Victory dance

The line is gone, uh-huh, the line is gone!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


(you can't see me right now, but I'm totally doing a victory dance right now!!!!!!!!!!!!!)


Saturday is water day!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

No more hook-ups!

I thought I'd give you guys an image of what our nights use to be like here at the Cleckler house. (keywords: use to be)!

This is all the "stuff" I had to mix, inject, disinfect, prep, connect, and program. All while being as sterile as possible. The "stuff" in the top left corner is the tubing for and the bottle of Omegaven (or what we like to call white gold!). The bottom left is his bag of TPN and the vitamins that had to be injected into it. In the top right is the alcohol swabs used when touching ANYTHING and the flushes used to flush his line before hooking him up. And the bottom right is the pump that all this was run through, batteries for the pump, and tubing for the TPN.

This is a close-up of the TPN bag
Drum roll please.................
This is a bottle of Omegaven!
Any parents out there thinking about going to Boston for this stuff.....
here it is. Just a small bottle containing a whole lot of miracle!!
This is his pump pole. It has his Omegaven pump(notice the Nemo sticker. Fish oil...Nemo...get it? Just a little reminder from our CAIR team), TPN pump, and his enteral feeding pump all loaded up on it. And that square "thing" behind it is actually the co-sleeper that he use to sleep in right next to our bed. The big bag of white fluids is the Neocate formula that we use to run through his mic-key button at night. a.k.a. his food.

Another drum roll please!.

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And this is Chase tonight!! Sleeping in his own room, in his own crib with NO POLE!!

If you look really close, that little bean in the crib is Chase fast asleep :)


YEA!!!!

Just sharing a moment!

I don't know if this has all just suddenly caught up with me or what, but I just had a "moment." My incredibly beautiful son was just standing next to his table, eating his puffs, and then he turned and gave me the biggest, most beautiful, happiest, most cheerful smile and giggle. The flood gates opened. I am suddenly overwhelmed.......this is actually happening. This is almost "over." I say "over" because Chase will always have short gut, but the hard part is almost over. In fact, in just exactly one week, the most obvious indication that my son is "sick" will be gone. Gone.

This time a year ago we were waiting. Waiting for his bowels to heal. Waiting to find out how much functioning bowel he had left, if any. All we knew is that nothing was going through and anything that did go in, stopped at about 5 cm. in. Other than that, we had no idea what was going on inside our little man. And yet, we were full of hope. God had a plan, we just had to wait patiently for Him to reveal His plan. It wasn't easy, I'm not going to lie. I'm not even really sure how we got by day-to-day. But we did. By God's grace we did.

And now, here we are a year later (oh man, here come the tears) and our son is, at this very moment, tearing apart the play room. He eats just as a little one-year-old should. He moves, talks, plays, cries, and pitches fits just like a one-year-old should. He hears everything (thank you, Lord) just as a one-year-old should. He's curious. He thinks everything his brother does is hilarious. He's walking. He loves Bob from Veggietales. He loves sweet potatoes, apples, Graduate puffs, and hot dogs. He screams when he wants something (especially your attention). He gets jealous of his brother. He says "amen" after prayers (this is my favorite!).

How did we get here?!?!?

How did we get so fortunate? What's going to happen now? Will Chase like baths and swimming? What will be his favorite things?

And we have his lifetime to find out. I am at a loss for words. From just having days to spend with our son, we now have a lifetime. There will be a million more smiles and giggles just like todays.

I can't believe this is happening. It was such an excruciating year full of tears, sadness, fear, scares, gut-wrenching pain. But more than these there was hope, love, grace, faith, family and friends who pulled us from the darkness. There was healing. There was healing. Thank you Jesus, there was healing.


I am overwhelmed.

I think MercyMe said it right:
"Bring me joy, bring me peace. Bring the chance to be free. Bring me anything that brings You glory. And I know there'll be days when this life brings me pain. But if that's what is takes to praise You....Jesus bring the rain!"

The rain came, and the storm clouds are starting to open up. I pray, let His light shine on us and through us now. Thank you Father.

Surgery is scheduled!

Aug. 19th is the big day!!! No more line and lots and lots of fun in the water!!! We can't wait!! It'll be an outpatient surgery up at All Children's St. Pete with our wonderful surgeon, Dr. Danielson. We were so glad to see him yesterday and they were really impressed with how well Chase was doing and how good he looks!!

