Lets do the good news first... We were granted a partial scholarship from the United Mitochondrial Disease Foundation to help pay for Indy 2008!! Thank you UMDF!!!
Now for the bad... I find myself down these last couple of days and dreading an update. Ana's pain has subsided for now, but her jejunostomy tube is leaking. Leaking between the skin and the tube. Last dealings I had with leaking of this kind is when her stomach failed altogether. If Ana's jejunum fails, that is the end of j-tube feeds. The jejunum absorbs all of the nutrients from the foods we eat and when it goes... that's it for the GI tract. If the leaking increases to the point she stops gaining weight and can't keep blood sugars up and ketones down, our last and only option is TPN (Total Parenteral Nutrition). TPN is not good... many, many, many risks involved, especially for a mito kid. If you want to read about TPN, I added a link under "Ana's Links". I am trying to stay positive and I am asking for prayers from everyone. Pray with us that Ana's GI tract does not totally shut down. Pray for healing and for comfort. On the other hand, Ana seems to be hungry all of the time. She has ate more in the past few weeks than she has in the last year.... only downside is that there is no bile in her stomach and she often gets sick from it. We check for stomach bile regularly as we know it is important for keeping down infection when eating and necessary for breaking down food. I pray that we will not have to restrict her eating. We have been in contact with her GI in Boston and they would like her to follow up for further testing up north. Another trip?? Pray about it. If God has a plan for Ana to get further treatment in Boston, then He will make a way for us to get her there! I never imagined this disease would take over so fast. I feel unstressed and I depend on the Lord for strength and guidance, but the Lord has revealed things to me that tell me differently. I find myself carrying Ana to my bed every night. I want her close all of the time. I find myself not able to sleep... it is 2AM as I type this. I feel sort of numb... if you will... like maybe some sort of denial... maybe not denial... it's like just when things seem to be getting better or are at least stable, she does a downward spiral... I am not ready for TPN... I am not ready for an appendicostomy... I am not ready...
Dear God, Give me strength... the strength to accept whatever you have planned for Ana's life... Give me peace...the peace in knowing that you are taking care of her now... Give me the ability... the ability to handle everything you need me to do for her... Give me comfort... comfort as I watch your plan for her life unfold... Help me... help me to learn... to learn everything you want me to learn from all of this... Help others... help others see Your works through her life... Amen
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