Megan update

For some reason I have the hardest time trying to write updates lately. Most of you that know me, know that it is very unlike me to not have words, but whatever. Anyways, we talked at length with Megan's doctor yesterday. They have determined that Megan needs to have another biopsy done on her small bowels. She had one done in 2007 and they found lots of inflammation and irritable spots. It could be getting worse which is why she is having so much pain lately tolerating her feeds and her medicine. Every morning for a while now, when Megan gets her morning medicine and evening medicine (she takes meds 4 times a day but the morning and evening are when she gets the most meds) she complains about her tummy hurting and she looks very yucky. Something is going on in there, so we know this needs to be done again, the problem with doing this is they will have to put Megan to sleep again and for a much longer time then last time. This brings back VERY painful memories from May. Her doctor knows how dangerous this was for her last time. He is going to talk to her Mito doc today to determine on if it is safe for Megan to even be put to sleep and even more extra precautions they should take. The outcome of this surgery would determine what we would do next. I can't go into detail right now but basically this will determine if Megan will have some MAJOR changes in the way she eats and her current medical condition, and it is not good. They are afraid that Megan's current J-TUBE may not be working for her anymore. It might be causing more damage than good basically. They can't really determine that though until they go in and look. However, we know something is going on because Megan is complaining more and more about eating through her tube and her belly hurting. I guess the good news is that when they go in and do the surgery if they determine the j-tube is not working we can decide then if we want to take the next step and they can do it while she is under. The hopes of the experimental medicine working was taking away last week. Megan had a reaction that was very scary for us but could have been much worse had it not been caught in time, PRAISE GOD! So, that medicine was completely stopped. We really had hopes that it would somehow work for her since everything has failed.

I really don't know what else to say at this point. We are very scared. We are trying not to be but it is hard. The nights of nightmares, Megan in pain, and just laying there thinking about everything and really wanting to do what God wants us to do but feeling so confused and terrified is exhausting. Her doctor is going to call me back today and we will see what our next step is and when it will be done. I will let you know if we decide on anything today. Thank you for praying. Thank you all so much for your amazing emails, cards and phone calls. They are beyond encouraging! God is so good to us and we know that we are being carried right now. Oh, just to update you on Megan's Garden, it is doing amazing! I can't believe how beautiful it looks. I will post some new pics soon so you can all see how amazing it looks. Thank you and God Bless!

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JR