Kickin' Short Gut's Butt!

Moving

2010-03-16T11:43:00.000-07:00

I have decided to create a new blog. This blog, of course, will still be available to any and all who need it. However, this is a personal step forward that I need to take. My own way of "moving forward." Our life is continuing, whether we are ready or not. And though the wound of Chase's "condition" is still fresh, it's time to put on the neosporin and band-aid and keep going. I've held so tightly to this, I feel I may have missed other pieces of my life that I don't need to miss. So yes, Chase will always have short-gut syndrome, but we've already claimed victory over this through Christ. Now we will move forward as a family, all five of us, and celebrate every single day.
Hence the creation of the Cleckler Baby Farm blog at www.clecklerbabyfarm.blogspot.com. A way for us (me) to share what's happening with us, but this time, it'll be about ALL of us. Chase is a little brother and about to become a big brother. I feel like I need to embrace this, and let the past go. We still stand in the glory of his miracle, and definitely want to share it with the world, but maybe do so as a part of our every day life. After all, God saved our son so that we can spend EVERY DAY of his life with him.

I will never forget, nor will I ever stop sharing his story. But it's a new day, and we are starting it together as a family.....strong in God....and enjoying all of life's many, many blessings and miracles.

I hope all who have joined us in this battle will still continue with us even though our life may be just "normal" now. After all, "normal" is what we prayed for!! I don't know how to explain this feeling. It's kind of bittersweet. I feel like I'm finishing a chapter in a book that I'm not ready to finish, and moving on to the next, maybe not quite sure of everything that happened in the last chapter. Thankfully, this new blog will let me share it with you.

Believe it or not, blogging is quite therapeutic. I am terrible at speaking to someone in person or even over the phone. I get all kinds of nervous. But writing (or typing) is completely different. I seem to be able to piece the thoughts and my words together a lot easier. And if someone else reads and gives their words of encouragement or advice, or just say "howdy" .....even better.

So without further ado: Farewell chapter"Kickin' Short Gut's Butt" ....hello chapter "Cleckler Baby Farm." Looking forward to what God has in store for us next!!!!

One Word: Victory!

2010-01-29T10:02:00.000-08:00

A friend took these pictures for us for our upcoming benefit. Kelle Hampton, you are magical!! I told her that I wanted pictures of Chase's scars but I wanted it to be more of a celebration of his victory rather than a photo to show all the pain and fighting he's been through. I think she did so beautifully!!!

Calling all short gut parents and families!

2009-11-02T15:40:00.000-08:00

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!

2009-10-05T08:57:00.000-07:00

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!

2009-10-01T05:40:00.001-07:00

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!

2009-09-29T14:04:00.000-07:00

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!

2009-09-28T11:34:00.000-07:00

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!!!!

2009-09-24T06:49:00.001-07:00

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!

2009-08-22T18:21:00.000-07:00

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

2009-08-20T10:25:00.000-07:00

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!

2009-08-12T18:28:00.000-07:00

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!.

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!

2009-08-12T10:12:00.000-07:00

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!

2009-08-11T10:41:00.000-07:00

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

2009-08-06T15:26:00.000-07:00

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!!"

2009-08-06T07:44:00.000-07:00

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!!!!!

2009-07-28T12:37:00.000-07:00

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.

One whole year of Chase!!!!!!!!!!!!!!

2009-07-06T19:32:00.000-07:00

What can one say after a year like this except, "Thank you, Jesus!"

We had Chase's birthday party yesterday with all of our close friends and family, which you might as well call all of them family because they've stuck by us like family this past year. So friends? Welcome to the family!!!!

I'm still completely overwhelmed and a mess of emotions. It's really hard to believe that this day last year, July 6th, was the day that the docs told us that our son had no chance of survival. The same day that we had to sign a DNR. The same day we had to come to grips with the fact that our son was going home to be with Our Father. And yet, here we are today.

And just one year and three days ago, one of the most beautiful little boys ever was born via emergency C-section with no idea that there was something wrong. The only thoughts when he was born were "look at that curly hair," and "how beautiful," and "oh I already love you so very much. How is it possible to love someone completely that you just met?" (same thing I thought when Colton was born.) "When can I hold him?" and "who does he look like?" And ironically, the docs had the radio on and the moment Chase was born "From This Moment" by Shania Twain and Bryan White was playing, singing exactly what I was feeling: I will love you from this moment on. But soon the question turned into "what's wrong?" and that's when it all began.

And yet by God's Love and Grace, Chase is a healthy, thriving little boy eating hands full of birthday cake today. A little boy who laughs at EVERYTHING, who clings to mommy all day long, who's smile is angelic and mischeivous at the same time, who dances to the "Hot Dog" song, who wants to keep up with his brother so bad, who wants to be outside ALL day long, who flirts with ALL the ladies, who sings to the Choo-Choo Soul song (I'm totally not kidding), who's story brings people to the Lord every day, who melts mommy's heart every time he puts his hand on my face, who looks so much like his daddy he might as well call him mini-me, who calls his grandparents by name, who once was diagnosed with death and is now completely and totally ALIVE, who was diagnosed as deaf and can now hear EVERYTHING, and who's future holds so many wonderful things only the Lord knows what's to come.

But you know what?

They WILL come.

A far cry from a year ago.

What can one say but "Thank you, Jesus."

Coming soon to a blog near you!!!

2009-06-29T22:19:00.001-07:00

Just wanted to let y'all know that there are a lot of things I would like to share, especially for you other SBS parents and families. I hope to get these things posted soon. In the meantime, here's a list of things I'll be sharing. Check back soon if you have any interest in the topics mentioned. Hopefully, it will help you in some way.

