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Hope for Kyle

Kyle suffers from rare hereditary chronic pancreatitis (CP). CP is a continuing or relapsing inflammatory disease of the pancreas, that does not heal or improve, gets wor[...] read about page

Latest journal entry

Happy Transplant-aversary, Kyle!

Today marks 1 year for Kyle without a pancreas... and the other "optional" organs ;-) Time flies! Can you believe it? My heart says yes and then no. The amazement of how different life is now meets the weight of such a long road prior. Praise the Lord who has been so faithful and loving to our family. 

I woke up this morning to "On This Day" from Facebook showing me all post about the path walked that day. I'm sure the next few weeks ahead there will be many more Facebook updates reminding us of Kyle's journey to the TP-AIT.

It really humbles our hearts to think about alternate outcomes... God could have taken him home that day. He could have been debilitated. He could never even have had a chance a relieving this disease. Thank you God for your loving hand in our lives despite the outcome. Thank you for your healing hand. 

Ok. So. How is he doing?

Wonderful and completely manageable.

Kyle's body is thriving. He's taken all of the adjustments in stride and I am so proud of him. There have been so many adjustments he's had to make and he's taken the front seat and done a great job.

He hasn't seen the surgeon for a follow up yet. We know the Islet cells on his liver are working to produce insulin even though he is dependent on insulin injections. His A1C is around 8%. That's high and it is our goal to get it more controlled. The last year he's had to take 4+ injections a day. This month he decided to get an insulin pump and also a CGM (Continuous Glucose Monitor). He's had some episodes with severe lows and  some moderate highs, so the hope is that the pump and CGM will make the diabetes a little less demanding and also keep him steady. I am amazed by the medical technology! The CGM is the size of my thumb and it wirelessly reads his blood sugar levels every 5 minutes. It even sends me a report to my phone and alarms me if his sugar drops below a safe level. Isn't that so cool? He's adjusting to wearing them but he's excited about what freedom they can offer. Neither of us consider the insulin dependence to be a failed outcome. Kyle says that not having hospitalizations and an almost complete decrease in pain was worth it alone. The rest is just a manageable part of life.

He doesn't have much pain now and we don't think what he still has is post effects of the pancreas itself. Mostly we think it is tough digestion. He still has a few down days with severe abdominal pressure. But as you can imagine not having a number of your digestive organs, that the pressure of indigestion can have a pretty painful effect occasionally. He has been successful with life on digestive enzymes. They seem to be working well for nutrient absorption and breaking down food. He's put back on some weight and he looks healthy not over or under weight. This should be his new normal. It's kind of an on going balancing act between what to eat, when to eat, and how much to eat, but all manageable.

We're happy to not have frequent hospitalizations. No more extensively bedridden days. No more agony. No more planning life around the next attack. No more hopelessness... Now I get a partner in life and the kids get a daddy that can do normal things like: play outside, go to the beach, go to dinner, hangout with friends, spend a day together with out pain. We are no longer so unpredictable. We are able to plan out life past the pancreas.

We are thankful for a wise and powerful God who sent us a trial that we can point too in so many ways and see His caring and loving hand. This has strengthened us and our faith. We are grateful for the trial and not just for a positive outcome.

Charles Spurgeon said it best:

"It would be a very sharp and trying experience for me to think, that I have an affliction which God never sent me, that the bitter cup was never filled by His hand, that my trials were never measured out by him, nor sent to me by his arrangement of their weight and quantity. "

The fact that we are in great and loving hands makes this a happy truth. We know it was designed for us by our good and loving Father for our good. 

Romans 8:28-37

And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose. For those whom He foreknew, He also predestined to become conformed to the image of His Son, so that He would be the firstborn among many brethren; and these whom He predestined, He also called; and these whom He called, He also justified; and these whom He justified, He also glorified.

What then shall we say to these things? If God is for us, who is against us? He who did not spare His own Son, but delivered Him over for us all, how will He not also with Him freely give us all things? Who will bring a charge against God’s elect? God is the one who justifies; who is the one who condemns? Christ Jesus is He who died, yes, rather who was raised, who is at the right hand of God, who also intercedes for us. Who will separate us from the love of Christ? Will tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? Just as it is written,“For Your sake we are being put to death all day long; We were considered as sheep to be slaughtered.”But in all these things we overwhelmingly conquer through Him who loved us. 

Thank you all so very much for your prayers and support as we walked this path.