Recent Updates from FB

Saturday, February, 9, 2013
 
Hi everyone,

I'm sorry it's taken so long for me to update. It's just been so difficult to get through the moments these days. Thank you for your prayers for my appointment at Hopkins last Wednesday. God gave me the strength I needed to talk and go through that time.

My doctor believes that my x-ray from my last day in the hospital shows that my j-peg tube is not in the correct position but he is not concerned even though it is further up than the intended and ideal location. This is difficult for me because moving the tube further down could possibly decrease some of my symptoms and make it more functional or it might not make much of a difference. At the moment, I am not sure what to do, so I am praying about it and trying to move forward.

My antibiotics will finish later this coming week, and he said I could have my PICC line removed at that point.

The biggest challenge I am presently facing is finding a formula that my body can tolerate and fighting through how sick it is making me. Over the past few weeks I have been experimenting with homemade formulas with the help of a nutritionist outside of Hopkins. I am so grateful for her knowledge, ideas, and the ways she is trying to help me, but neither one of us know what will really work in a j-peg when it comes to the functional side of things. It has been so good to be off of the canned formulas that are full of all the things that I am either allergic or intolerant to and from which I haven't been able to absorb much nutrients. But the "experimental formulas" just aren't working for me either. They consist of lots of oil and sugar (in the form of either corn-free dextrose, agave, or honey) along with amino acids, gelatin, and various supplements. None of us are food scientists, and we haven't been able to find a way to get the oils emulsified well and are continually running into difficulty with the tube clogging either due to supplements clumping or a change in temperature from a cool room or just going to the car.

I've been so blessed to not experience much nausea over the past few years (amazing) but now it is almost a constant companion, and I am hitting a wall as to where to go next. None of the options look pleasant - trying a canned formula again that makes me sick, returning to TPN, or coming up with another type of homemade formula that won't clog the line and pray I can tolerate it...not sure where to go and am so weary of trying to figure it out.

I have other updates on new doctors and things that have happened over the past few weeks, but I will have to save them for another time.

I'm sure this was much more information than most of you were looking for, but I'm not too good at simplifying things. :) I would be most grateful if you could pray that God would lead us to a next step and make a way for something I could begin to tolerate. It is so difficult to press on right now.

So grateful for each of you! And I am so grateful that I have a God Who is much BIGGER than all of this! My faith is small, and my hope is flickering, but He can sustain it.

Thank you for praying.

Saturday, February 8, 2013
 
"I know that You can do all things, and that no purpose of Yours can be thwarted." - Job 42:2

And those who passed by derided Him, wagging their heads and saying, "You who would destroy the temple and rebuild it in three days, save yourself! If you are the Son of God, come down from the cross." So also the chief priests, with the scribes and elders, mocked Him, saying, "He saved others; he cannot save himself. He is the King of Israel; let him come down now from the cross, and we will believe in him. He trusts in God; let God deliver him now, if he desires him. For he said, "I am the Son of God." And the robbers who were crucified with Him also reviled Him in the same way. - Matthew 27:39-44

He had all power, yet He surrendered it. For us. He stayed upon that cross. He knew the glory that would come from the most horrific suffering ever known...welcoming us into His glory. He stayed. For me. For you.

I know He could rescue me tonight from this suffering. But He hasn't done so yet. I don't know why that is, but I do know that NO purpose of His "can be thwarted," and if He brought beauty and glory and life for millions out of the death of His own Son then I can trust Him to bring beauty out of my pain and questions and heartache.
 
Wednesday, February 7, 2013
 
Dear friends,
I'm on my way to a 1pm follow-up appointment with my Hopkins doctor right now. In need of much strength and grace for discussing where I'm at right now and if there's anything to be done about the current placement of my tube. Thanks so much and I'm sorry for the lack of updates. Been very sick lately but God is faithfully keeping me. Grateful for you all.

"The Lord is my strength and my song. He has become my salvation." - Exodus 15:2