1. Best diaper cream "concoction" for SBS diaper rash
2. How we keep Chase's line from infection
3. A day in the life of short gut
4. SBS-friendly clothing
5. What to pack for a hospital stay
6. Our thoughts on feedings and how to avoid oral aversions
7. Other hospitals that will use Omegaven
8. Future fundraisers for Omegaven study (Aunt Missy, we LOVE you!!!)

Longing for home but thankful for all the blessings!

2009-06-29T21:42:00.000-07:00

First off, Chase just has a viral bug that gave him a fever and vomitting. No line infection!!!!!!!!!! To those of you who know about central lines, this is a huge relief. We get to go home tomorrow!!!

BIRTHDAY PARTY STILL ON!!!! YEA!!!!!!!!!!!!!!

Secondly, I want to share with y'all the mental and emotional turmoil I went through on our way to the hospital. Pretty bizarre. Of course, my first reaction was frustration and anger; "I can't believe we are going back to the hospital AGAIN." And of course questions came up like: "what am I doing wrong for him to keep getting infections. Especially since he is getting ethanol locks (more on those later)." "Why is this happening now?" "He's going to spend his first birthday in the hospital." "I can't believe I'm being pulled away from my other son, AGAIN!" You know, thoughts like that. I was royally ticked (for those of you who know me, know it's not a pretty sight)!
So this lasted for about 30 minutes. So I started praying first for strength to get us (me) through this. It didn't take long for me to get the message. And this is where it might seem a little strange for some of you. I started to remember that each time we go to the hospital (which fortunately has been very little but I tend to forget that blessing when I'm headed to the hospital) something wonderful comes out of it. Hear me out:

The first time was here in Ft. Myers in April. It was just a week stay. Not too bad. But out of it came that amazing event that I shared with you all about Chase's first surgeon and how he stated that Chase's story had "renewed his Faith." Maybe not a big deal to some of you, but planting a seed for the Lord in one person...................BIG DEAL TO ME!!!!! Not only that, but we got the word out about Omegaven in this hospital.

The second time we got stuck in Boston just a few weeks ago, actually. The blessings from this?: 1. We got to meet the Brogans (the family who's blog introduced us to Omegaven. www.eleanorbrogan.blogspot.com). (Thank you Brogans!!!) 2. Got to meet another family who were just in the first stages of the whole short-gut experience and gave them some words of encouragement 3. Got to see Chase without a central line...............B-E-A-Utiful!!!!!!!!!!!!!!!!!!!!!!!! 4. Got to see our Boston team (always a blessing. We love you guys!) 5. and last but not least, we found out that Chase will, undoubtedly, be off of TPN and Omegaven all together and his central line will be removed VERY SOON!!!!

So instead of being angry, I knew that God had something good that was going to come out of this hospital stay. I became hopeful, anticipatory, and daresay....excited. I often get excited when I know God's got something in store for us. A wise woman (Carmen Corbitt, I'm talking about you) once said, "God must have something wonderful in store for us because the devil sure is trying to stop it from happening." So, so, SO true. When something good is about to happen, the devil tries to throw things in the way to prevent it, or keep us from realizing it. But I wasn't about to let him have that.

So we got here and it didn't take long for the little blessings to start "pouring down." Here they are:
1. Had numerous nurses come to our ER room to "see the miracle baby."
2. Had one doctor call him nothing short of a miracle, jump to one knee, raise both hands up high, fingers stretched, and called him a "SUPERSTAR!!!!!" Mary Katherine Gallagher fans can appreciate this one. Nanny Beef, you were the first person I thought of. I immediately picked up the phone to tell you about our "superstar doctor." (PS~luv you!)
3.And last but not least!!!!
Dr. Mon, Chase's first surgeon, stopped in for a visit. It was nice to give him a big hug. But that's not the end of it. Dr. Mon told me that they were actually transporting a TPN/lipid dependent patient to Boston for the Omegaven, TODAY!!!!! He had told the family about Chase and they collectively decided to get to Boston ASAP!!!!!!!!!

WAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!! So our efforts to spread the news about Omegaven HAS reached someone. Can't really express (or type) how exciting that is for us!!!! We know God is using this Omegaven, just a simple fish oil currently made from anchovies, for good things and we want everyone to know about it.

So yeah, it's tiring to be at the hospital. Sleepless nights, bad food, and noisy nurses. But look what else has come out of this.

God always has something good for us...........even in the darkest moments. Don't forget to look for them! :)~

oh no!!!!!!!

2009-06-27T12:00:00.000-07:00

I can't believe this, but we are back in the hospital. Not sure what it is yet. We're hoping it's not an infection. We'd rather he'd have a bug. We really don't want him to spend his birthday in the hospital. Please, please pray for our little guy.

Colton's 2nd Birthday

2009-06-18T12:38:00.001-07:00

I have made it a tradition to take a picture of our babies the night before their birthday. So this is Colton sleeping with Daddy his last night as a one-year old :(

Colton's new birthday wheels!!!

Too cute not to post!

Luvin' on his cousin, Skylar. Just call him McLovin'!

He just scraped the icing off the cake to eat!

A Veggietales Birthday

And this is what our little boy looks like after he turns 2!

My little boy is growing up!!!

Just some pics for your enjoyment!! :)

2009-06-18T11:51:00.000-07:00

Glad to be home!

Cruisin' the halls of Children's Boston 10 East!

Chase's EKG

Chase had his last dose of antibiotics on Tuesday and his stools are already starting to get back to normal. We start the every-other-day schedule of TPN next week!!!! Can't wait!!!

And he's already gained all the weight he lost at the hospital back!!!

