Remembering His faithfulness

One year ago today.....

-the drs. believed it was crucial for Caed's emotional and mental well-being to allow him a 4 hr. pass out of the hospital. (after being there 59 consecutive days)

-Caed's tube feeds were only at 14 ml/hr (approx. 3 tsp.) continuously.

-He walked in pain

-His g-tube drained continuously to give his stomach a break (from throwing up so much)

-He could not eat by mouth, but only sipped on small amounts of water

-He did not talk much, and had lost his "spirited" personality

-Caed was suffering emotionally from Post Traumatic Stress



Today........

-Caed is home

-his tube feeds are at 120 ml/hr for only 16 hrs a day

-He can do FLIPS on the trampoline pain free

-His g-tube remains closed when not on feeds

-He can eat anything (within reason of his sbs diet)

-He talks and laughs continuously

-Caed shows NO signs of PTS


The LORD is my strength and my shield; my heart trusts in Him, and I am helped. My heart LEAPS FOR JOY and I will give thanks to Him in song. (Psalm 28:7)




Taste and see that the LORD is good....... (Psalm 34:8)

Latest Report

Heard from Nebraska today. I will try my best to summarize all the info:

• overall tests came back good...nothing needs to be changed at this time.

• his small bowel series did report an area of narrowing/stricture - but this is most likely helping him, not hurting him. The reason is because the narrowing is slowing his transit time down, so food/fluids are getting "caught up" in this area. (slowing things down and making it easier for his intestine to absorb.) This "back up" is also not causing him issues with bacterial overgrowth. They said he may run into problems with it down the road - the stricture could lead to dilation and the need for a bowel lengthening surgery, or it may not do anything. As Caed gets bigger, so will his intestine....not so much in length but in diameter. They told us about another patient they have that is Caed's age that has had a "functional obstruction" for a few years, but is thriving and has not needed surgery. The good thing about Caed's bowel is that it was "normal" prior to the volvulus....it was already able to absorb nutrients.....unlike most patients who have intestines that have never been used.

• Vitamin levels are improving.

• His bacterial overgrowth was very minimal - nothing that needs to be treated with antibiotics.

• come back in 6 months (Oct.) - possible need for another scope, but this time they would do it just for bac. overgrowth (not biopsies), and will attempt it without anesthesia by placing the scope through his g-tube site. (aspirating some fluid from his bowel and then taking the scope out)

So.....in one sense, we have much to praise God for! Overall, everything looked great! They continue to be amazed at how well Caed looks. But, in another, this report was just one more reminder of how this will never be over! My heart is so heavy tonight. He has come so far and made such huge strides. Even today (while I was taking Caleb to our pediatrician), the dr. commented on how wonderful Caed looked and how "no one would ever know he was "sick." It's so true! He looks, acts, everything.....like a normal little 5 yr. old. And yet, getting reports back like this and being told more surgery could be a possibility....or that he currently has a stricture.....OH, how I just wish this were only a bad dream! Don't hear me wrong. We have SO MUCH to be thankful for. I absolutely know that and also know that Caed's future has not be foreseen by any medical professional. We have NO idea what his future holds or doesn't hold. The Lord could mercifully and miraculously heal his body completely. With no medical explanation. I believe that! I do!! It's just my sinful nature rearing it's ugly head and seeds of fear and doubt taking root. I can't go there. I can't worry about something that hasn't even happened yet. Satan is taking this "good report" from the doctors and turning it into something awful for me. I am not going to allow it.

SO.........THANK YOU God for Your healing hand in Caed's life. Thank you that he "won a dance competition" at AWANAS tonight and was so excited to show me his "golden trophy!" Thank you for Sugar Free snow cones and the simple fact that he can enjoy eating them! Thank you for my little "rocketman" t-ball player and the strength and athletic ability he is able to use! Thank you for his contagious laugh, hilarious sense of humor, and the way he lights up a room!

....but most of all.....THANK YOU for sparing his life, for bringing him this far, and allowing me to be his Mommy! You are GOOD!!!!!!!!


sharing his favorite snow cone (#51 - Sugar Free Strawberry)

He's moved up to his new "bigger" bike..........hasn't slowed down a bit - in fact he's probably faster now.

