What a crummy few days...It has been raining here since Thursday. I am so sick of rain!!!!

We had a very quiet weekend. We hardly left the house. We basically just lounged around and were lazybones as Alex would say! We didn't even make it to church yesterday because Buggy didn't wake up until 9:15!

Over the weekend Alex started having some trouble with his J-tube. It really started last week with him complaining of it being sore. Typically this means that his skin is irritated and we can "fix" the problem with some topical medications. It didn't look bad but we tried that anyway. Well over the weekend it got significant​ly worse. He is doubling over in pain 4-5 times a day and asking to go lie down. Then it gets better and he is back to playing normally. We are really not sure what is going on. I have two thoughts...​one is he is brewing anbother infection around his tube which can be painful. The second is that his tube is rubbing inside his intestine causing an ulcer. We had this happen with Alex's first g-tube and it kind of reminds me of that. But these are just guesses! i am waiting to hear from GI about what to do. I am kind of at a loss. There is nothing to "see". So I don't know how we are going to determine what the problem is. But I guess that is the doctors problem not mine!

Labs look pretty good. His urine is still showing some dehydration​, but overall labs look better then last week. On the bright side, his liver numbers are down a little so that is encouraging.​

Please continue to keep Weatherly and her family in your prayers as they cope with the loss of her mother.

I will update as I know more.
Ali

I ask for special prayers today...

My best friend's mother has been called home to Heaven. Please pray for Weatherly and her family during this hard time. I am heartbroken that I can't get to NC to be there for the services. Weatherly and her whole family have been like a second family to me. I lived with them for several summers during college and Weatherly's Mom even hosted my wedding shower.
Weath, Stephanie, Drew- I love you guys like my own siblings. Please let me know if there is anything I can do. You are in my heart and my prayers.
Ali

GOD IS GOOD!!!!!

We replaced large amounts of fluids both Tuesday and Wednesday night and my sweet baby is back! And I got a call from the GI nurse and dietician this morning and we are going to start giving him more fluids on a regular basis. I really feel this is in Alex's best interest. I am so thankful the doctors and nurses are doing their best to care for Alex and are working diligently to tweak our "system" to meet his needs.

Ali