We're coming home

2009-06-08T10:36:00.000-07:00

It has been decided that the best route to go right now is to put another line back in. The antibiotics that Chase has been taking have been giving him some major diarrhea. With that comes loss of fluids and the possibility of dehydration. The alternative would be to stay here while they run the antibiotics, wait for his gut to "go back to normal", then see how he responds to being off of the TPN and fluids. Now the last time he took antibiotics, it took 2 weeks for his gut to get back to normal. We all decided that it would be best to get him home, get through the antibiotics, push feeds, and aggressively ween him off of the TPN at home.

As much as we love Children's Boston, home is still the best. He has become afraid of the nurses because for a week straight he was getting an IV put in EVERY DAY!!!! Sometimes more than once. We finally got a PICC (semi-permanent IV), but the fear had already set in. And as Dr. Puder says: Parents know what's best for their child. I think I could get him off of this stuff and his line out better than anyone else. I know my son and his needs and what's best for him.......I think :)

The good news is, we are going to be off and free VERY SOON! Our (me, Randall, and Dr. Puder) goal is to get his line taken out during his July clinic visit. So just a little over a month. So he gets the new line in tomorrow and we'll be heading home Wednesday. Colton, mommy's coming home!!!!!!!!!!!!!!!

Prayer requests: 1. no line infections with the new line 2. quick recovery from the antibiotics 3. Chase gains weight quickly 4. Chase successfully weens himself off the the TPN and fluids and the line gets removed in July!!!!

Thanks for everyones support. We are almost there!!!!!!!!!! We were hoping he'd be line free for his birthday and he probably would have if it hadn't been for the infection. But our appointment is July 23rd. Only 20 days after his birthday. We'll take it!!!!!

Oh man! Sit. This is a long one!

2009-06-05T11:12:00.000-07:00

Well, what was suppose to be a short visit to clinic turned into an admit into Children's Hospital Boston. That's right. We are stuck up here in Boston. Not that this is a bad thing because if you gotta be stuck in a hospital, this is the place to be.

Still.

We got here Wednesday and Wed. night Chase was acting kinda funny, like he was sick. So at midnight we walk our little boy over to the ER at Children's. Sure enough, 100.2 temp. So after some Motrin, blood cultures, and a dose of antibiotics, they sent us back to our hotel.

Thursday we went to clinic. It was really a great clinic visit, too. But because of the infection (that's what the temp. was telling us at least) we couldn't really enjoy it. They told us that Chase would be taken off EVERYTHING for three nights a week. THREE WHOLE NIGHTS!!!!!!!!! You can imagine the plans that were going through my head.

Friday morning, 1:45 am. The ER calls, the blood cultures came back positive and we have to come back in immediately. Line infection. Seriously?!?!?!?!?

So we go, tons of docs and nurses come in and ask us all the same questions. At 5:00am they admit us into a hospital room.

So here we are a week later.

Why so long??

This is the good part............

It turns out Chase had enterococcus, a type of bacterial infection, and a yeast infection. Result? The central line (permanent IV) had to come out. So Sunday evening about 11:30 pm he goes down to the OR to get his line out.

Why is this the good part you ask????

Because, after speaking with Dr. Puder, we might be able to leave the line out!

Let me repeat.....

LEAVE THE LINE OUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

What does this mean????

It means: no more line infections, no more TPN, no more Omegaven (white gold us SBS moms like to call it.) Chase would be free!!!!!!!!!!!!!!

FREE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

No more hook-ups to his IV at night. No more tube hanging out from under his right arm. One less hole in his beautiful body, AND

BATHS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! If the line stays out, we can give Chase a real bath. And we can let him go swimming with his brother in the kiddie pool, and we can squirt him with a waterhose, and we can take him to the beach!!!!!!!!!!!!!!!!!!!!!

SO EXCITING!!!

We're not out of the water just yet. Chase has to prove that he can maintain and gain weight without the help of TPN and Omegaven and his electrolytes have to stay stable. So far, he is doing GREAT!!! We had a bout of "the squirts" which did cause him to lose some weight. But this morning, the squirts were gone, and his weight went up!!!!!!!!!!!!!!!!!!!!!!!!

The answer: Prayer.

And we are asking for as much prayer as possible right now!!! This is a GINORMOUS step for Chase, and short-gut in general. We really want this for him. This is just one step closer to a normal (oops, sorry Brogans, typical) life for Chase.....and what more could parents ask for.

It's going to be another two weeks before we are done running antibiotics to get rid of the infections which means two more weeks up here. But if the end result is no line, we'll take it. But it also means that much more time away from my Colton. The little ray of sunshine that always brightens the worst of days. I'm not asking for prayer for strength or comfort, just peace while being away from my other son. It's TORTURE.

So get ready for some celebrating, because.............

WE'RE COMING HOME WITHOUT A LINE, THANK YOU LORD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

GO, CHASE, GO!!!!!!!!!!!!!!!!!!!!!!!!!!

"I CAN DO ALL THINGS THROUGH CHRIST WHO STRENGTHENS ME." Phillipians 4:13

Boston or bust!

2009-05-26T10:24:00.000-07:00

We head for Boston tomorrow! We'll give a full report as soon as we get back. Hoping and believing in good news!!!!!!!!

How could I forget?!?!?!

2009-05-21T18:47:00.000-07:00

I can't believe that I forgot to mention that Chase is pulling himself up to standing position and has, just in the past day or two, started walking alongside the couch. He'll be up and walking on his own in no time!!!! My little man is growing up so fast!!!!!!!!!

As for his hearing. I finally got to talk personally with the auditory neuropathy guru, Charles Berlin, yesterday. Conclusion: don't use the hearing aids. So Chase will not be using HA after all. And after discussing his developmental milestones, particularly in language and listening skills, Dr. Berlin suggested that there may be a good chance that Chase will be one of those children with AN with no interference in their hearing and language development!!!!!!!!! Only 7% of the AN population have this type of "results." It is still up in the air since Chase really hasn't developed enough language skills to determine the impact of AN on his hearing and language, but the hope is there!!!!!!!!!!!! And we definitely have the FAITH that God will once again prevail and heal our son's hearing!!!!