1st cut

I know it doesn't look like it.....but yes, Caleb got his 1st haircut this morning! We were worried that if we cut it, the curls would disappear. Now, we may not have cut enough to really know for sure, but so far....so good. I probably cut a good inch off, and it still looks like this. ha!

Devin's story

If you missed Nightline last night.....you can still watch it online.

www.abcnews.com (click on Nightline at the top) You actually need to watch Part 2 first....then Part 1. (I think they got reversed)

Anyway, it really touched us. I cried through the entire show. I guess it just hit a little too close to home for me! We were SO close to this one year ago (after Caed's 3rd bowel resection) when the drs. felt a bowel/stomach transplant was the only option left for Caed. I PRAISE GOD everyday that He slowly began healing him over the course of the summer. I know Caed is not completely out of the woods. With Short Gut, you just never know. This is something he will live with for the rest of his life. We can only continue to pray for God to grant him mercy and ultimate healing.

Caed actually watched most of it this morning. He kept wanting to see Devin's "tummy" (intestines). He had lots of questions regarding his own surgeries, and thought it was so cool that Devin had a g-tube and central line just like him!! Hope it was a good idea to let him see it. I know he does not fully understand what all has happened to him, but I love showing him other kids that wear backpacks or have g-tubes, etc.... Helps him to feel he's not the only one. That's why Devin has become so special to us. He is the only other child (boy) Caed's age! And his mom has helped me so much in understanding this illness. Thank you Colleen!!! What a joy it would be if some day we could meet!

Check those TV Guides!

I wanted to share with you a story about a special little boy that we have come to love. His name is Devin and he was born with Short Bowel Syndrome. He is Caed's age and has just recently received a life saving bowel transplant. He and his family currently live in New York, and I have surely come to love his Mommy. She has listened to me and given much needed advice. Most of the short gut kids that I am aware of are babies or toddlers. I was SO happy to hear about Devin!

Nightline (10:30 pm -ABC) has been following Devin's story, and has put together a piece that (should) air TONIGHT!! (Apr. 17th). Check your local listings.

April is National Donor Awareness Month and it is only fitting that Devin's story is told now. Please set your DVR's or make a point to watch it!! We love this family and are so glad the media has picked up their wonderful story.

Home again

We made it home just fine today. The Lord sure had His hand in allowing certain circumstances to fall into place.....we had zero problems. Thank you again Kendall for ALL you do for us when we travel. You're like our own personal travel agent! We love you so much!!! Thank you also for pulling some strings and allowing Caed the opportunity to get in the cockpit. I know he was excited and a little nervous at the same time.

Who would ever think this same little ball player went through what he did the past 2 days? He had a game tonight, and we were able to make it back in perfect time. He "pitched" again this game and made some really great plays. Even caught a hard line drive right in the chest! They won their game again (ha!....actually they don't keep score, but Caed and the rest of his little team don't know that....in their minds, they are UNDEFEATED!!!)


Caed's pitching stance!!! It was so funny. I kept thinking if he got down any further he would tip over. However, at least he's ready!!!! Maybe that's how he was able to catch that hard line drive.


Safe!

7 hours and counting.......

I went into today thinking it was going to be "quick and easy" (at least 4 hours). The idea of the small bowel series is to inject the barium into his stomach via g-tube, and then take x-rays every 1/2 hour to monitor how it flows through. At one point (back when Caed was at his worst), it would sometimes take almost 24 hrs! But, the last one we had (Oct), it only took 4. So, I just naturally thought it would be the same again today. Boy was I wrong. 7 hours......!!! That is a long time for anyone, but especially a 5 yr. old. He was actually their 1st patient of the day.....and then became almost their last. Caed was supposed to be NPO for this, so...he went almost 20 hrs. without eating. Finally, even though the test was not over, they let us go up to the cafeteria around 3:00. Todd and I of course did not eat either because we didn't want him seeing us, so we were quite famished as well. It wasn't just the long day in radiology that made it such a hard day. It was also very emotional. There were several dilated loops (which is common for sbs), and then at one point the radiologist began talking about a certain area of Caed's bowel that looked a little constricted. It was very small and thin. My heart just sunk. Oh Lord....please no!!!! I can't continue going through this! For several hours after that.....I just felt sick to my stomach. I was on a high yesterday after hearing all the good reports from the drs, and now this. Why was it taking SO long to go through this time? What was happening? Is that little section of bowel a potential problem?

