The Biggest Loser

Caed has consistently been gaining 1/2 lb. every week for the past month. Weight gain is always a plus in short gut world.....but 2 lbs. in 1 month?.....I was afraid if we kept this up, Caed might wind up on his favorite tv show.

We have been in contact with NE, and they aren't too sure this is a "good thing." Well, good in that he is gaining (intestines absorbing). But, concerned in that it's too much - too soon. They sent us a new formula (recipe) in which the k/cals are reduced. We will try that a few weeks and see if there is a change.

Caed's labs this month were good, except he was a little on the dry side. Caed drinks his ORS SO WELL (almost 2 liters/day)!! So, it couldn't be that. However, his stools are straight liquid again, so we are assuming it's coming from that. They also are more concerned with this, so they might switch his formula entirely to EleCare (which many of our gut friends are on). Junior NeoCate can be hard on the gut (or hard to absorb) with some kids. So, it looks like we'll be experimenting several things this month.


This morning, Todd drove to Houston to meet our NZ friend, Hamish, to take him to the Dallas/Texan football game. Many of you have followed Aria's story....and know what an amazing little girl she is! She didn't have 1, but 2 multi-organ transplants, and by God's grace is doing SO well. We are thrilled that Hamish is getting to take this once in a lifetime trip down to Houston. This is his dream....to see them on their home field. We want to thank our parents, Carol and Cordell, Tina and Bridgette, and Kendall for helping us do this for Hamish. I'm certain it will be one of the highlights for him of their time here in the US.

(Go Cowboys!!!) ;)

And the rehab continues...

We have officially weaned Caed off the formula he has been on these past 2 years. The infant version is broken down and much easier for sbs patients to absorb. However, at our last NE visit, the only concern the docs had was the lack of weight gain. So, after a couple of months weaning....we are now 100% on the Jr. version. The kcal increase has been evident. Caed has gained a whole pound in the last 2 weeks. The only problem we are seeing is his output. His stools are straight liquid again (3x/daily). NE said this is common and sometime when there is a change in formula, it can take awhile for the body to adjust. (or he has some bacterial overgrowth again.) I'm really leaning on the formula being the issue. His labs continue to look good, so we are grateful for that.

It was just a reminder to me that we continue to travel this LONG road of intestinal rehab. Todd and I have had our sights set on Jan (our next NE visit) for the possibility of his tube being removed. Right now, I'm not so sure. (which is ok) Caed continues to do SO WELL!!! It'll happen when it's supposed to. It's hard to see Caed outwardly and not expect that same "normalcy" on the inside. When the doctors first told us 2 1/2 years ago that this was just going to take lots of TIME.....I never in my wildest dreams thought it would be this long! (...and it's still not over). Caed has a chronic condition. It will never go away. But....that g-tube will. Someday. And for me, that will be the indication rehab is finally over.

Please specifically pray that Caed's body will begin absorbing and adjusting to this change.

Here it goes....

I honestly can't believe I'm writing this post. The Lord began laying it on my heart about 9 months ago, and I have continually pushed the thought away or told him "You're crazy!" But, just like God works, when He wants you to do something....He won't let it go. I have had many dreams about it, think about it many times throughout the course of my day, and have finally run out of excuses. So, here it goes......

I have officially begun writing a BOOK! Oh my....did I really just admit that? The thought alone scares me to my core. And at the same time, I have such peace and excitement that is just waiting to be released. For me....making this official "announcement" is my way of finally letting go. I have held on and pushed this "absurd thought" far away into the deep dark corners of my heart for long enough.

Now, for the big confession. I have absolutely NO idea the first thing involved in trying to write a book! I have told you before how much I loathe the whole writing-process-thing we learned in school. I'm fairly certain I consistently break all the rules when it comes to writing. I have no idea how am I going to do this....when I will possibly find the time to do it.....nor what the end result will look like. However, once again, I have a peace that is unexplainable.

Just asking for prayer as I embark on this new adventure, and for you to hold me accountable.

(The Lord gave me the title to the book this past spring when a good friend of mine was battling breast cancer. I will save that....but have posted this picture I took as a little hint.)

Love you ALL! I thank many of you and your perpetual "nagging" over the course of the last 2 years. I believe the Lord has used it to speak to me and get me to take this giant leap of faith.

Our stone

Today is Caed's 7th birthday. As usual it's been a day filled with much joy and celebration, but also great reflection.

I received a comment on my Facebook page today that completely sums up what has been on my heart. (thank you Greg!)

Life is hard. Period. We will all have moments in our lives of peace and joy and prosperity. When all seems right in the world. Then, out of nowhere, those wilderness experiences blindside us and our "perfect" world takes a U-turn. When it rains, it pours, right? It's those times when we question God. Where are You? Why have You allowed this? If You were really a loving God, then______! But, God being God, He doesn't leave us in that place forever. He IS loving and faithful, and He leads us into the valleys for a specific appointed purpose. Just for US! Yes, it's painful. Yes, we will initially fight it with every fiber of our being. But, if we can only trust and hold fast to HIM.....He will in His prefect timing, lead us back to the mountain top stronger than before. I believe our lives are like a roller coaster. Up and down....up and down...over and over and over. Sometimes we may have many years of favor and blessing before the darkness hits again, or sometimes we may feel we are having to live in the valley for FAR TOO LONG and plead with Him for mercy and deliverance.

Right now....I feel that my family (specifically the health of Caed) is high upon the mountain. We suffered for what seemed like an eternity, and now we are seeing the light. The glorious light of a normal family of 5.....enjoying life! I obviously cannot foresee the future, and have NO idea what lies ahead for each one of us. But, I DO know that we are not "out of the woods." Hard times will definitely strike again in some unknown way. Instead of living in fear, we must cling to His past faithfulness!

I am reminded of the story in Joshua where the nation of Israel crossed the Jordan. The Lord told the people to gather 12 stones from the riverbed and set them at the place where they would stay. The reason? So that when future generations saw those stones and asked what they meant, they could retell the story of His amazing faithfulness so many years before and stand as a memorial to the people of Israel forever!

We have a stone. It's roughly 4 ft. tall and weighs approx. 45 lbs. It has a contagious laugh and is FULL of life. Although hooked to a machine, it is sleeping soundly right now under our very own roof. It is likely dreaming of football, baseball, being the star drummer in a band, or fighting off evil with his super hero friends. It is a reminder to us of a God who still performs miracles. Of a God who never let us go as we faced the most frightening days and months we had ever experienced. This God lavished us in an ocean of MERCY. He held every tear we ever cried. And answered our pleas for healing. He didn't have to. He would be perfectly just and holy and loving and faithful and merciful had we buried Caed in 2008. Yet we undeservingly were spared.

To this day I still carry a photograph (of my stone) in my Bible as a reminder of this very thing.



When times get hard, when things happen that we don't understand, or when we plea with Him for deliverance.......all we have to do is look no further than our stone. It is a reminder to Todd and I of a God who IS faithful! Who IS in control! Who loves us enough to not only hear our prayers but answer them! And who will carry us ever so tightly all the days of our life....whether high upon the mountain, in the deepest cavern, or simply wandering the desert.

And surely I am with you always, to the very end of the age. (Matt. 28:20)

Caed,
We love you more than words could ever describe! You are our joy! And we count it an awesome privilege to be your parents. May the Lord continue His favor on your life and may you grow to know Him as your Savior and Lord. We pray God will use you, your infectious personality, and the gifts He's given you to honor HIM!!! You have a story to tell................so do it with boldness and the way only "The Caed-Man" can!!!

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.