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.......

Ahoy!

The Pirates are in full-swing, and Caed is loving every minute of it! This is his first season here in Idalou, and also his first season to participate in machine pitch. He is doing wonderful! On Saturday, this little guy hit not 1 home run.....but TWO!!!! (in a single game)

SBS speaking....he is doing equally great! We're continuing at 500mls of feeds over 6 nights/wk. (he loves "Free Fridays!") His next NE apt. will be in July.


playing short stop






hit a Triple!


hoping to make it Home








little brother awaiting next summer for his big debut......t-ball!!!!!!

3 years...

and counting....

Today marks the 3rd anniversary of Caed's short gut and the trauma-filled year that followed. Thus far, I feel exactly as I did the previous 2. There is such a heaviness in my heart. Although Caed is alive today and thriving (praise GOD!)....the memories from that dark time always seem to surface more now than any other time of the year. March 1st. To be honest.....I hate this day on the calendar. It conjures up such deep pain, and flashes of those first 24...48....72 hours haunt me all day long. As hard as I try to stop them....I cannot.

I know so many of you have your own "dreaded anniversaries" that take their place on the calendar every year. A day that signifies a great loss in your life. You understand. I am only 3 years out from mine, so I cannot truthfully say that it gets better. Maybe it does. Maybe not. "Time heals all wounds." Isn't that the famous saying? I know with the passing of each year the stinging pain does lessen; however, the scar will always be there. I was recently told (in so many words)....to get over it. To "face my fears and move on." I know it was said in love. NOT to hurt me. But, it did. I assure you I have and continue to "face my fears" everyday for the past 3 years. I face it head on every night while hooking my little boy up to a machine. I face it everyday when I have to look at that awful "button" that protrudes out of his abdomen. I face it when I let him be a normal little boy and wrestle with his friends even though I am screaming inside with fear that his G-tube will be ripped out of his stomach. I face my fears every month while watching my son give blood and having to endure test after test in a hospital that we once called "home." I face them as I lug box after heavy box of medical supplies that are delivered to my front porch each month. I face them daily knowing the realization that we came so close....so very close to losing our 4 year old little boy. The events of the past 3 years are now apart of me. You cannot separate the two. There is no "getting over it." And for that, I am thankful. God, in His incredible love and providence has allowed those events (as awful as they were) to shape me. To mold me and teach me things that I would NEVER in a million years have learned otherwise. I can bawl at the drop of a hat when I hear a song that references God as "Healer." It's not just a neat church-y word that I have heard all my life. It is REAL to me now! And it will silence me to the core upon hearing it. I will continue to face my fears. And I will continue to move on....to press forward. However, I cannot move forward without remembering the events of the past. They go hand in hand. Oh, God! May I NEVER EVER forget!!!!

Yes, it's been 3 years. Three incredible years! We celebrated Caleb's 3rd birthday just a few weeks ago. I can't believe how big he has gotten. Where did my baby go? Caed is also doing well. He is happy and "short gut healthy." Reagan has made lots of new friends, got involved with cheer, and of course busy in school. We are all adjusting to our recent move and job transition. I have loved getting back into the classroom and am finally feeling more settled. We are continuing to search for a church home, but know God is in control and will lead us to just the "right one" in His perfect timing. We are very excited and eager for that day to come.

We want to thank SO many of you who have continued to follow Caed's story. It's not over, but oh, we PRAISE GOD for His work in Caed's life. Thank you for also continuing to put up with me. Thank you for simply "listening" to me vent and pour out my heart these past 3 years. I know without a doubt I have not dealt with all of this perfectly. I have made so many mistakes. But, I am learning. Thank you for being patient with me through it all.

We love each of you......and I promise I will try to update the blog better!! I have desperately missed writing. Although I am not promising anything too profound, I will do my best to post pictures (which I LOVE) and more family updates. ;)

Seems like only yesterday....

....I was up in front of a classroom, making lesson plans, grading papers, and out on the playground. My first week back was very good! I am teaching 2nd grade and absolutely love it. My kids are so sweet and smart and a joy to see everyday. Several of my students are the children of some of my best friends growing up. It's funny to look at them.....makes me feel like I'm in elementary again myself. (not to mention being in the very same building!)