We still don't know anything. We will fly back home in the morning, and then be in contact with the drs. as soon as the biopsies and other lab results come back. I am exhausted physically and emotionally. This trip has literally worn me out!

Thank you for continuing to pray for Caed!!!


7 hours!!!!! Poor little guy!



Caed's bowel

Bitter...sweet

I have said before that sometimes the unthinkable doesn't happen to someone else....it happens to you! Today we were reminded of that again. We received devastating news from back home that one of our former youth passed away over night in her home. (her family is apart of our church and her mom one of the church secretaries) I honestly can't even find the words to say. We are all in shock and completely devastated. And yet...even now....even trying to sort through the pain and confusion, there is hope! Karley was a believer, and we know is now in the presence of God. I tried my best to explain to Caed why Mommy and Daddy were sad (and preoccupied), and his comment was...."But it's ok, cause she's (pointing upward) in heaven with Pop!" Out of the mouths of babes. Yes! Caed is right! And yet it doesn't take away the utter devastation that a mom, dad, sister and countless friends are engulfed in. Please pray for this precious family, the Sonntag's. Lord.....we need YOU!

Caed's hardest day is over. He was a trooper. It began in the treatment center with lots of blood draws and IV fluids. He has not had an IV without a central line in a very long time. So....this time was a little difficult, but we had a good "talk" and he was incredibly brave. The nurse was extremely complimentary of him, and said he did better than some of her adult patients.

We had a great clinic visit with his drs. They were so amazed at his progress!! Said his labs looked perfect, weight was good, and honestly couldn't be happier with his present condition. We will need to really push his ORS (drink) now more than ever with summer approaching and the amount of time he is out playing. The risk of getting dehydrated will be high. Dr. M also said he could begin drinking some G2 (low sugar Gatorade). Caed will love that. He loves his "special drink" but to give him another choice every now and then will be wonderful. (not to mention help him feel a little more normal) And praise God.....they DID lower his tube feed time by 2 hrs. So, now he will only be hooked up 16 hrs./day! He will continue lab draws/weight checks monthly, and if things continue to look good, we can lower it again in a couple of months. And just continue this pattern. They are also very pleased with the number of stools......3-4. As I was going through his "poop journal" calculating the last 4 months....it was so evident.....he is improving. And to top it all off, they don't want to see him again until OCTOBER!! Yea! Lord willing, this will be the case. (perfect time to come back to the pumpkin patch!)

Next was the scope. It was a little more difficult (physically and emotionally), but we got through it in one piece. Our GI dr. was also very pleased. He said his anatomy is still very "abnormal" (hard getting the scope through his stomach into the duodenum), but it definitely went faster this time than the past several scopes. He took lots of biopsies, but won't know anything for 2-3 more days. The first section of his small bowel continues to be dilated, and I'm sure we will see that more with tomorrow's small bowel series barium test. He doesn't think he has any bacterial overgrowth which is VERY common in short gut patients. Another praise! The lining of intestines "looked beautiful.....crystal clear!" Again, wonderful news! Caed did have trouble again coming out of anesthesia, but I think overall.....it was much quicker than all the previous times. They added some Fentanyl this time to the anesthesia, so possibly that helped out some.

Tomorrow will be the bone scan and the small bowel series. The hard part will be leaving on Thurs. without knowing in detail the results from all these tests (from our drs. viewpoint), but we stay in contact with them weekly, so I'm sure we will hear more soon.

Thank you again for your prayers for Caed today. Overall, he did wonderful!



Spending several hours in the treatment room for labs and IV

Again waiting several hours for the colonoscopy and EGD.

Stranded

....in Omaha and St. Louis.

