Two and a half years.....

Sure wish my readers consisted of short gut parents only today. I have SUCH amazing news, and would love to give you all the exciting 'intestinal details.' However....I realize that most of you reading this don't have poop journals for your 7 yr. old kids, nor do you take pictures and text them to your husband. haha!! Therefore I will spare you the details. Just know we had an extraordinary praise today. One that hasn't been seen for 2 1/2 YEARS! And one we thought we would never see....this side of Short Gut Life!

Questions...

Why do You allow these young children to suffer and even die? And why do You choose to mercifully spare others?

These questions along with about 100 more flooded my soul this past week. We took our youth group back to Student Life in Orange Beach, AL. It was incredible!!! I honestly don't have adequate words to describe how AWESOME this camp is! However, one afternoon I was catching up on my email, etc....and came across some very grim news concerning 2 of our UNMC "bowel friends." I have been following both of their blogs for almost 2 years, and met both girls and their beautiful mommies while in Omaha. Currently they are in a desperate need for miracles. Things are looking so bad. It absolutely breaks my heart to read about them and what their families are going through.

That particular night at worship I felt so heavy. The presence of God had fallen hard on that building, and I cried out to Him. Caed (and Reagan) had both fallen asleep in the chairs completely oblivious to everything going on in the room. I fell to my knees....held Caed in my arms and sobbed my eyes out. WHY GOD???? Why did you choose to have mercy on me? Why did You allow Caed to live...and thrive? I am SO undeserving and I'm sorry for being unfaithful to You. There are SO many who do not make it. SO many mommies and daddies who have to bury their babies. WHY???

I still do not fully know the answers to these burning questions. I think they will always haunt me somehow. And yet for the first time since Caed's illness (and recovery), I became SO overwhelmed at His mercy. To REALLY get it! In the last 2 years, I have been surrounded by other moms who have walked a similar road with their child and those ornery intestines. And yet....one after the other, are going through MUCH more pain and hurt than I could ever dream. Caed is a miracle. A 100% living, breathing, running, drum-playing MIRACLE!!!! I believe that with all my heart. And yet this same heart hurts so badly for my dear friends. Why God? Why are You allowing all this to happen?

It will cut you to the core. Once you get it. It's the reality of the brevity of life. To go through a trauma so big....so real....so awful and ugly. It shows us we are not invincible. Not bulletproof. We are not guaranteed tomorrow...even though we somehow think God owes it to us. I hate it! It hurts and literally make me sick to my stomach to think about. But.....I know it also is a gift. To not take life and each day He gives us for granted. To learn to LIVE! To LAUGH! To LOVE! To glorify Him and ENJOY Him forever.........and be overwhelmed by our Father God!

I know HE is GOOD.....and HIS plans are PERFECT.

7500 miles

...is a rough estimation between Texas and New Zealand. Why on earth is that information relevant? Because it is proof yet again of the wonderful Providence of God.


Meet the MacDonald family. Hamish and Anita....and their daughter Aria (4) and son Asher (2). I have mentioned them before in my blog and have asked for prayer for Aria on numerous occasions. So many of you now follow her story and faithfully lift this family up in prayer.

Now to continue with the story that first took place over a year ago....

I sat down one day to catch up on some email and opened one up from a "stranger." This is actually not all that unusual these days. Ever since Caed's illness, I have "met" so many wonderful families all across the US. We share a bond that is chronically ill children. However, this email was different some how. It was from a woman on the other side of the globe with a very ill little girl who came across Caed's blog from googling "bowel" and "University of Nebraska Medical Center." (wow!) The emails which were exchanged those first few days were full of lots of tears (between the both of us). There was an instant connection....and one that only the God of this universe could put in motion. For almost a year, we corresponded via computer (email and Facebook). And finally....we were able to meet face to face this past week in Omaha. There was a very odd feeling when I first saw her. Like we were old friends who just hadn't seen each other in a long time. haha We were able to spend several days together and ask one another all kinds of questions and of course laugh at the extremities of our accents. You can guess who had the most beautiful one! (hint....not the hick from Texas) However, Todd and I are proud that of all the restaurants we could have taken her....we chose DQ! ha (can you get any more redneck?)




The kids also had lots of fun together. Asher and Caleb hit it off (only 2 months apart), and Caed was his usual "entertaining" self, which Asher LOVED! We told them we can rent Caed out if they ever needed it. ;)

Although, one thing was always missing during our times together.....Asher's beautiful big sister, Aria.