AND.......I never in a million years would have thought one of my kids would have curly hair, but sure enough.........Chase's hair is curly!!!!!!!!!!!! Now that it is growing out, little curls are starting to twist all over his beautiful little head!!! The only explanation....he got it from my granddaddy, his great-granddaddy, who he actually got his middle name, Roberts, from! So excited that I have a curly-haired baby!!!!!!!! When he was born we thought we saw some curls there, but they soon disappeared. But they're back!!!!!!! Yea!!! What a lady-killer he's going to be!!!!!!

Sorry!

2009-05-20T19:50:00.000-07:00

What I've been doing the past few weeks, I don't know. But here's a short update:

Chase was continuing to have loose stool after we stopped giving the antibiotics so we called Boston. First assumption was C-Diff or Rotavirus. We went to his ped., took some stool samples (that I gathered myself I might add.....ewww). Results came back negative. So now we are thinking that I just increased his feeds too much, too quickly during and after the antibiotics were run. His stools are now looking better and we're at 5 diapies a day. But it's nothing like our 1 or 2 diapies a day with some seriously good-looking poopies. So keep this in your prayers. (Yes, I am asking you to pray about poop again!!!!!)

We didn't get to visit Mickey Mouse's house for Colton's birthday after all. After talking with Chase's ped. we were advised not to go due to SERIOUS germs and Chase having no immunizations. So we threw a birthday party together really fast for his birthday. Veggietales was the theme of the day. Colton is Bob the Tomato's biggest fan!!!!!!!!!! He is only two and he can tell us what's going to happen next in some of the Veggietale movies. Needless to say, his second birthday was great! Surrounded by family. Who could ask for anything more?!?! Still wish we could have spoiled him a bit more, though............maybe next year :)

We recently bought our first home!!!! Yea!!!!! So exciting, but also very time-consuming. You see, we bought a foreclosure and as a result, the house is completely gutted. Whoever lived there before took everything......and I mean everything. No cabinets, no sinks, no vent covers, no lights, no doors, and even toilets. That's right, they took the toilets!!!!! I would have too if some stupid bank kicked me out of our home. Anyways, we are trying to "put it all together" one missing item at a time. Let's just say, Lowe's is like a second home now.

We had an incredibly gifted photographer come out to take some photos of our boys since Colton is 2 and Chase will be turning 1 very soon ( I know, I can't believe it either!!!) We hope to get some announcements made and sent out. And speaking of photos, I have taken on the project of FINALLY organizing all of our photos and actually putting them into photo albums instead of just leaving them in a file in our computer. Much, MUCH bigger task than I thought it would be.

Oh yeah, we had Mother's Day, too. We didn't do anything special. But I'm just elated that I get to put myself in this esteemed category and adore the two little boys I get to call my own. I've become quite a guppy since I've become a mom and find myself with tear-filled eyes sometimes just watching my boys. God has given me the gift of the best job in the world as a stay-at-home mother, though difficult at times, but a blessing beyond compare. And just a little shout-out for my mom. She is the spunkiest, most energetic, most driven, most determined woman I have ever met. She is also the most sacrificing, giving everyone else her time. She will drop anything she was doing or might want to do to help others.........especially me. And me being so undeserving!!!! I am a spoiled child and yet she still covers me in her love. I can only hope to be as giving as her one day. I love, love, love you Mom!!!

Okay, maybe it was a long update. Sorry. But Happy Belated Mother's Day to all you Moms out there. And a special Happy Mother's Day to all you mommy's who have sick children either at home or in the hospital. Give all your concerns to God. Cast all your cares upon Him. This will be my prayer for you and that God will fill you with the peace He so often gave me (and continues to give) during my darkest hours.

Miracles still happening

2009-05-06T17:38:00.000-07:00

I just wanted to share a story that happened to us today that just proves that Chase's story is STILL a testimony to many.

We got a phone call from Chase's original surgeon. This is the surgeon who opened up Chase two times to find necrotic (completely dead) small bowels. In fact, the second "look" showed decomposing bowels. From this discovery we made the decision to let our son go home to our Lord and not suffer a miserable life here with us. (Again, a personal decision made with what information we had).

Now, Chase survived and recovered with a BEAUTIFUL 37 cm. of bowels. Many would get angry and blame the surgeon for his "mistake" and I'm sure that he thought he was going to get a reaction from us today verifying that anger. But he did not. You see, I don't blame him for ANYTHING. I'm pretty sure if anyone, doctor or not, opened up a person and there was necrotic organs of any kind, we would be able to identify it as so. When an organ or any part of the body is necrotic, it's black and really smelly.....like rot. So I don't think he made a mistake. I know that what happened with Chase is an absolute miracle.

This leads to today's testimony. He wanted to let us know that he was really happy with how things turned out. In turn, I reminded him that I told him after the first surgery that "God will perform a miracle. He will, you wait and see." And even though this miracle didn't happen how we "supposed" it to happen, it did happen.........on God's time. Well, his response was...."well being in the medical profession, we tend to drift away from religion. But this story has brought me back to it."
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HOW COOL IS THAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! CHASE'S STORY RENEWED HIS FAITH!!!!!!!!!!!!!!!!!!! HALLELUJAH!!!!!!!!!!!!!!!!!!!!
I can't express how wonderful it was to hear this. It's like it was something I had been waiting for, even though I didn't know what it was I was waiting for, until it happened today. Like there was something I was missing, unknowingly, and it was fulfilled today. God's work.........it's ever so majestic and mighty.