Caed and Reagan probably think it's the coolest. They LOVE coming to my classroom each morning and then again when the bell rings. I see Caed quite a bit throughout the day....which is so fun! Sometimes I get to sneak a quick hug or kiss (while none of his friends are looking, of course.) Reagan LOVES coming to my room after school so she herself can play school. She made report cards and folders for every student in her class.....grabs one of my teacher books and away she goes. Who knows? She may just follow in her mama's footsteps someday.

I am absolutely exhausted and still have so much I need/want to do up at school. Every day this past week I was up there til 5:30-6:00. I am really ready to get to the point where I finally feel "settled." Maybe by May???? ;)

So many of you I know prayed for me this week. THANK YOU very much!!!! I truly had a great first day back and rest of the week. There was a calming I couldn't explain.....

1-1-11

It's been awhile since I've blogged, and for those of you who follow this one, I apologize. I, too have about 5 blogs (our short gut or bowel transplant friends) that I am completely addicted to reading daily. When they go even a day or two without posting, I get worried and restless. Although I have to remind myself from first hand experience, no news is generally good news.

I assure you I have had plenty of things to write about, just very little time and energy to do so. It's been good for me to take a little "break" from blogging. But oh, how I miss writing! It truly is my escape...

Our time during the Christmas holidays was wonderful. We continued getting more settled into our house and particularly have enjoyed lots of good family time. My sister in law (Megan) and her little girl (Xan) have been here in the states for almost 2 months. We have LOVED it! My brother, Stan, just flew in from China a few days before Christmas. I know he was sure ready to see his girls.

I knew the 2 weeks of Christmas vacation were going to be fun (for the kids), but also a little stressful for me. I begin my new job as a 2nd grade teacher on Monday! I am taking over for a teacher that has moved. A total 100% God-thing!!! Teachers very rarely resign in the middle of the school year. The timing of our move back to Lubbock, Todd's major job change, and then this...was actually very cool to witness. One of those times when you pray about something, and then step by step....you see God slowly laying out all the pieces of the (seemingly impossible) puzzle right before your eyes. But.....even though I know HE is in this, the butterflies in my stomach are still going strong.

The kids are doing great. Caed continues to amaze us. (and scare us at times too.....which will probably be the case forever, I'm afraid) Any little thing with him (physically) always causes Todd and I to go into OVER-analytical mode. But all in all.....he is doing SO well, we have pushed his Dec. clinic visit to March. And possibly, might even try the summer! His weight gain is probably not what it should be, but at least he is maintaining. He continues to be tube fed for about 4.5 hours each night. We thank God for a wonderful, "healthy" 2010!!

I ran across a quote today by John Piper. God promises new troubles (Matt. 6:34), new mercies (Lam. 3:23), and new hope (2 Cor. 4:16) for every day this year.

Upon reading it initially, I didn't like it. Not one bit! What on earth do you mean He promises new TROUBLES? That's not very encouraging to read on this first day of the new year. But, then to read on......there will also be new MERCIES.....and new HOPE too! Not just some time during the year, but EVERY DAY! We live in a sinful, fallen world. Yes, there will be troubles. There will be hard times. There will be tears. There will be those moments we don't think we can carry on. BUT, it doesn't end there. What feelings of complete sorrow and hopelessness if it did.

Thank you God for Your mercies. They are truly new EVERY morning. And thank you that our inner person is being renewed DAY by DAY. Help us to be ready! Ready for those daily "troubles." Help us to be aware when it rears its ugly head so we don't miss the opportunity to turn it around for good. Knowing nothing that You allow into our lives is meant to harm or destroy us. But rather, build us up, make us stronger and ultimately more like Your Son. Lord, we pray for 2011. Both good days and bad will inevitably make up this new year. Thank you in advance for the good. You continue to shower us with blessings which we do not deserve. Help us during the bad. Hold us close, and remind us of Your constant faithfulness.