Am I waiting or am I in a freefall?

The entirety of this blog has been to count down the days until God heals me of an incurable disease, mixed in with tidbits of my life and family, and sometimes a little craziness. This is the 3rd night this week that I haven't been able to sleep at all. When I do sleep it is restles and full of vivid wild dreams. So may changes are happening this year. My sweet, brilliant Noah is getting married this summer and all I want to do is give Krystian the wedding of her dreams! Hope is probably going to a college science or psycology 2 to 3 week course at Tulane this summer. Senior year is right around the corner for her. Elijah is sailing through 3rd grade with flying colors. He loves to tell us how handome and smart and humble he is; that's my stinkerlicious for you!
I am just so ready to feel like myself again before I forget who that is. Either I am so sick I cannot function or I'm havinf crazy siide effects from my medicine that I can't decide if the side effects or the symptoms are worse. I miss laughing, dancing, baking, cooking, playing with my kids; Going on dates with my husband, dates with my kids, or having the best family outings. We can't even travel with the extra load of my TPN and all my meds, not to even mention that money for travel is non existant because it all goes to doctors and bills. I do have to say this, God has always provided for us. We have never had a lack of food, clothing, and essentials. God has been so good to us and I know He will see us through this as well.
Thank you for reading and praying for our family. I pray everyone who reads this is blessed abundantly and all of you needs are met by our Awesome God! I also pray that you will have true joy, true peace, and true love in your life!

Still sick, still believing with the #faithofachild

The IVIG treatments helped with my symptoms. I even had several days that I forgot I was sick, I felt so good. But the test results had no change so insurance is not going to approve any more treatments and I know I can't afford $20,000 a treatment. I do feel like this is just one more step to prove that man cannot do anything proof that my healing will be by God alone.  Until then I will wait. I have to say I am losing my patience. I do see so much more going on while I wait. I am having a blast helping with my sons upcoming wedding. Noah is doing awesome in biomedical engineering and planning his life with his new family. He is a youth pastor and making strides in making a huge difference in this area. It gives me so much hope and anticipation. God has brought back to the forefront of my mind all the ideas and plans He has given me and let me know they are going to be a reality. Expect to see big things God is doing through our family this year. Stick with me on here and I know you will see more than just one miracle!

Last IVIG treatment

I am sitting in oncology having my final treatment. Tomorrow I go to get a gastric empting scan to see if it did anything for my gastroparesis. I do know I have had more good day than I have had in a very long time. If they decide it is useful I will have to do this every 3 months. If it does not do any good then I am back at square one proving there is nothing doctors can do and then when God heals me there will be no doubt He gets all the glory! 

I hope you all have a wonderful Christmas and thank you for the prayers and the part you play in my miracle!

God is so good! #faithofachild

I posted just yesterday that I am at the end of what modern medicine can do for me other than manage my symptoms. To get to the root of the problem I need prayer for a miracle of creation because I was born missing certain neurons. I still covet your prayers and really want to get this prayer to trend on twitter with the hashtag #faithofachild. I originally started that hashtag for the faith of my baby boy Elijah. Last night I got a call from my 20 year old son that could only be a God thing. He overheard the idea of a machine that can create neurons. Once they get it working then they can go in and create neurons for different reasons. Getting pregnant with Noah saved my life because I was in a very bad place physically, emotionally, and spiritually. He went into this field of study to find a cure for my incurable disease. It just baffles me how God's timing works for that very same day that I asked for creation of neurons my Noah unintentionally walks in on a meeting where they are talking about doing that very same thing. Please share my prayer with the hashtag #faithofachild because this is the faith of all of my children. Luke 18:16 Jesus said," Let the little children come to me, and do not forbid them; for of such things is the Kingdom of God."