Friday, March 16, 2012

Update: “For after all, the best thing one can do when it is raining is let it rain.”
― Henry Wadsworth Longfellow
It is currently raining at our house. Oh, not outside, but on our parade inside. We are no longer headed to the beach on Monday. Instead, Eli and I are headed back to Memphis on Sunday after church for an appointment Monday morning with the doc and neurosurgeon after they told me tha...t the accumulation of fluid in his private parts and lower belly could not be related to his shunt and I ONCE AGAIN told them he was not right and it had to be. ONCE AGAIN, they said they've never seen that before, and ONCE AGAIN, I had to say well forget what you've seen and look at what you see! Ok, I didn't really say that, but we did have to be persistent, and for the second time we have something that they've "never seen." (The first being the hole in the patch used to seal the first brain surgery). So, we met with St. Jude in HSV today and they agreed with me that it just wasn't right and they wanted to do another ultrasound of his privates and also this time of his belly to see the end of the shunt. Since his first ultrasound Saturday the amount of fluid had increased quite a bit. So, they sent those pics to the docs in Memphis and he wants to see Eli Monday morning and I'm expecting them to want to do some type of repair surgery this coming week. So, the beach trip is postponed indefinitely, but we hope to recover and stabalize from this in time to still make it before chemo. We had a fun week at home, fairly boring week at home. Eli is struggling greatly with the eating, I'm hoping maybe this is also connected to the fluid build up, maybe putting pressure on his stomach making him feel sick or something, but I hope to address that problem this week as well, and I'm afraid I'm not going to like the answer. So, all of it, every day, every moment is so heavy sometimes. The kids are super disappointed and we have to remind them that it is not Eli's fault that we can't go right now. Also, please pray for our buddy Ryan. He was on a little break before his last chemo treatment and has spiked a fever. He is also being sent back to Memphis right away, I think. I was fishing around in some folders on the old computer and came across some old ones of Eli. I think he is about 2.5yo here. We do a lot of sprinklers in the yard in the summer.

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