Calling all short gut parents and families!

The Omegaven Benefit is official. February 21, 2010 here in southwest Florida. I am sending out a request to other short gut families for as much "stuff" as possible that could be used at the benefit: stories, pics (especially before and after pics), or even items that can be auctioned off during the raffle/silent auction/live auction. Reaching high for this one! $25,000 to be exact. Please send this to other SBS families you know. The more personal involvement the better!!!!! Thanks to all!

For more info. you can contact me at my e-mail: sherbearsis7@earthlink.net

Heather Cleckler

Extra, Extra!! Read All About It!

So I've finally gotten the courage to spread the news that I will be running in the Disney Princess Half Marathon on March 7th to raise funds and awareness for Omegaven. So for the next 5 months I will be relentlessly training for the race and, more importantly, raising money for Omegaven Research so more babies can get the treatment they need for short gut syndrome and so families can rest in knowing that their child is on their way to recovery!

My goal is $25,000! But passing this goal would be a true blessing. You see, families receiving Omegaven do not pay for the treatment. Because it is a research project the lipid is provided to the family at no cost. The only difficulty is getting the families to a hospital that uses Omegaven, which is a small handful throughout the United States. (Will provide that list soon!) So funds donated specifically to the Omegaven research may enable the research team to treat more patients and encourage more hospitals to use Omegaven at their facilities. If more hospitals use Omegaven, more children and their families will have access to the lipid, and more lives will be saved. I am sure of this!

So to jumpstart this fundraising I will be sending out newsletters monthly to provide facts and tidbits about Omegaven, where we are in our fundraising, and names of those who have donated. If you would like to receive this newsletter please just e-mail me with your mailing address or e-mail address at sherbearsis7@earthlink.net. Please type "newsletter" in the subject line so I don't delete the e-mail as junk mail!

I do plan on having different fundraising events and activities in the near future as well!! If you would like to help in anyway please e-mail me at the address above with "fundraising help" in the subject line.

It is about time the world hear about this lipid that can save the lives of kids struggling with short gut syndrome. It saved my son's life. It has saved over 100 kids who have received the treatment at Children's Hospital Boston. There is no reason this number shouldn't be in the thousands. Let's put pressure on other hospitals to provide this treatment. The last thing a family needs to worry about for their child with short gut syndrome is if their liver will survive. Omegaven can do that!!!!! No more excuses!!!!

It's out!

So the mic-key button came out with no problem yesterday. And we even haven't had any leaks!!!

What was really cute was when Chase said "I did it!" while we were walking out of the doc's office yesterday. We're so proud of our little fighter and apparently so is he!!!

Good Bye Mic-Key Button!

Mic-key button comes out tomorrow!!! Once again, doing my happy dance.

Not looking forward to all the messy that comes with it, but hey, I'll take it!!! My son will officially be "medical parts" free!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

(The button is that little plastic thing on his tummy. It's a feeding tube, but we haven't used it in over 2 months!)

Good News!

The Mic-Key button comes out this week!!!!!!!!!!!!

Also, I totally should have asked for prayer for the poopies sooner because, literally, the day after I posted the request his poopies went down to 4-5 poopie diapers a day and better yet, PASTY POOPS!!!!! What was I thinking?!?!?!?!?! Once again, we give all thanks and glory to the MAN above......HE ROCKS!!!!!!!!!!!!!!!!!!!

Picture update...........FINALLY!!!!

Okay. So I really don't have an excuse for being such a slacker. It's just been really busy around here. Chase is now up and running so you can imagine I'm just kind of chasing him around all day :) Lots has happened in the past month. All of us, except Randall, were sick (first time I've been sick since Chase was born, thank you Lord!), Randall has gone back to work, we've been working on our new house, LOTS of diapers to change, we got to share our testimony with a fellow church who were big time prayer warriors for us, a trip to Disney for my birthday (thank you Randall!), and GATOR FOOTBALL HAS BEGUN!!!!! Go Gators!!! More importantly, Chase is doing great. We weighed him last night and he is a whopping 22 pounds!!!! He has had really wet and frequent poopies since the line was removed but it doesn't seem to affect his growth or hydration. We'd still like some prayer for it, just to be sure. We are praying for less frequent poopies and poopies that aren't so wet. We miss our pasty poops!!!