We have had quite a day...to say the least! Oh...goodness, where do I begin? First of all, I want to say a HUGE thank you to Wayne and Kendall our dear SW friends. They have gone above and beyond for many, many months and today was no exception. What would we have done without them!

Our day began before the crack of dawn at 4am. Todd, Caed, and I drug ourselves out of bed......and if we had only known what this day was going to look like....we probably would have just crawled right back in.

We were graciously given 3 free passes for our trip to Omaha which is such a God-send! However, with that....means you have to fly stand-by. We knew that and were perfectly ok. It's a FREE flight. I don't care how long or how many flights we have to take....just as long as we get there. We took off at 6:30am from Dallas and got to St. Louis around 8:45. As we landed, the flight attendant came over the speaker and said, "we need the Hollingsworth family to get off the plane when we reach the gate" (probably wasn't exactly in those words.....much nicer). They said the next flight on to OMA was looking full, so we needed to wait until all the passengers boarded and then see if there were any extra seats available. There were only 2! So...in a matter of about 20 seconds.....we had to make some quick decisions. I grabbed Caed....all our carry on bags, and threw Todd my cell phone. (another important detail to this fun day!.....Todd realized as we were going through security he had forgotten his phone) I knew he would need one more than Caed and I. We were boarding a plane straight for Omaha.....once we got here, we would be fine. So I thought.......

Kendall would be in touch with Todd the rest of the day trying to get him to OMA as well. As Caed and I boarded back on the plane it was clear that this was a FULL flight and that we were the last 2 passengers. Now...put 2 and 2 together and you'll know just why I began to worry.
The flight attendant told me we would have to sit separately. I guess it was from the way things were already going. I got a little teary-eyed thinking my little 5 yr. old (with a medical condition) would have to sit with strangers and I wouldn't be able to see or help him. So, I knelt down and tried to explain to my little wide-eyed boy that these nice gentlemen would be his friends and take good care of him during the flight. (with tears in my eyes of course) One of them quickly stood up and very politely offered to give me his seat next to Caed. I definitely wanted to cry then.

Caed and I made it to Omaha, but the trouble just continued. You see...in St. Louis when we had seconds to decide who was going where with who.....I didn't even realize Todd had the credit and debit cards. So, when I went to get our car rental, I was told NO. Even though I had more than enough cash.....they still needed "the evil card!" So, there we were. No cell phone.....no credit or debit card.....just me and a 5 yr. old (exhausted) little boy who didn't understand where Daddy was and why Mommy was crying (again). The only thing I had was my laptop. I immediately got on Facebook b/c I knew that was best chance of contacting someone...anyone who might help me think! It worked. I was flooded with comments. Even found a friend who called my mom. Finally...after a few more hours and several times being paged over the airport loudspeaker, I just decided to go get a taxi and get Caed and I to the hospital (at least). We still didn't know about Todd or our luggage.

Immediately before I went to find a taxi, I received a fb message from my good friend Bethany in Edna. It was a simple but very heart felt prayer.....asking God to provide....and to protect us. I cried again knowing it would all be ok. As Caed and I made our way to the empty taxis outside, my heart began beating out of my chest. Without going into too much detail, let's just say....it was NOT a very safe situation I was placing myself or my child in. I literally prayed OUT LOUD as we got into the backseat. "Lord please protect us....in JESUS name!" It was the most surreal 15 minute drive I've ever experienced. I knew the way precisely to the Lied....and with every correct turn the driver made I thanked God. Then, as I handed him my money and quickly grabbed Caed and ran to the door....the tears began flowing once more. Tears of total fear......and then tears that I was finally HOME....safe! The Lied was our home for 3 months in the fall. Everything about it is familiar, the sights and smells....and I love them!!

Our dilemma...our stressful day was still not over. We needed to get a room, our luggage, and our Daddy! They did not have one available, so we went to our regular waiting spot (the transplant clinic lobby). I got back online (and was blessed beyond measure) by IM-ing some of my best friends (who were all together). Oh...I was literally laughing out loud. Lesli, Holly, Marnie....I needed you right at that moment. Thank you! Caed of course went straight to the playroom and found some good friends just his age. They played and played. Finally, 2 hrs. later they informed me our room was ready. THANK YOU Lied for taking cash!!!!! Wish more places did the same.