Getting to finally see her sweet face in person was such a joy! We have prayed SO HARD for Aria particularly this year, and to see her and SEE God's hand was truly amazing. In a nut shell....the MacDonald family left their home in NZ, and came to UNMC to save their daughter's life. A multi-organ transplant was their only hope. However, Aria has not only had 1, but now 2 M/O transplants! She is a true miracle. She is so strong and brave and an inspiration to thousands of people all over the world who have the privilege of praying for her. Aria still has a long way to go, but is making progress daily. THANK YOU GOD!!!!

One thing is for sure. This was not a chance meeting between the Hollingsworth and MacDonald families. It wasn't by accident or coincidence. It was only by the hand of God who holds the whole world in His hands. I absolutely HATE the reasons why we are connected. If I could change those, I would. And yet....I'm thankful that yet again God shows me how He is always bringing beauty from the ashes, in different forms and different ways.

We love you Anita and Hamish. You guys are in our thoughts and PRAYERS daily!!!!! You are both truly amazing people, and we are privileged to now call you friends.

Results

Today started early, and as usual we were the first to arrive down in radiology. The team seemed very optimistic as the barium moved its way through fairly quickly. However....I warned them (or should I say 'reminded' them of every other sbs Caed has ever had. He likes to take his time....get to know all the rad. staff and see them through to the end of the day. ;)) I did however pray that this time would be different. After hour #3....and the frustrated looks on their faces, I knew it wouldn't. Caed was a trooper though. Total sbs time today = 6.5 hrs

We finally were allowed a little over an hour to put a halt on the xrays, and go to our clinic appointment. Caed was SO excited to see his nurses and doctors. He loves them! In a nut shell....the visit was very positive. They said if they were just looking at his labs (or at least the ones that had come back), they would think they were those of a "normal" child. Which anyone who has been around Caed would probably 100% agree with. The plan of action now is to change his current formula to one that is higher in calories. (Neocate Junior) We will stay at the same rate and dosage. We will also cut one medication, and watch to see if there are any effects. If not...we will then slowly try to wean the Imodium. Their only "concern" is his weight. He hasn't gained like they wanted him to. Hopefully the new (stronger) formula will help. We will come back in 6 months.....assess everything, and then, MAYBE then...we can remove the tube!

We returned back down to radiology after our appointment and had a couple more x rays. Finally, they felt the barium had reached the finish line (his colon)! We asked the docs about the length of time for Caed's sbs, and they said they are not concerned with it. They said the horrid "s-word!" (stricture) But, said if he had one, that wouldn't necessarily be a bad thing right now. (slows everything down allowing for more absorption time) He doesn't have one however......thank you Jesus, but said by it taking so long...that is actually a good thing. OK...we'll take it! I guess with Caed's bowel length everyone (including radiologist) always assume it will go quick. Yet another sign of God's hand!

We weren't able to see Dr. M today (he was in a transplant), but saw another dr. we knew. This guy was great....no complaints whatsoever. BUT...he made some simple comments that really struck something in me.

"We just shake our heads when we look at Caed. There is no real medical answer as to how he is doing SO WELL considering the amount of bowel he has left. We would love to ask you guys what you have been doing, so we can tell other IRP patients. He just isn't the 'norm.'"

I sat there quietly listening, but later wished I would have stood up and shouted "I KNOW the answer!!!! I know WHY he is doing so well. It is only by the grace and mercy of our God."

I haven't been able to get his words out of my head. Those of us around Caed take his normalcy for granted. We forget what an incredible MIRACLE he is! And I think I am as guilty as anyone for giving the credit to his great doctors in Lubbock and the IRP here at UNMC. I guess it just humbles me once again when I hear the medical professionals say that #1...they didn't expect him to survive the volvulus, and #2....how they don't understand how he dodged the inevitable multi-organ transplant and is doing SO WELL today (only 2 years later).

Thank you Lord for this trip to NE. Thank you for the positive results from the doctors and tests. But, especially for gently reminding me of YOUR ABSOLUTE HEALING POWER! YOU....oh God....are our Deliverer.

Nebraska Summer

(Caed's new summer do......he goes by the name of "Hawk" now) :)



Well, this is a first for us...spending time in NE during the hot summer. We were blown away by the humidity. Definitely didn't expect that. We decided to combine a little family "vacation" with Caed's dr. appts. this time, since Reagan has been begging us to let her come back. And the last time Caleb was here, he was only 6 mo. old.

