possibilities thrown out. We are so grateful to finally be here and know it will only be a matter of time before we get this thing figured out. We are starting at "A" and will continue on until a probable source is found. Yes, Caed does have the hiatus hernia. Yes, it most definitely could be the #1 problem. However...some of his symptoms aren't so black and white. That's why they want to rule out anything else first. Caed is scheduled for an ultrasound in an hour primarily to see if he still has his gallbladder. (unsure whether it was taken out at initial bowel resection) We think he probably does. Also will be looking at pancreas. If it is one of those...they could be the cause for GREAT pain. So....we will start some med for hernia....give it 2-3 days. Look at ultrasound, and go from there.

Caed had only pain spell during the night last night. NONE today...thus far. If/when he does...we are to immediately go draw labs (pancreatic enzymes). Very nice part of staying here at hospital.

I will update more later. THANK YOU a million times over for all the encouraging messages and all those PRAYING for Caed. I have a tremendous story that happened yesterday (travel day). Will save that for another time. Just know your prayers are being HEARD...and answered! We love you all!

I Love You

Today was HARD.....

Caed awoke at 5am crying in pain. That pain lasted until 2pm! I unfortunately had 3 C-Sections when giving birth to my babies, but Caed's pain reminds me a lot of what a woman in labor experiences with contractions. You can almost time Caed's next spell to the very minute. The worst ones of course are more frequent and greater in intensity. Sometimes, however...he can go every 30 minutes between spells. Today seemed almost constant...

He had a birthday party to attend this afternoon and kept crying to me how much he wanted to go. I knew he did! This party had been anticipated for weeks. After one of Caed's spells....I knew we had a very short window to jump in the car and get to the party before the next one would hit. If it did.....we would go inside (it was at a family member's house, so I felt very comfortable doing so). However, the next one never came. Caed did wonderful!!!! He was completely normal again those 3 hours. SO good to see! Once we got home, he went into the kitchen and had a glass of milk. I didn't think a thing about it. Caed loves milk....like his Mama. About 20 minutes later, another spell hit. This time lasting the next 4+ hours. A grand total of about 13 hours in all today....hurting.

I honestly can't describe the feelings I have had the past 2-3 weeks, but primarily the last 5-6 days. Memories of the worst time in my life keep flashing before me. Caed is crying....I am right there beside him rubbing his back, his head, anything. I am drowning in helplessness. He is BEGGING me to fix it with tears streaming down his cheeks. Now...fast forward 3 years, life around us has changed. The setting is different. The characters have gotten older. And yet the main plot still seems very familiar. Reagan is now a pre-teen. yikes! She understands more (but not enough) and is scared. A few nights ago, Todd was working late, and Caed had the worst spell(s) to date. I was panicked here by myself with all 3 kids....and one I was certain would be making a trip to the ER. When I awoke Reagan, she knew. She could hear the cries. The screams. She immediately grabbed my neck, hugged me, and asked if Caed was going to be ok. Caleb...... (now a BIG boy) is learning. He has been my nurse's aide for several months each night priming Caed's pump. This little 3 yr. old can work it, and gets very upset if it's done without him! This week he will sometimes come in the bathroom with Caed and I (during a spell) and sit and kiss his brother's leg or arm. I have overheard Caleb talking to himself while playing, telling "someone" about his big brother that has a hurt tummy.

I don't like where we find ourselves currently. Caed was the IRP "Rock Star!" He obviously has had his issues (post NE), but NOTHING like this. Sometimes the IRP docs would ask us...."now WHY are you guys here, again?" It was a wonderful feeling. Caed had overcome SO much! I keep reminding myself of that and try to believe everything is going to work out. It may take some trial and error. It may take some time. But, we WILL get this figured out! God has proven Himself faithful over and over and over and over......He hasn't changed.