So, here I sit. My only source of communication, this crazy ole' computer....and facebook of all things. I was finally able to talk with Todd a few moments ago. He went ahead and bought a ticket on the next flight to Omaha (to ensure he gets here and doesn't have to sleep in the terminal....ha!) He should be arriving around 8pm. Now, we just pray our luggage is safe and sound.

I am exhausted and have the worst headache. This has definitely been one of those days I will not forget. I remember at one point while Caed and I were in the airport and I was feeling utterly helpless. I had NO clue what to do. I was quite honestly angry and began asking God,"why? why? why?.....why are you allowing this? what is your purpose? enough is enough." I knew the answer even as the thoughts crossed my mind. CHARACTER! How are you supposed to build character when everything is always easy in your life? When everything always goes just as planned. When there are no disappointments or setbacks? I believe He uses them. Not that He enjoys seeing us suffer or struggle or even cry. He doesn't. But what potentially can come from those moments I believe gives Him incredible joy. To see His children come upon a mountain (no matter how big or small it seems)....and tackle it....to see the "good" in it......to persevere....to "rise above".....and to trust that it is actually HIM who is carrying them....US!...over it anyway.

Thank you all SO MUCH for praying for us today. I absolutely felt it! How awesome is our God that He uses the prayers of others (no matter how far we are) to help us get through tough days.

Caed has a busy 2 days ahead of him. Tonight he will start a liquid diet (bowel prep for the scope). I will have to shut off his feeds at 5 am, then at 8 we head down to the treatment center for IV fluids and lab draws (lots of sticks....ouch). Then, our clinic appt. is at 10 where we talk to his drs. about how he's been doing and the plan for the future. (Please pray for more time off feeds!) Then, at 1:00 he'll have a scope (colonoscopy and upper endoscopy....going in through both ends). I know this is so necessary, but it's one of the tests that I dislike the most. Caed will be under complete anesthesia, which is so hard for me to watch. (going limp in my arms) He also comes out of it awful!!! Crying, yelling, growling, you name it....ha! Hopefully it won't be too bad and we can immediately come back up to the room and let him sleep it off. Then..... Wed. will just be a bone scan and small bowel series. Should be done by noon if the barium flows well. If he feels ok and the weather is decent, we might try to join one of our fellow short gut friends at the zoo. We will attempt to get back home (in one piece) on Thursday. Again flying stand-by. Please also pray for this. Caed has a t-ball game that night. Not a big deal if he misses.....but I sure hope we can be home for it.

Todd just called the room and he is finally ON THE PLANE!!!!!! Hallelujah! Should be here in another hour. Hopefully all the "drama" is over....................................

Easter story part 1

Easter story part 2

Play ball!

We officially made it through Caed's first t-ball game......in one piece. And no, Mommy didn't cry the entire time. ha! However, as I sat and watched him play and noticed how "normal" he looked, I realized no one there even knew Caed's story nor his current condition (other than his coach). That's actually a good thing. The fact that he has come SO FAR from one year ago today.....he is so strong....so brave....and one of the greatest joys in my life. I couldn't help but just thank God over and over tonight as I sat up in the bleachers. He had mercy on my son! And I believe the best is yet to come for Caed. Thank YOU ALL for your continued prayers for him. We do not take them for granted, and believe that it just might have been because of them that God chose to heal him. May the Lord bless you abundantly!!!!

The game was.....well......if you've ever watched a 5 yr. old t-ball game, then you know just how this one was too. Many players tried so hard to make a short cut home by skipping the first 2 bases. It was lots of fun! Caed did awesome. The coach put him at pitcher the first inning. Now, you wouldn't think the pitcher would have much responsibility in a T-BALL game, but Caed caught every hit.....and threw right to first like he was told. I even over heard a dad sitting nearby say...."Man, that pitcher is good!" ha! Made a mama proud. However, it's not Caed's athletic ability that caused me to be proud of him. I'm simply proud of all the obstacles he was able to overcome this past year. He is truly one amazing little boy! With one AWESOME God carrying him every step of the way!!!!


