Surprises

Thank you all for your prayers for my appointment at Hopkins a few weeks ago. I truly felt them as God enabled me to communicate with my doctor and discuss next steps, even in the midst of great physical weakness. The brief update is that he was encouraged by my weight gain and scheduled a SmartPill test for May 7^th which will measure motility and collect other data related to GI function. He also ordered x-rays and bloodwork for various auto-immune diseases. Although I left the appointment still hesitant as to whether to continue with this doctor, it did seem reasonable to move ahead with the next test and then re-evaluate after hearing where my doctor would like to go after that. So I began trying harder to eat various foods and press through the pain while continuing on my feeding tube…that is until last weekend.

While taking a walk with one of my brothers, my j-tube accidentally ripped out. It was definitely a shock at first, and I will spare you the more unpleasant details, but I didn’t experience any additional pain beyond what I already was facing. A few hours later I found myself in the Hopkins ER where a doctor was able to fix my G-tube. She explained that I would have to come back on Monday to have the procedure done to reinsert the J-tube (which is what is used for all my formula/nutrition).

I was actually somewhat excited to be without my pump for the first time in eight months and wondered what God might have in store for me. I asked the doctor to give me a week to attempt to eat and drink enough by mouth without my feeding tube. Well, a week later I can say that God has truly sustained me through some of the biggest waves yet. Because of my difficulty swallowing, I have been relying on receiving all my fluids through my tube. I now had to get down at least three cups of water a day along with 2000 calories and all by mouth. God has enabled me to meet my calorie minimum and to meet or get close to my fluid minimum each day, despite my saying I couldn’t take another sip or swallow another bite. He has been so faithful. It has been amazing to see His enablement, yet it is difficult to know whether to continue pressing forward at this level or not, as my body is finding it incredibly difficult to process and tolerate the foods I have been eating.

Tomorrow afternoon I will be meeting with my doctor at 2:30 to ask questions and learn more regarding the procedure scheduled for this coming Tuesday at 12:30 to reinsert the J-tube. I would love to be able to continue fighting without the feeding tube, but I am not sure what is best.  I would not be honest if I did not say that the severity and complexity of the symptoms I have been experiencing have been incapacitating and quite scary. I don’t know the way ahead but I know my God sees perfectly.

I wish I had time to say more, but I need to move on to prepare for the appointment tomorrow. I cannot tell you all how MUCH it has meant to hear of your continual and faithful prayers. They have carried me through the most desperate of moments and continue to carry me still. What a merciful and faithful and good God we have. I don’t know what is best, but He truly does. I would love to be healed. I would love to be able to start drinking normally, digesting food, functioning as a whole person and not be on a feeding tube, but God knows so much better than I do what is best for my life. It’s not easy, but I want to say “not my will but Yours be done.”

I love you all so much and cannot wait to share with you all how God works in glorious ways in the days to come.  Thank you for lifting up my arms (literally and spiritually) again and again. He knows what He is up to! And it’s most likely something far beyond anything I would expect. His ways are higher than mine. And that is something I can take comfort in, even when I can’t see the end of the tunnel. He does. My physical body may fail and my earthly sustenance may be removed, but God will be “my Portion forever.”

Nevertheless, I am continually with You;
You hold my right hand. You guide me with your counsel,
and afterward You will receive me to glory.
Whom have I in heaven but You?
And there is nothing on earth that I desire besides You.
My flesh and my heart may fail,

but God is the strength of my heart and my portion forever. – Psalm 73:23-26

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Ways to Pray:

• That the Lord would specifically give wisdom and guidance to the doctor, me, and my parents tomorrow and direct our conversation. 
• That He might lead me to a nutritionist who can help work with me more closely.
• For the power to persevere in eating and drinking and especially to be able to begin swallowing liquids and fight through the fear of choking (I’ve been relying mostly on homemade popsicles.
• For His glory to be displayed in my inability and weakness. He can choose to heal or to sustain me in my sickness, but He is the only reason I am still here today!
• For my eyes to be fixed on Him, not on the waves.