NO SLEEP = TIME FOR BLOGGING

One word describes us lately: cra-cra. It's absolutely freakin' crazy around here lately. Or should I say, crazier than normal. Here's why:

Lots going on with Colby. He's on spring break this week. We didn't really plan anything special. He had speech therapy yesterday and got to try a newer/faster version of eye gaze. Tuesday we did our normal swimming day. We're trying to arrange for his former babysitter to come over for a visit. We also have planned to go pick out a new fish and get a haircut this week. Just a little something each day to keep him busy/happy. He's scheduled for his zoledronic acid infusion next week. He does these 2x a year to help with bone density issues. He'll be missing school at least 2 days next week for pre-infusion labs, the actual infusion, and a day of rest. Not good timing on my part. I wasn't aware he was due for the infusion or I would've scheduled it over spring break. I'm sure it doesn't hurt Colby's feelings one bit to miss some extra school. Plus the week after that we have 2 visits to Cincinnati Childrens, Endocrinology and then a couple days later go up for a routine MLB and bronch. Oh, and while we're at it, his new AFO's are done so we need to schedule a fitting for those. AND, somehow Byrum Healthcare started sending the wrong amount of feeding supplies (too much Vivonex and not enough Neocate) so I've been on the phone trying to get that worked out. Furthermore, the company that supplies Colby's briefs no longer has a contract with Ky Medicaid, so I've been finding another supplier for that. Never a dull moment with that sweet boy's needs.

Colby's sleep pattern continues to be horrible. Worse, as a matter of fact. Today, for example, we've been up since 3AM-ish. I've called Cincy and talked to Pulmonary, Cardiology and Endocrinology. Of course nobody can give me definite answers as to what's going on with Colby until they see him, run some tests, etc. I'm convinced it's more of a puberty/anxiety/sleep problem more than it is a cardiac problem. Because he's fine during the day. Sleepy, of course, trying to take naps during the day. But he's able to sit up in his chair, go to school, etc, no heart rate issues at all. As a matter of fact, his heart rate is way better when he's wide awake than when he's supposed to be sleeping! Uggggh! We had a sleep study scheduled for him at Cincy, but the earliest appointment we could get is the end of July. Boogers! We're on the cancellation list, so maybe we'll get lucky and get up there sooner to get that testing done. I'm going to call Pulmonary today and see if they will prescribe something to help Colby sleep. Just a little somethin-somethin to try for a few days so we can at least get caught up on some sleep.

The other cra-cra part of life as we know it right now is getting ready for our open house. It's a mere 10 days away and there are so many little things I would like to get done between now and then! We've all been working our fannies off trying to get the house prettied up for visitors. Dad and I have worked on the yard – mowing, weed eating and edging, putting a circle of stones around the tree in the front yard. Charlie, world's most fantastic carpenter, made sure the new garage doors got installed, along with several other to-do items we asked him to help us get done. Nancy finished up the stepping stones and pea gravel outside while Darrell and I painted the garage and columns on the back deck. Nancy and I have also been cleaning out flower beds and putting down mulch. Saturday my friend Christina and her daughters are coming over to help me get the basement back in order and cleaned a little. How did it get so darn junky so darn fast?! My friends Jimmy and Joni came and helped me finish up hanging pics on the walls. My mom is on the schedule to come over Monday so we can start doing some serious cleaning. Not to brag, but this house is going to look sparkly clean, wonderful, beautiful, super cute to show everyone at open house! If it doesn't look fabulous, it's certainly not because of lack of effort!

It's 7:45. Time to get our day going. Colby gets his meds at 8:00. I need a shower. Nurse here at 9:00. He'll start getting Colby up while I run to the bank and store. I think later today we're painting my hand-me-down patio furniture. Not sure, it might be too cold. If that's the case, there's plenty to do inside like unpack a few last remaining boxes upstairs, make a grocery list for open house, paint a shelf for Colby's room and the general everyday stuff of dishes, laundry, hang out with kid. And I think my dad is coming over for a visit, too. Hope the next time I blog I can report good sleep for Colby and me. Because honestly, this mama is pooped out. Something has to give soon with Colby's sleep or I'll be getting in naps at the funny farm.