Pre-game pep talk

Baseball pics

Game over.....................Celina won!


One proud Mommy

Not a total loss

We have been SO excited getting ready for Caed's 1st t-ball game tonight. After practice Sat. we drove all over the metroplex desperately searching for SMALL orange baseball socks. Caed got him some new cleats and an orange bat. When we got home Todd noticed the bat is called "OMAHA"......ha! too funny. It rightly should as much time as he spent practicing there in Nebraska. Anyway, he is all set.....has everything he needs....and even has an awesome attitude to go along with it! Now, all we need is a game! Well....sadly our coach called us today saying it had been canceled due to some Kindergarten program up at school. ugghhh! We were so sad. When I told Caed, he just hung his head. But, I reminded him of all the other games on the schedule. (10 to be exact) Not sure honestly who's disappointed more.....Caed.....or his mommy and daddy? Oh! If the school ONLY KNEW what a let down this is to us, surely they would reschedule their program! ha!

However, today was not a total "loss." Caed pulled his 2nd tooth! He was so very excited, and it sure helped him get his mind off the game tonight.

**Game Update: just got another call from Caed's coach...looks like the game is back on for tomorrow night! yea!!!!!






Caleb helping his big sister with her schoolwork.............or vice versa, not sure.



Fun in the tub ~ These two stayed in the bathtub for several hours yesterday.......and the bottle of bubbles is now empty!



"This is the way the gentlemen ride............"




"This is the way the COWBOYS ride!!!!!!!........................"
(Grandaddy began singing this song to Caleb when he was barely old enough to sit up)

"I'm here for CAED!"

I got a call this afternoon from our home infusion company (the one I love so much.......not!). There was a new voice on the other end of the line, and I was a little annoyed having to re answer ALL the same questions we've been dealing with since Dec. After I had been talking for awhile, the woman said, "Calm down dear....I'M here for Caed. Whatever he needs.....I will make sure he gets!" I was in complete shock. This surely wasn't the same company that had continuously caused my blood pressure to rise with every phone call. She went on to say how she "worked MUCH differently than.......(our previous pharmacist). She told me how her philosophy is "the patient's needs come 1st!" I responded with...."well, thank you!....YOU are truly an answer to our prayers." She laughed and said she had NEVER heard that one before!

So.....on Tues. they will be delivering everything Caed needs....and this time we won't have to pay a dime!

Thank you Lord AGAIN how You prove Yourself Faithful!!!!!!

Therefore I tell you do not worry about your life, what you will eat or drink (tube feeds included); or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your Heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life? (Matthew 6:25-27)

**just a little "poop update" : Caed only had 2 stools yesterday! That is a 1st!!!!!! The past month or so, his frequency has dropped to only 3-5/day. HE IS MAKING TREMENDOUS PROGRESS!!!!!! Can't wait to tell NE! (earlier this fall he was averaging 10-12) Now, we just need to pray his upcoming scope and sm. bowel series say the same thing.

2 for 2

....well, almost.

First off, the regular old Arm & Hammer seems to be just fine. We switched from the $180 bottle(s) of liquid to the 62 cents of powder. Caed hasn't skipped a beat. Yea!!!!

Then, I just got off the phone with our insurance company. They have been nothing but top-rate from the get go. The man I talked to was in shock at supposedly what our home infusion company has been telling us. He read me off our policy concerning enteral nutrition and said there is NO reason they should be denying us feeding bags. He told me where to go to on the website, and then stopped and said, "No, ma'am, can you just give me your company's number and I will personally speak to them about this matter?" wow! Talk about service!! Of course the person I usually have to deal with was out of the office, but he left a very detailed message on her machine. So, hopefully all will be worked out, but I'm not holding my breath. The lady with our home infusion co. generally puts up quite a fight.....unfortunately. But, I am encouraged none the less.

My next prayer is that when we go to NE in a few weeks, the drs. lower his time on the pump to only at night....then we won't have to worry about this whole "bag issue!" :)

Thank you again for your prayers concerning these matters.

God is GOOD!