We talked about many things, a visit included. But the story above was, by far, the best part. And I must give him some major credit. He had the guts to call us, knowing it might be ugly. But he let us know that we've been on his mind ever since he gave us the "news." God bless you Doc. God used you in an mighty way and none of us knew how until the whole picture was drawn. I pray that he will continue to touch you and you will grow with him and he can use you in a mighty way in the medical field.

AMEN, AMEN, AMEN!!!!!!!!

Feeding update

2009-05-04T08:41:00.000-07:00

Chase is up to 30 ounces of formula a day, eats Stage 3 baby foods 3 times a day, enjoys mashed and sweet potatoes, and can eat Graduate puffs!!!!!! Yea Chase!!!!!

He's 18.5 lbs. The antibiotics he was on last week gave him some serious diarrhea so we think this may have prevented him from gaining anymore weight, but at least he maintained. His poopies are starting to get back to normal, though, thankfully!

He gets his new, shiny hearing aids/FM systems on May 11th.

Mother's Day Gift Idea

2009-05-03T07:48:00.000-07:00

Hey everyone,

Just going to get on my soapbox for a second. Wanted to share a great mother's day gift. Tom's Shoes. They are incredibly cute AND comfy (trust me, I have a pair and just bought another). And to top it off, for each pair of shoes you buy, a pair of shoes is given to a needy child in a third-world country (right now they are focusing on Argentina but are headed for Africa soon). Seriously, they are great. And there is such a big selection for moms, dads, and kids. I bought a pair for Colton, too. Why not do something good for someone else WHILE shoe shopping!!! (Okay, I'll get off my soapbox now) Just go to tomsshoes.com, get a pair, and change the life of a child all the way around the world. Plus, make your mom really happy with her new shoes :)
I bought a pair for my mom! (Sorry, mom. Hope this doesn't ruin the surprise!)

promised pics

2009-04-30T12:06:00.000-07:00

That cast-looking thing on his arm is a heavy, wrap-type thing called a "no-no" that they wrap around an IV site so that little ones don't mess with the IV.

Not too heavy to wave "Hi" to everyone

Prison Cell

......and yet, still smiling!

Look at how ADORABLE!!!!

Everything looks good!

2009-04-27T13:42:00.000-07:00

We went to Chase's follow-up appointment today and everything looks good! No need for more labs. Just two more days of antibiotics. Which will be nice because they're giving poor little frog the "squirts" which is exactly what he doesn't need. We hope it stops as soon as the antibiotics are done.

He is eating really well. We've cut back his tube feeds at night from 8 hours to 4 hours. He is still at 24 ounces/day but we are eating most of them during the day. And he has really taken to Stage 3 baby foods. He ate practically a whole jar (I'd say 7/8) last night! Very impressive for our little frog!

In just 2 1/2 weeks my little peanut is going to be 2..................2!!!!!!!!!!!!!!!!!!!!!!! I'm not sure how I feel about this. He's so grown up, I can't stand it. I hope we can spoil him like crazy at Disney, he really deserves it after the year he's had......living at the Ronald McDonald House, then the apartment in St. Pete, then the apartment in Boston, and with Meemaw and Pappaw in between........he needs some special "Colton time!" He's been so great about it, too. I think he might have the travel bug in him :) Every moment spent away from him was just added torture in an already unnerving situation. But we're praising God now because all 4 of us are home now, enjoying each and every second of it! He's going to be the BEST big brother possible (with a few pickins, I'm sure. They're brothers. It's only natural.).

Oh, much better!!

2009-04-23T19:50:00.000-07:00

Colton didn't have a fever today and his nose dripped maybe once today. Much, MUCH better day. Just another answered prayer........He'll listen to all request, trust me :)!

In other news.......

CHASE IS CRAWLING!!!!!!!!!!!!!!!!!!!
It's kind of an awkward crawl...more like thrusting himself forward, but it gets him from point A to point B!! He's so excited and proud of himself, too (and so he should be). He's also imitating A LOT of words (so much for a hearing loss, right?! God is SOOO good!). He tries to imitate "more," "no," "all done," "throw," "mama," "dada," "bubba," and "yea!" In fact, after every verse of "The Wheels on the Bus" he does his "yea!" He is so incredibly adorable you just want to eat him up. And I promise, when I figure out how to get video on this thing, I will prove it!!!
He has also advanced to Stage 3 baby foods. We're taking it slow, because they really do have a lot of chunks in them, but so far so good.

Colton is growing up way too fast as well!!! He is answering yes/no questions, he tells his brother "stop it" (it really is kinda cute), he's sleeping in a big boy bed, and he's learning to use the potty. And in 3 weeks, he's going to be 2yrs. old. What is going on with my babies?!?!? Why are they growing up so fast?!?! Next thing you know, they're going to be headed out the door on their first date (oh no).

Ahhhhhh.................

2009-04-22T19:34:00.000-07:00

We got home at about 4 pm yesterday. All was well. Chase went to bed, Colton went to bed shortly after, and Randall and I were just relaxing watching Biggest Loser (while I ate some Oreos, I might add!). Then at about 10pm Colton woke up with a stuffy, runny nose unable to sleep. So we took him to bed with us. He tossed and tumbled ALL night. At about 4am he woke up with a fever of 101 degrees. Yep. My other little muffin is sick now, too. So that sleep I was soooo looking forward to after getting home from the hospital (cause everyone knows, it is nearly impossible to get any sleep in a hospital), yeah, that didn't happen. Maybe tonight :(

It has been quite a task today trying to keep both boys happy while trying to keep them away from each other while also washing my hands constantly and following behind them with lysol!!! To make things worse, I had to run to Immokalee (30 mins from home) to pick up Chase's antibiotics, then run over to Naples (30 mins from Immokalee) and meet with a home health nurse to show me how to run his antibiotics. Then made the 45 min. ride back home. We did have a GI appointment in Ft. Myers (would have been 2 more hours of driving) but amongst all the chaos, I decided to cancel. Wondering why I had to run around for all this???? Yea, I live on a ranch. No one, and I mean no one, comes out here for anything. We don't even get mail out here. So if we need anything, we have to make the drive to town.