The testing will start this week. Caed has been doing WONDERFUL (ever since we got back on all feeds and meds in March)! However, currently he is only on 400ml (120/hr) for 6 nights. We allow him to have "free Fridays" where he can go to bed tube free! I think in the intestinal rehab world, that is virtually nothing. So, we are very curious to hear what Dr. M has to say. We are, however expecting Caed to stay on tube feeds through the summer at least (due to the hot summers in Texas and the high probability of dehydration). But....will possibly be tube FREE by Sept!

So far, we have had a WONDERFUL time here in NE. So good, in fact...it's deserving of its very own post! Many of you have prayed for Aria and her parents Anita & Hamish from New Zealand. Well, yesterday after a very long year, we finally met FACE to FACE!! I will write about it in detail in a few days.....

Thanks for your prayers. So far, so good. Tomorrow Caed will have what he grudgingly likes to call the "all day tummy pictures." It's a small bowel series, and should last 1-2 hours. For Caed, we generally are the first radiology patient of the day and then are the last to leave (6-7 hr. x ray). It's not painful at all (just a little discomfort for Caed as the barium makes its way through), but just VERY LONG and boring for a nearly 7 yr. old boy. Please just pray specifically for this test. It always is very nerve racking for Todd and I. Outwardly Caed is a 100% normal little boy. This test always reminds us otherwise. Just pray for no dilated loops in the bowel or any other areas that look "suspicious."

Will post tomorrow after we speak with the drs.

Pre-Teen camp

Reagan attended her very 1st church camp this past week (Pre-Teen Camp at Mt. Lebanon), and I went along as one of the sponsors. She loved it!!! But....boy are we wiped out!

Thank you Grammy for coming and staying here for a week. We know Caed and Caleb were quite a handful....but we appreciate and love you SO VERY MUCH for helping us out!!

1st year.....down!

Typically you find Mommy's crying the 1st day of Kindergarten. Me, on the other hand, never shed a tear that day. However, today....the last day.....I sobbed like a baby walking out of that school! It had absolutely nothing to do with Caed....just me feeling like I was losing a friend.



Mrs. Smith. Where do I even begin? The Lord brought us together 3 yrs. ago...as we both had something the other one needed. I needed some extra income and she needed someone to watch her 3 month old baby girl. A friendship quickly developed and I knew right away she was special. We had only lived in Celina a few months and I didn't have many friends at the time. She was literally a God-send!! She walked through Caed's ordeal with us....supporting him the entire time. Last year, when Todd and I decided to send the kids to public school, I was scared to death for Caed. He hadn't been out of my sight (medically) for over a year. To say sending him away for 7 hrs. a day was hard, would be quite the understatement. However, when I found out he would be in Anna's class.....my heart was instantly eased. She knew Caed.....PRE-sickness! She knew everything he had been through, and I was certain she really cared for him and would "look out" for him. And she did...

I began watching her 2 kids a few days a week the last month of school. What fun to see how that tiny little baby had grown and to get to know her "new" brother (which is Caleb's age). Probably the main reason for my tears today was because Mrs. Smith is moving. We are SO excited for her family....and yet grieve our loss.

I could not have asked for a better 1st teacher for Caed. Not only was she a dear friend, but an excellent teacher. Caed was as disinterested in anything school-related as you could get, but now he has a love for learning and an excitement that he certainly did not have a yr. ago.

Thank you Anna! I know our friendship is not over.....just taking on a different feel. I look forward to hearing all the exciting things that will take place in your new home, and watch those "babies" grow up!!! Thank you for EVERYTHING!



Reagan also did a great job this year in 3rd!! Her year was little bit different. Since she had been home schooled from Kinder to 2nd....this was a BIG transition for her! Everyone else in her class had sat in desks, carried backpacks, ate lunch in a cafeteria, walked the hallways, or raised their hand in class. They knew "the system." It was like an 8 yr. old experiencing the first day of Kindergarten. She was excited, yet scared to death. It took a few months to work through all of the 'labeling' she endured, but she came through it like a pro! She thrived.....made all A's and lots of friends...LOVED her teachers....and we are so thankful for God's protection and care over her this past school year.




The whole reason for sending my kids to school this past year was 100% for me. Physically and emotionally I had reached my limit after getting off the ride of my life. I'm no psychiatrist, but I'm fairly convinced I was suffering from some Post Traumatic Stress as well. I desperately needed some time to heal....time to rest.....and time to re-bond with the baby I lost. And that's exactly what we got! This past school year was wonderful for Caleb and I, and I am so grateful to the Lord for providing it. And all the while, knowing that my other 2 'babies' were in safe hands.

Thank you Lord yet again for Your steadfast Faithfulness in the Hollingsworth Home!