We're going to go up on Tuesday, the 18th and stay at the Ronald McDonald House until Thursday, the 20th (wanna stay close to the hospital for the night after the surgery). That is if rooms are available. We're even a little excited to go back to our "home away from home" and see all the volunteers there. They're really going to be excited to see Colton. He was a ray of sunshine for everyone there when we "lived" there. They just loved him.

Oct. 6th is the date set to take out the mic-key button, but if he does well, it may be sooner!

I'm am jittery with excitement!!! I can't wait for this next step in Chase's journey. It's gonna be a good one! PTL!!!!!!!!!!

Pics from our last (and hopefully final) trip to Boston

Colton being a perfect angel in his own seat on the plane. I was so proud!

Members of the CAIR team!

And this is the infamous Dr. Mark Puder. He was on vacation when we went to clinic so we didn't get to see him. So I took this picture of a picture of him. He'd probably kill me for posting this, but you gotta see the man who brought about Omegaven! He's a great man. Humble, yet great. Thanks again Dr. Puder

Leaving Children's Boston for the last time.

"We're outta here!"

This is what we had to celebrate the good news.......Boston Cream Pie.

Mmmmmmm, I can still taste it.

Totally not on my diet....but gooooood!

Finally got to go on a Duck Tour!

We love strolling through the Boston Commons

Finally made it to a Sox game at Fenway!! And we had some pretty great seats!

Colton, Randall, and Unka Todd

Another "Yipee!!"

Hey everyone. It's official. The line is coming out. The words were spoken yesterday afternoon. Immediately after I got off of that phone call, I called our surgeon, Dr. Danielson, in St. Pete. We have a consult Aug. 10th and the date of the actual "removal" will be determined then. I'm hoping I can rush Dr. Danielson. But I'm pretty sure he'll be stoked just seeing Chase! He's the man who got to see the "final results" of what Chase's bowels look like. He's the doc who removed all the bad stuff, reconnected the good stuff, and opened the door (literally) for Chase's first poopie! Yea Dr. Danielson!!!! We can't wait to see him!!!!

So here's how it went down. On Monday we went to the peds. to weigh Chase and to have Colton's 2 yr. check-up. Colton is doing great by the way. Just growing up too fast!!!! He did have to get a shot, poor thing. But as soon as I said the word "cookie" he was good. Like the shot never happened. (Tip for moms: bring a cookie on shot days!) His height has finally caught up with his weight. He's always been a little chunkmeister, but he's growing into it now. :(...I'm gonna miss the pudge, but I guess they have to grow up sometime.

And Chase weighed in at a whopping 20lbs. 10oz.. That's a 10 oz. gain in just a week and a half.....with no supplementation. He did this all on his own!!!! (Well, him and our very wonderful Father who has blessed Chase and this family time and time again.)He has become quite the little muncher. He eats and drinks ALL DAY LONG!!!!! But that's what we want!!! (Even though those late night feeds are rough on daddy and I, we'll take it over the alternative!)

So I called Boston to give them the news. They had to "talk about it" and they would get back to me. But they also gave us his lab results from our visit up north. All his labs were good! Along with the usual labs, they tested his vitamins. His Vitamin A, K, and B12 were great. But his vitamin D and E were borderline low. I had to explain to them that we don't see sunshine right now because the mosquitos out here are the size of dogs so we stay inside. Hence our pastey complexion in the summertime :)~ Seriously. I'm not joking. So that is why the Vitamin D is low. But just to be safe, Chase will be taking a vitamin daily called ADEK. But what kid doesn't need some type of vitamin, right?? His iron was also borderline low so he's going to take an iron supplement as well.

So if this is all we have to worry about daily, I think we're doing purdy good!!! Of course we'll always be watching him for dehydration and my job as a professional poop-inspector will be a lifelong duty. (Please forgive the "duty." Didn't realize it 'til I wrote it. But it is kinda funny!)

But we also got another unexpected "yahoo!" moment during this phone call. Danielle, our Boston nurse (whom we love, love, love) told us about the citrine amino acid. (Forgive me if I don't explain this very well.) They've recently found a link between the citrine # and the length or amount of bowels. The more bowels, the higher the citrine count. So naturally, kids with SBS will have a low citrine #. And the more bowels you have the higher the count. Danielle said that Chase has an unusually high # for a child with SBS!!!!! What does this mean you ask???? It means Chase's bowels have grown well along with his growth and the bowels he does have left, are doing a really good job of compensating for the bowels he does not have. She told us his number was really low back in October when we first got to Boston to start the Omegaven and now his # is in the double digits!!!!!!!