I have to admit, I'd rather be home amongst all this chaos than at the hospital. So it is still "Home sweet Home" just with a few added extras! :)

Awesome Bible Verse

2009-04-20T21:25:00.000-07:00

Found while reading The Power of a Praying Parent.

"When you pass through the waters, I will be with you;
and through the rivers, they shall not overflow you.
When you walk through the fire, you shall not be burned,
nor shall the flame scorch you."
Isaiah 43:2

Dreaming of home

2009-04-20T19:01:00.000-07:00

Hey everyone,
I THINK we are coming home tomorrow. I THINK they've got everything worked out for Chase's antibiotics to come home and a quick teach on how to administer them. But I won't hold my breath. I am at a hospital, you know! They've been great, don't get me wrong.......but it's not Boston! :)

We have his monthly labs on Wednesday in Ft. Myers, which is the same day they're going to send out a home-health nurse to do the "teaching" which will have to meet with in Naples( don't know how that's going to go down), Friday we have to do some MORE labs, and Monday they want me to come back to clinic for more labs. Geez!!!

On top of it all, my poor husband is sick with (we hope) just a cold. Don't really want to bring Chase home to more sickness. Don't know how that's going to work.

But Chase is so incredibly bored, I just need to get him out of this joint. He's either in the crib or in my lap. He's used to running around in his walker, jumping in his jumper, playing (watching) with his brother, or rolling around on the floor. Okay, well this is what he would be doing if he wasn't so content with staying attached to mommy's hip! :)

I need to get home to my other baby. I am definitely one of those moms who can't stay away from their babies for too long. I think it's a waste of time to get my hair done (wasted time that could be spent with my kids) much less be away from them (or one of them) for a whole week. I NEED a Colton fix!! :)

And if one more nurse or doctor comes in, voices blaring, while Chase is sleeping and wakes him up, I am going to SCREAM!!!!!!!!!! Four times today..........FOUR TIMES!!!!!!!!!!!!!

Sorry, think I'm getting a little cabin fever. Randall was here Saturday night and Sunday and said that I was starting to mumble unintelligible sentences and not making any sense whatsoever! And to think I thought I was doing so well even with the sleep deprivation.......not so much! :)

2009-04-18T20:30:00.001-07:00

Hey everyone. Well, since docs don't work on the weekend, it looks like we'll be shooting for Tuesday for discharge. Chase is doing great, blood cultures continue to be negative and no fevers. He is back up to his normal amount on feedings and frankly, he is just a big wiggle worm. Seriously, I should have some buff arms before he starts walking :)~ He's all over the place.

As soon as we get home I'll post some pics of our hospital visit for you. Right now I'm borrowing mom's computer (Thanks Mom!) and can't download on her files.

On a side note: Please watch a TV interview of a family going through the wait of a small bowel transplant. Those of you who have followed us from the beginning.....we aren't the only ones praying for poop!!!!!!!!! Go to www.abcnews.com, click on Nightline at the top of the site, and watch "the boy who could not eat" Part 2 first, and then Part 1 (they must have gotten it backwards).

Hope to see some familiar faces soon! I missed Uncle Cecil and Aunt Rita's visit today while I went home to pick up Chase's meds. Sorry Uncle Cecil and Aunt Rita, I love y'all!!!!!

Culture update

2009-04-17T13:37:00.001-07:00

YEA!!!!!!!!!!!! Both of Chase's blood cultures from yesterday came back negative. Hopefully, just a couple more days and we're busting outta here!!!!!

Extended Stay

2009-04-16T20:00:00.000-07:00

Well, the docs found two types of bacteria in Chase's line and in his bloodstream. We'll be staying here until the bacteria is sterile. So our homecoming is unknown at the moment. But, he has not had a fever since we first got here and he was in really good spirits today. He's definitely feeling much better!

Pappaw came by to see him and that just made his day. He's quite a hit around here, but that shouldn't be a surprise. He's so cute, if I do say so myself. He has been smiling, laughing, and waving at EVERYONE who walks by him.

On a side note: he is up to 19 lbs. and growing. This is great news because he continues to gain (significant) weight even after his TPN volume was reduced by nearly half. Just a good indication that his short, but beautiful, bowels are doing a lot of the work themselves!! (Go bowels!!!)

All the docs have been very surprised to see how well he is and even more surprised that this is his first line infection. I take for granted how blessed we are sometimes, caught up in everyday "stuff." The whole time we're complimented on his progress, I thank the Lord for his endless blessings on our family. I know we wouldn't be where we are today without his enduring love.

I would like to ask everyone to lift up our little friend, Andres. He seems to be going through a tough time and we just really want to lift him up. To learn more about his story, please visit his website through the link under the "Friends We Love" list on this site. His parents were in the Ronald McDonald House with us in St. Pete and we've grown to love them.

I'll try to keep up the info. for all of y'all as much as possible. Blog soon!! :)

2009-04-15T19:13:00.000-07:00

Well, I always dreaded this might happen to Chase. We are in the hospital again. Chase has a line infection. This might not sound like a big deal to "non-short gut people" but actually it really is. Because his central line is "dumped" directly into his bloodstream, so is whatever bacterial infection that's in his line. So a bacterial infection is in his blood. No good. He is getting two types of antibiotics and we are in here until his blood cultures come back negative for three consecutive days. We get to go home after this but he'll still have to be on antibiotics for 10-14 days at home.

