Fri. 5/23 - upate

1 step forward...2 steps back. Seems to be Caed's theme. Today was not a very good day. It was especially frustrating to me after seeing him yesterday. However, I know it could always be worse. He just didn't seem to feel well today. He threw up several times (not necessarily unusual), but I guess I just had high expectations of things continuing from last night. He also ran some low grade fever most of the day. Just enough to make him feel lousy. Finally, around 9:00 pm, he all of a sudden starting acting normal. It just amazes us when this happens. Didn't last too long, and then he got sick again. I guess if we're still on the "good day, bad day" schedule, tomorrow looks promising. ha! I hate all this for him. Several times today he would be crying telling me, "I don't like throwing up." Can you imagine? Throwing up sometimes 10 or more times a day for 80+ days in a row? I thought being pregnant with morning sickness was bad. That's nothing compared to what he has and continues to go through. Please continue to simply pray relief for him!

I don't think I reported much on Caed's dr. appt. yesterday. They took him off one of his antibiotics, and also told me they wanted to keep his G-tube in for awhile longer. Even though we're not using it, they basically want it to stay for "insurance" purposes. (just in case we end up having to put in the J-tube later on) That way they can go in through this hole and not have to do surgery again. We have mixed feeling about that. We completely understand the logic, but have also been told that 20% of kids with G-tubes can develop stomach irritation. I'm sure Caed is in that 20%!! He hasn't much followed the rules thus far. Also, one of the other antibiotics he's on sometimes causes nausea and cramping. Not a good side effect on a child who already suffers greatly from both of those! So...we are interested in seeing how he would do without the G-tube in and also off this particular med. (however, it's supposed to be helping with the acid reflux!) auugghhh! Very frustrating.

I know this is all in God's timing though. Like we've said many times before, He is sure testing our patience and perseverance. They told us from the very beginning that it would take lots of time to fully heal. However, I don't think the drs. or us realized it would be to this degree! For whatever reasons...God isn't allowing a "quick fix." It's hard going through it day by day, but I DO thank Him for it. Never in my life thus far have I gone through something this difficult. He is teaching me things that I would have never gotten had we not had this experience. We will never be the same....................Thank You God that You make ALL things beautiful in Your time!