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!

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!!!!

Colton and Chase both sleeping through their baptism!!

Bubba is a good cowboy!!!

What a flirt!!!!

Little piggy enjoying his cereal!

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.

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!!!!!!!!!!!