Tonight as I was putting Caleb to bed.....he asked if I would snuggle with him. Seems like a sweet request. Well, you have to really know this child to know he doesn't "snuggle." He was asking that because he didn't want me to leave. His top bunk buddy wasn't there. (sleeping in our room) Instead of snuggling....I began singing a song to him. One that I sang to all 3 of my kids when they were little. After I finished, he asked "what does 'I love you' mean?" ha Again, I knew this child had a masterminding scheme to get me to stay longer. I sat and thought. And honestly found it difficult to just spout off an answer. Finally, I said, "Caleb, it means I am SO thankful that God gave you to me." That was a suffice enough answer apparently because he said "ok" and rolled over. But, it wasn't for me. I sat staring at this child and was overcome with a thought. When I found out I was pregnant with Caleb, I honestly was devastated. I had a boy and a girl....and our family was complete. So I thought. It took several months for me to fully grasp that this was going to happen whether I was on board with it or not. 3 weeks after Caleb came into this world, my family was ripped apart, turned upside down, and the suffocating "earthquake" that followed, was almost 'too much.' However, it was in those times...the darkest moments, that little baby (clueless to our trial) brought SUCH light! God knew. His timing was absolutely 100% perfect. I couldn't see how this 3rd pregnancy at age 36 could possibly be a "good thing." It was a HARD 9 months, and I couldn't see beyond the day to day. I couldn't see the big picture.

That's what I was reminded of talking to Caleb tonight. I don't like what Caed is going through. I can't see how there possibly could be "good" brought from it. (even though I witnessed first hand how HE did 3 years ago.....oh! how quickly we forget and doubt) All I have to do is look at Caleb. That little firecracker is a reminder of how HE KNOWS WHAT HE IS DOING....We are not supposed to understand it all. We are not supposed to figure it out ourselves and "fix it." It's ok to ask questions. It's ok to cry out to Him! To BEG Him to stop the pain... He will. In His time, and in His ways.

HE makes beautiful things...out of dust.

Perspective

Quite honestly since I discovered Facebook, my blogging days are few and far between. I updated several times the past few days with everything going on with Caed, but I do know several of my friends and family members are not on fb...so I apologize.

Yesterday's "bowel prep" was excruciating....as usual. Caed was super excited to learn he could eat Popsicles for breakfast and as often as he wanted throughout the day. But, of course by 10am....he was already fed up with Jello, chicken broth, apple sauce, AND Popsicles! It was a long day for poor Caed, but we eventually got through it.

This morning we got to the hospital bright and early....went through the normal admission procedures, and Caed honestly did wonderful. In his mind, we were coming for "one picture." I didn't have the heart to tell him the truth. And felt the less he knew, the better off he would be. Everything was going as planned...until the anesthesiologist (which we had many times before and LOVED!) came in and started telling Caed in detail what was fixing to happen. Caed's eyes suddenly filled with absolute terror! Although he was scared to death, our brave boy never shed a tear the whole time at the hospital. Obviously watching your child as they "go under" is never fun, but we had complete confidence in our GI doc and the team that was with him. I was reminded today HOW MUCH I love that Dr. H always has Christian music playing while the procedure is taking place. HUGE bonus points with Mom & Dad!

Every time Caed has had a scope (upper), the GI docs always come out laughing and each begin by saying the same thing: "Why didn't you remind us about that stomach?!?" (it was twisted up in the initial volvulus and honestly reminds me of the silhouette of a Thanksgiving turkey) It is always very difficult to move the endoscope through. But, with God's hand....Dr. H was finally able to get it.

Overall, the results looked very "normal." We are however still awaiting pathology results on several biopsies taken. There was one problem area found.....a pretty good sized hiatus hernia. This most definitely could be the cause of the nightly pain Caed has been experiencing, but....unsure until we get all results back.