We'd also like to ask for some serious prayer for some of our friends we have met during this journey. Preston was recently diagnosed with a form of cerebral palsy. Of course the docs have given a list of things Preston may not be able to do, but we know better. With God, all things are possible!! Hang in there Chris and Julie. Eli, a little boy with heart problems, is going through a rough patch right now. And Ellie, the one who led us to Omegaven in Boston, has been going through a really rough patch and is NPO (no food by mouth). A drastic step back for this family. But you wouldn't know it with this family's courage, hope, and strength. Not to mention Ellie's intelligence, strength, and just plain "cuteness." She is a force to be reckoned with!!!! You can visit her site at www.eleanorbrogan.blogspot.com

So here are some pics. Pics from before and after the line was removed. And of course, Chase's first real "dunk" in water. Again, I am sorry. Enjoy the slideshow......there are a lot of pictures!!!
(this is for you Uncle Joe and Aunt Dawn!):

Chase's bathtime before the line was removed. Daddy is holding up the central line so it doesn't get wet. This is the line that the IV fluids (TPN) went through and were dumped into his bloodstream right at his heart. Scary.
Chase's medical storage shelves. I had a blast getting rid of all of this "stuff."

Chase at Ronald McDonald House just hours before the surgery. (check out that hair!)

A groggy Chase after the surgery

Check out the frog wallpaper in our room after Chase's surgery! "Coincidence is just God's presence not being acknowledged!"

SWIM DAY!!!!!!!!!!!!!!

Colton had a blast, too! Before, Colton would play in the pool alone and Chase would watch from his stroller. Not anymore!!!!!

SPLASH!!

Mmmmm, popsicles!

Pappaw actually got in that tiny pool with the boys but I figured I wouldn't embarass him by putting the pics up! He did promise Chase he'd be right there with him when he took his first swim. He kept his promise!! Thanks Pappaw!

Chase's first REAL bath! With bubbles and all!

Colton doesn't look anything like his cousin, Jayce, does he??? :)

Riding the tractor with Pappaw

Colton fishing. He can cast and everything!! His daddy is SOOOO proud!

Colton definitely has the "mean" face down!

A day in the cowpens. Who do you think is Colton's favorite person?!

This is Chase's first time in the cowpens. Hey, who's that hot guy in the middle?

Chase taking care of the calf. He wasn't scared a bit.

Chase's first ride!

Chase before his first haircut. (Don't worry. The curls just got curlier!)

Old-timers day at church. There's that hot guy again!!!

Chase loved Disney. Colton on the other hand........

Perfection!

Today was one of those days that you can never forget. Today my son was fully immersed in water and we didn't have to freak out. Today was so beautiful, it was as if God purposefully made the weather perfect for us to be outside all day today and not break a sweat. We live in the Everglades. So to be outside for even a little bit in the month of August is torture: 100+ degrees, humidity, and mosquitos buzzing and biting every other second. But not today. Today there was a nice breeze, cool temp, and no bugs!!!!! Our own little paradise God created for us in the middle of the swamp.

But forget the weather. Chase was SWIMMING!!! And, oh my word, did he love it!!! It was surreal to see him sitting in water, splashing water on his chest where his line use to be. It was heavenly to see him playing with his brother, splashing each other back and forth and Chase mimicking Colton's every move as if learning new territory and Colton the expert. He was adorable in his swim trunks and no shirt. And his curls went into super-twist mode when his hair was wet! His hands and feet were pruned. He played in the pool for 3 hrs! And an even better treat.........Pappaw came over to join them! That's right, Pappaw got in that little plastic pool with the boys and they thought that was the best thing since goldfish crackers!!! And later Meemaw came over with BUBBLES!!! Now what little kid do you know doesn't love bubbles! Good call, Meemaw!!

So after 3 hrs. of pure bliss, Colton came in to take a nap and Chase came in to eat. Not long after our break Chase got his first REAL bath!! That's right! Two treats in one day!!! How much more can we handle! He didn't enjoy the bath as much as the pool, but he was a good trooper!!

So here I am, afraid to go to sleep, in fear that I might forget one second of today. After so many days that we wish we could forget, today is a blessing. But today is just the beginning......next stop......THE BEACH!!!

And yet, after a day like today, I still have a place in my heart that mourns. I've been reading other SBS parents' blogs and some are going through a rough spot. I almost feel guilty that Chase is doing so well when others are not. Weird?? I want everyone fixed, and that's what I pray for. But a wise man once told me while I was in my darkest time (Gary Briscoe, I'm talking about you!) "It's all in God's time, not our own." One of the best pieces of advice I've ever received. So small a statement, but with such a profound truth.

So I ask everyone to pray for, not just our fellow SBS families, but any family who's child is sick. It's rough. It's hard to breathe sometimes. I pray that God will scoop them up and give them the peace that He gave to us over and over again.


PS~Don't worry! Pictures will be posted soon!!

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