We came to the ER at about 10:00 last night and Chase had a fever of 104.4!!! They did all kinds of labs (which were horrible for our little man) and then we waited....and waited.....and waited. At about 4:00am we got all the labs back (except blood cultures) and even though these labs were negative, it was decided that Chase would be admitted. Thank goodness, seeing that he actually does have an infection. So we were moved to Peds. at 5:00 am into a treatment room......not an actual room. Finally, at 1:00 pm today we got into his room. And I will not complain AT ALL about this room. It's private, there's a shower and a sink, a TV and DVD player, a recliner, ............AND A BED FOR MOMMY!!!! Wow!!! Who knew hospital rooms could be so nice. After a little over a month of TERRIBLE hospital accomodations, this place rocks!!!

Chase is doing incredibly well. Even with a temperature of 104 he was smiling and laughing with all the nurses. His temperature came back down on its own with no meds. It's fluctuated a couple of times since then and we did give him Motrin once but his temperature has been normal ever since. I can't believe what a little trooper our little guy is. They did have to put an IV in his arm (yuck) to administer one of the antibiotics and he's got a sort of cast-like thing wrapped around it so he won't mess with it. And yet, he is still being my charming, smiling, laughing, social, little bug. If you can't see God in this little guy, you must be blind.

I'm concerned like any mom would be, but I know God's got this under control. Just a little bump in the road. We've already got a team of prayer warriors lifting him up and any and all prayers are welcome.

Heard this verse mentioned on the radio today and knew it was a message just for us. Make sure you look it up: Issiah 41:10

God is good!!!!

Hearing update

2009-04-10T11:50:00.000-07:00

We had Chase's sound booth evaluation last week. In my opinion, all good news. We discovered that he has a moderate hearing loss. This means that he is NOT deaf, he can hear, just not as well as you and I might. The chart above can hopefully give you a visual of what I'm talking about. His hearing is around the two people who look like they are about to kiss. The even better news is, it could be better. So we know, if there is a loss, it is no worse than a moderate loss and that could even be better (that's the one I'm leaning more towards!)

However, just for precautionary reasons, they took an ear mold and he is getting an FM system. This is just to make sure that he does pick up on all the speech sounds so that his speech and language develops normally. Now how cute is my little frog going to look with miniature, behind-the-ear hearing aids?!?!?!?!?! We got them is royal blue so we can decorate them in Gator colors!!! That's right, he's already a HUGE fan!!!!!

He has also reached his goal with feedings. He is now taking 25 ounces a day. Now they can start to consider weening him off of the TPN!!!!!!!!!!!!! Can't wait to see what they decide at his next labs (April 22, Earth Day!!!)

We would like to wish everyone a Happy Easter!! It's a special time for us because this time over 2000 years ago, Jesus was imprinted with a stripe just for our son, Chase. It's overwhelming to KNOW (not think, KNOW) that while He was being tortured He thought to Himself, "this is for Chase, so that he may be healed." And not just Chase, he thought of all of us.......including you reading this blog right now. May God shower you with many blessings this Easter. Praise Him and thank Him for all He has done...........for all of us!

2009-03-28T08:46:00.000-07:00

Lil' Papa and the boys. It was camo day at church!

Going for a ride!

Chase fell asleep on the ride!

Chase is FINALLY sitting up all by himself!

Ahhhh, my boys!!

Chase has recently had a few developmental scales done to see how he is progressing on a developmental scale. So far, he is right on target........in ALL areas: motor, cognitive, communication, and even hearing. He's even above average in a few areas. My smart little bean!!! We do have a hearing aid evaluation on Wednesday of this week to see if some type of hearing device would be appropriate for him right now. In my opinion, I would like to try an FM system. It's exactly what some classrooms use in schools. The teacher wears a microphone around their neck and her voice is amplified throughout the room. Well, for Chase, it would be kind of like a hearing aid. But instead of amplifying ALL sounds, I would wear a microphone and the little device in his ear will only amplify my voice (or whoever is speaking into the mic). This way, background noise is drowned out and he is getting speech sounds directly into his ears. This will help him to hear every and all speech sounds so that his language and speech skills will hopefully develop normally without any distractions from background noise (sorry, little bit of speech pathologist talking there). Lord knows we've got a lot of background noise with Colton running around.

Speaking of, Colton has become quite the chatterbox. He'll tell you a whole story with facial expressions and hand motions and all........even though you can't understand a word he says. He is so much fun. Unfortunately, he's figured out that the little blob (Chase) isn't leaving and he's become quite jealous. Especially when it comes to Daddy and Lil' Papa (that's what Colton calls Grandpa, so cute). So we are trying to love on him as much as possible. We're even taking him to Disneyworld for his 2nd birthday in May, just to spoil him a bit. Well, Mommy needs her Disney fix, too!! :) It's been a whole year since we last went......that's just not normal for us!

We've got a busy week ahead of us. On April 3 Chase turns 9 mos. old, April 4 is Randall's birthday (we won't mention his age, hehe), April 5 is Lil' Papa's birthday (again no age mentioned), April 10 is Uncle Brett's birthday (Happy Birthday Cuz, we love, love, love you!!), and April 12 is Easter and we've decided to have Easter here at our house. Anything to get our family together. We have been blessed with what I seriously think is the best family possible. Here in Immokalee, spread out all over Florida, and the bunch in Alabama! Family can't get any better than this!!! AND we get to see some of our Alabama gang in May at Disney (yea!!!!!)

Oh, I almost forgot to mention: Chase got his first tooth!!!!!!!!!!! And the rest of Colton's teeth have come in, so he's got a whole mouth full!! Their Aunt Sherri would be so proud, I'm sure. And we had to call Aunt Missy to tell her the news, too. Two aunts who are obsessed with teeth.....my kids will have such beautiful smiles :)! My kids are fortunate enough to have a heavenly tooth fairy named Aunt Sherri who will shower love on them from above. I hate that they didn't get to meet her, but they will hear PLENTY of stories!!!!