Caed and I will fly out for NE on Monday morning and meet with the IRP Team on Tues. Remember we had told Caed (long ago) that this trip to NE would be super easy. Just blood draws and dr. visit. Todd and I felt sick these past 2 weeks thinking that would not be the case as Caed would have to have the "full meal deal." Praise God....we got everything done here at home (which will be sent on to NE), and now Caed's UNMC visit can still remain "easy."

We feel very relieved to have this particular test out of the way, and also for a possible answer to his pain issues. However...there is still some anxiety in my heart. When will I ever learn? That combination is always disastrous. I am trying desperately to think we will just treat it with some kind of drug....prop his pillows up every night...watch what he eats in the evenings and what time he eats....and on and on. I KNOW this is probably very silly. So many of our friends are fighting MUCH worse things than a hernia. I don't want to sound petty. But, I also know how much pain my son has been in the past several weeks. It was absolutely awful to watch. He is 7. Will he have to live (deal) with it for the rest of his life? Again, I know.....so what? Lots of kids have to deal with 100x that every day of their life. I guess the part that got me was hearing that a surgical fix is out of the question for Caed....considering his bowel. Not that I am wanting to rush him into any surgery, it's just the reality of this syndrome. Don't mess with it (bowel) unless absolutely necessary.

I will stop my Mama-sulking now.....go on to bed....and be thankful. Thankful all 3 of my kiddos are asleep in their beds. Thankful for the last 2 pain-free nights. Thankful Caed will (Lord willing) be at a swimming party tomorrow afternoon jumping and splashing and laughing....and doing "flip-twists" off the board. I have been reminded unfortunately of hospital life this week. Just the few short hours we spent in various parts, brought back a flood of emotions and memories. I'm afraid I got comfortable these last couple of years. Comfortable in the day to day grind....going and doing....running in circles trying to keep up. It just takes one episode. This minor "setback" we've experienced the past month has helped put things in perspective again.

Gosh, I love my little boy! Just trying to put Caed into words....well, it's pretty much impossible. He's special. He's unique. He somehow tugs at people's hearts, and he's been kept here for a reason. I could probably name you 1000 of them. Although, I can't help but think there's more. Something bigger. Something I can't even wrap my finite brain around.

Caed, you WILL get through these current issues. And Lord willing....HE will continue pulling you through the many, many more that will probably follow you. But, you are strong and brave and remember....the ONE who holds you in His hands....is faithful and sovereign and wise and good. Whom then shall we fear? He will never let go.......

Looming questions...

Friday night Caed went the whole night (HOOKED UP...even!) without a single pain spell. First time in over a week. We were SO encouraged, and so thankful for all of you praying on his behalf. This morning, however....he awoke about 5:30 whimpering and crying out for us. We went through our normal routine, and after about 10 minutes, he was back in bed. It wasn't 30 minutes later, we heard him crying again. This pattern continued (like clock work....every 1/2 hour) until around 10:00a. Todd and I were completely stumped.....and of course distraught. He then had a couple more spells throughout the day. Overall, however, it wasn't too bad. (we've certainly had worse!) He made himself a pallet right beside our bed tonight....and we decided not to do feedings. His little gut definitely needs a break and his body needs REST! We will be in touch with Nebraska obviously tomorrow to see what they think. His sbs is scheduled for Thurs. here at Covenant. I'm assuming we will try to wait that out, considering he does ok between now and then.

SO many thoughts are running through my head. Most of which I am trying to ignore. (coming from satan) It's almost funny however, the verses I am coming across or the songs that "by chance" are coming on the radio. A couple in particular I like to call "Caed's songs." They are by David Crowder and his CD was in our car the day/week all this first happened to Caed 3 yrs ago. These songs hadn't made it to radio yet...but they were played over and over and over as I would sit in the parking garage of the hospital (hitting the repeat button).....desperately trying to pull myself together before going in to see Caed each morning. In fact, not sure I have ever heard them on the radio until just a few weeks ago. I kinda have to laugh at that....it's literally like God is sitting in the passenger seat of my car saying..."I haven't left! I'm still here! And I'm still holding your little boy in my hands. Nothing is happening to him that I am not in control of. This ("setback") may have surprised you....but not ME!"