I immediately thanked our Lord and Savior for this report because I know it's ALL HIM. I told my husband that if they went in to look at his bowels (which they won't because we won't put Chase through that again) but IF they did, I bet they would be pretty surprised at what they found. I bet God has lengthened and fattened up those bowels to function just as He intended bowels to function. The docs would probably have another "huh?" moment. (We are starting to pile up on these moments!!) He is functioning with supernatural bowels you know!!!!!!!!!!

So (sorry, getting all worked up!) after two days they called back to tell us it's okay to take out the line. HALLELUJAH!!!!!!! For a child who was first off, not suppose to live at all, to a kid who would be on TPN for years, and now a 1 yr. old little boy about to take his line out........God has brought us a long way and in a short amount of time. Only possible through Him, but all things are possible through God!!!!!

They also said we'll be taking out his mic-key button in the early fall. And Chase is doing really well with transitioning from his Neocate formula to Soy milk. So, needless to say, Chase is "Kickin' Short Gut's Butt!!!!"



YAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!

The only title appropraite: GOD IS GOOD!!!!!

First off: Y'all should get on to me when I don't update this blog. Shame on me. Too much good stuff to share and me being lazy. Well, there's no excuse now and you'll see why soon!! :)

1. Shortly after Chase's first birthday party, Boston called. Chase was still going up on his weight so on July 9th he was OFFICIALLY taken off of TPN and Omegaven. Instead he is receiving fluids, D-10 (sugar water) 4 nights a week to make sure he doesn't get dehydrated. In the meantime, we had to watch and make sure he didn't lose any weight due to the change.

2. So after the fluids were started we checked his weight every week. First week: he gained 5 ounces!!!!!!!

3. Skipped the next week because we were headed for Boston for his usual clinic visits. Now I was hoping and praying for some good news. And just to give me a sign, Chase got a Frog toy in his Happy Meal on the way to the airport. Okay God, I gotcha!!!!! It's going to be great!!!!!!! (For those of you who have followed Chase from the beginning know that we call him Frog and that we lean heavily on the phrase Fully Rely On God.....FROG!!

and yes, Chase is eating Happy Meals!!!!!!!!!!

4. Got to Boston. Unfortunately Dr. Puder was on vacation (but the man truly needed it). Got to talk to Danielle, told her Chase's progress:
1. Chase is still gaining weight. A whopping 20 lbs. to be exact!!
2. His stools are about 3-4 diapers a day and looking pretty good
(see, praying for poop works!)
3. No longer using the mic-key button for night feeds. Strictly bottles and up to 42
ounces of formula a day.
4. Eating ALL types of food. And he prefers to feed himself.

So Danielle conveyed this news to the CAIR team (you guys ROCK), came up with a plan,


AAAAAANNNNDDDDDDD......................................................................................













Fluids have been discontinued. And if all goes well in the next 2-3 weeks (meaning good hydration and no weight loss) we can.....................




wait for it..........................................













TAKE OUT THE CENTRAL LINE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

YIPPEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!!!!

Biggest step in short gut syndrome if you ask me and this is why:

Without the line there are no worries of infection. No worries of fever and having to rush to the hospital and unheard of amounts of antibiotics and all the horrible side effects.
Also, Chase is no longer dependent on something else for nutrition. This means his beautiful yet "different" bowels are doing all the work and doing it quite perfectly if you ask me. But that's because my son's small intestines were touched and healed by The Mighty God who gave them an extra "kick"!!!!!!!! Can I get an "AMEN"!!!!!!

WAHOO!!!!!




Oh but I'm not done. Just when you think God has done enough, he kicks it up a notch!!!!



Not only do we get to take out the central line, we also get to remove the mic-key button (or G-tube). Yep. No need for any pumps feeding Chase, he'll do it all by himself. Better yet, the only trace left on his abdomen that something had gone "wrong" (I use quotations because our idea of "wrong" is just a way for God to show His awesomeness) will be the scar across his belly. And what boy won't enjoy showing off a "cool" scar like that when they get older!!!












My cup runneth over. My God is truly, truly, TRULY amazing. And if you don't know Him, you might want to. Look what He has done for our little boy. He can do the same for you.

So I no longer have to mix up bags of TPN, untangle and connect tubing, program pumps, hang bags, prep, clean, and clear a central line, and hook up my son to IV lines or G-tube feedings at night anymore. Not really sure what I'm going to do at night anymore. I'm really use to my routine, but ecstatic that our son no longer needs these interventions. He's just a "regular" boy with a cool scar and quite a story.