promised pics

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!

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!!

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.................

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

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

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! :)

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

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

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!! :)

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

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!