A "Blessing in Disguise" is truly my main prayer these days. I don't know what on earth is causing this pain in Caed. And WHY now? He has been as "normal" as can be for so long. He's one of the "healthy ones"....according to the IRP Team. What is different? What did I do that may have caused this? The answer to these questions continues to be nothing. We desperately want answers, but the means by which they will come.....not so much. Our trip to UNMC this summer was supposed to be easy. Caed was doing SO well....they didn't see the need in exposing him to any more radiation (through an sbs) than absolutely necessary. We had told Caed this (several months ago), and he remembered. Recently, he asked again, "...so when we go to NE, all we have to do is blood draw and talk?" YES Caed! That's IT! Then, we can go to the zoo and do all those fun things you love so much in Omaha. ......my heart breaks for him now! Caed is almost 8 yrs. old. It's been a long time since he has had to do a lot of the "harder" tests. 3 years ago, we were 100% immersed in everything hospital life offered. Those "tough tests" came weekly....if not daily for MANY months. Now....we have experienced a very healthy span of about 2 years. This is a learning experience for us.....as well as Caed. These tests will come again....and again.....and again during his lifetime. I believe he will have those "healthy seasons" and then naturally have bouts of short gut issues. I sat thinking about his future wife tonight. (bless her dear soul...haha!) But the fact that she will have to learn SBS. She will one day (Lord willing) be the one that is with him during the x-rays, scopes, etc..... I KNOW the Lord did a miracle in Caed's little body! No one will argue that fact. But...he still has only a fraction of his small bowel left. Anatomically speaking......he will have "issues" the rest of his life.

What seems scary to me now contemplating the possible source(s) of the pain, may actually be God's way of showing us something incredible! Perhaps by uncovering some great blessing..... I don't know. I honestly have NO idea how the next few weeks are going to play out. (thank God!) Will it be an easy fix with some ABX for bacterial overgrowth? Or will, dare we say....surgery be needed? There is only ONE person who knows the answers to those questions, therefore I desperately need to stop trying. We need to take it one day (night) at a time. Count our blessings....they are as many as the stars, and ultimately TRUST in the One who holds it all together!

As the song says....."He ALWAYS comes through!!!"

Reminder....

Today was a tough day for me. I was unfortunately reminded that Caed has a chronic condition. It will never go away. Although I am very much aware of this each night while hooking him up, the "normalcy " of his life is quite powerful. Since moving here to Idalou, I have had the pleasure of making many new friends. I have also had opportunities to tell "Caed's story" to people who did not know us 3 years ago. They are blown away. It is a complete shock to them because of how Caed just blends in with all the other 7-8 yr. old boys. He is just like them in every way.....except he gets hooked up to a machine each night and has a button on top of his abdomen.

Caed has been having pain spasms sporadically the past month. However, lately they have surfaced ONLY at night....and ONLY when he is being tube fed. It is so confusing to us. Any possible causes just don't add up in our heads. After speaking to NE most of the afternoon today, it was finally decided that Caed needs the "full meal deal." (scope, barium enema, and short bowel series) Then, the dreaded "S" word was used. If his bowel is dilated, there might be a need for the STEP procedure (bowel lengthening surgery!). At that point, I honestly just lost it. I guess God knew it had been awhile since my last good cry...and I was due for another one. It has been 3 years since his last surgery, and I would really like to keep it that way.

In the morning, we will go have an xray and see our local GI doc. (the one that was with us from the very beginning) Afterwards, we will get in touch with NE, let them know what Dr. H thought, and then schedule a time for us to head on up (early) to Omaha. Our plan to combine medical and vacation again this summer is probably out the window.

Please pray for Caed. Pray for answers. And pray for Todd and I to accept whatever those might be.......