Please keep our niece, little Callie-bug, in your prayers. She's struggling with CP (cerebral palsy)and we're just asking for God to cover her with His comfort. We love you Callie-bug and Aunt Ni-Ni!!!!

2009-03-14T08:48:00.000-07:00

Colton and Chase both sleeping through their baptism!!

Bubba is a good cowboy!!!

What a flirt!!!!

Little piggy enjoying his cereal!

2009-03-14T08:22:00.000-07:00

Back from Boston!!

All is well!!! Chase is 17 lbs. 10 oz. and 26.8 in. long. All of his doctors and nurses were so excited to see him. And of course, he put on quite a show for them: giggling, smiling, jumping, babbling, and all those little charming things he does that just makes our hearts melt.

They reduced his TPN volume from 500ml/night to 300ml/night!!! That is a drastic drop, but we are praying and hoping for the best. As long as he continues to gain weight, we're all good. 300ml/night is the lowest amount they will go before they start to cut back on the number of nights he is on TPN. Right now he is on TPN every night for 12 hours. If his weight continues to go up, the next time we go to Boston in May, they will most likely cut back on the number of nights. From there, it's just a matter of time before he is off of TPN all together. All in all, our little fighter (with the help and guidance of our Heavenly Father) is KICKIN' SHORT GUT'S BUTT!!! Wahoooooooo!!!!!!!!!!!!

We also got the OK to move to Stage 2 baby food, table foods like mashed potatoes, teething biscuits, and a sippy cup. We are also hoping that cutting back on the TPN will really increase his appetite so we can reach the 24 oz/day goal. We may even be able to switch to regular formula when he turns 1 yr. old. That's in 4 months, can you believe it?!?!?!?!

Chase has a lot of audiology appointments in the next month for his hearing, but we are confident that God has already taken care of that. He is responding to sounds, voices, and even whispers AND he has started babbling: dadadada, mamamama, babababa, and bububububu. Music to our ears!!!!!!!!!!

Prayers are always welcome and appreciated. When the end seems to be in sight, we forget to talk to the man upstairs, the one who is the reason our son is here in the first place. I have to remind myself of this often. Gotta give credit where credit is due, and He definitely deserves ALL the praise and glory for how far our little frog has come.

2009-03-05T19:21:00.000-08:00

We head out for Boston on Wednesday. Even though it is a long, costly trip, we really enjoy going to see all of Chase's doctors and nurses. They are the best.

We did get his lab results for February. Doc reported that everything was fine, but some of the numbers had fluctuated so I want to see what his Boston docs say about the results.

Chase is up to 90cc or 3 1/4 ounces per bottle with 5 bottles a day. So that puts us at 15 ounces a day! Only 9 more per day to go!! And he is eating solids three times a day: cereal for breakfast, and a fruit or veggie for lunch and dinner. He is also up to 17 lbs. He is our growing little boy! We still can't get over what God has done for us. Every day we look into those sweet brown eyes and realize what a gift we have.

Oh yeah, he turned 8 months old on Tuesday!!!!! Yea!!!!!!!!!!!

Chase's story

2009-02-20T12:06:00.000-08:00

While I was pregnant with Chase, his small intestine somehow twisted around itself cutting off blood supply to the intestines. When he was born on July 3, 2008 by emergency C-section his belly was distended and he vomitted green bile shortly after he was born. He was immediately rushed to a nearby NICU. The prayers started rolling then.

At first the doctors thought that he just had a block and that it could be easily removed. But shortly after this "prediction" we got the call. The pediatric surgeon did some X-rays and noticed that Chase had malrotation volvulus (twisting had cut off the blood supply) and that surgery was needed immediately to see how much damage was done. So on July 4 Chase went in for his first surgery. The outcome, heartwrenching......none of his small intestines had survived. Option: take another look in 48 hours to see if any had recovered. If not, there was no hope. More prayers lifted up. So on July 6 Chase went in for his second surgery. Again, no good tissue. We later found out that all of his small intestines were not only dead, but starting to decompose. Options: Try to keep him alive until a transplant could be performed and could only give us a 25% survival rate and a really hard life or let him go home to his Father in heaven. Now not everyone may agree with our choice, but we are deeply rooted in our faith and we chose to let our little boy go home. This is not to say that we gave up. We started praying and we got a really big, big, BIG chain of prayer warriors all praying with us. We were asking for a miracle, because at this point that was the only hope we had.

He was immediately taken off any nutrition and all antibiotics. The only thing our little baby was getting was sugar water to keep him from dehydration (which they later wanted to also take him off of) and heavy pain meds to stop any pain. According to the doctors, the dead tissue inside of our son would become infected and eventually take his life. And this all would happen within a few days.

After nine grueling days of wondering every second if this was the moment our son would leave us, Chase was in great health. No infection had set in, his heart rate was perfect, his breathing was perfect, and he never got a fever. After much discussion, we decided to take our son to another hospital for a second opinion. So immediately we left for All Childrens' Hospital in St. Petersburg, FL.

After an overnight stay, on July 15th Chase went in for his third surgery. A lot of surgery for a nine-day old little man. But our little frog is a fighter and he had the love of God on his side. The surgeon opened up our little guy and saw NO DEAD BOWEL!!!!!!

This is not to say that this was the end of his battle, by no means. But God had given us a true, undeniable miracle. Where there once was dead bowels there was living, thriving tissue. We are forever grateful to Him and continuously praising Him for His awesome power.

The rest of Chase's story will be told at a later time. He is now 7 months old and a happy, healthy little blessing. We just recently were given the final verdict that he does in fact have auditory neuropathy. We don't know much about this yet, but will let everyone know when we do.

Psalm 18:19b "God rescued me, because He delighted in me."