Thur. 6/19 - update

I wasn't able to post last night due to the severe storms here in Lubbock. We had a fairly lengthy power outage. With 3 kids (Reagan, Bergan, & Caed) and a baby, we decided to camp out in the basement with our candles and flashlights "just in case." We knew it would be easier if we were all already down there and prepared. The kids of course had a blast. Although I will say it was quite interesting administering all Caed's meds and hooking him up by flashlight. I just kept praying, "Lord, please help me to get all this right!" We finally moved back upstairs around 10:30 - 11. Caed's night was eventful. He woke up with diarrhea every hour. He has struggled with this from the beginning, and the drs. told us it might last 1-3 years. However, he's never had it this bad! The good thing is that he didn't complain too much about the pain. I have upped his G-tube feedings to 7 cc. It always seems to go so slow in the beginning...like we're barely inching up. I am going to try to get it to 10 cc by the time we see the dr. next Thurs. He does better if he can stay on a number for several days. The dr. said we could increase it 1 cc. every night until we get to 10. However, the diarrhea seems to be bad until his body gets used to it. Seems SO weird that we can tell a difference in 1 cc. It's just basically nothing! (5cc=1 tsp.) So, he's getting a little over 1 tsp. into his tummy each hour throughout the night. Again, just like the hospital, our goal is around 60-70cc.

Today was a very special day for Caed! Some very, very dear friends of our family sent some money and said to use it for fun, a need, whatever! We thought hard about it. Caed is pretty limited at what he can do for "fun." Each day he gets to watch Reagan swim, eat whatever she wants, etc... The one thing he has really enjoyed throughout all this is riding in the little red jeep. (however, this jeep is about 12+ yrs. old...and you are reminded of it everytime you ride it!) So, my parents decided to use part of the money and get another "vehicle" to leave here at Nana & Grandaddy's house. We took Caed to ToysRUs yesterday to pick one out. He chose the red Corvette, of course. He had lots of fun last night riding around with the other kids. THANK YOU SO MUCH! You put the biggest smile on this little boy's face. He told my mom, "I'm so glad I got this!!"

Racing his cousin Logan in his F-150

This was the little tent the kids made when the
electricity went out the 1st time (before we moved
to basement)