I KNOW YOU'RE JONESING FOR AN UPDATE - here it is!

Hello blog readers. About time for an Amy and Colby update, don't you think? Sorry it's been a while since I've been in touch, but hey, life happens.

Colby's last day of school was May 25^th. Should have been May 26^th, but he had an ortho surgeon appt on the 26^th at Cincy Children's on the 26^th. I'm sure it didn't bother Colby one single bit to get out of school a day early. Believe it or not, this child will be in high school next year! Did you read me right, high school! Oh how time flies. Anyways, his ortho appt went fine. Took longer to get his x-rays done than to see the surgeon. Colby's spinal rod fusion is holding up great says Dr. Sturm. The 2 rods and 9 screws he has in his back are exactly where they should be, yay!

We had a cookout on Memorial Day. Just because we could! I loved it! Had 9 people over. I hope everyone had a good time. I know I did. Dad was in charge of frying fish (blue gill and crappie, the good stuff) and hush puppies. I put my friend Jeff on the grill doing burgers and chicken. I did side dishes and dessert. My friend Joni made her famous, delicious mac and cheese. I absolutely loved hosting for a change. Thinking of having a July 4^th/Colby's birthday combo cookout maybe. Who knows?! Maybe we'll have both a July 4^th cookout and a cookout for kid's bday. This house has changed our lives so much for the better. How wonderful that I can keep Colby at home with all his equipment and comforts AND we can be social and have people over. So yes, we still absolutely love this house, love this neighborhood and are loving life for the most part.

So let's talk nursing. One of the most stressful, worrisome topics of our lives. I've had to make some really hard decisions about nursing. Basically I told the nursing agency, either you work here full time (or very close) or you don't work here. No more chopped up scheduling with this nurse working these 2 days, this nurse working 2 shifts per week, etc. We need consistency in scheduling and continuity of care for Colby. I was telling my dad, you won't believe this, but every shift in June is scheduled and should be covered. It's a miracle! Providing no one gets sick, quits, etc. Yep, you guessed it. One nurse had vacation scheduled and the nursing agency forgot when doing the schedule. But we got her shifts covered. Then BOOM, you ain't gonna believe this shit, one of Colby's new nurses was diagnosed with mono. Yep, freakin' mono. Unbelievable - I just don't even know what to say. She got cleared from her doctor to return to work, but I said nope, and gave it another week. She started here last Tuesday. She has great skills and is very personable, so I hope she works out here. I had her wear a mask when in Colby's room, and she was very good about wearing gloves, washing and sanitizing her hands. We'll see I suppose. Also looking for a nurse to work Mon-Fri, 8a to 4p, who can work for both nursing agencies and go to school with Colby. Nursing BS never ends. It really shouldn't be this dang complicated, but for some reason it is. Makes Mama sad.

Colby had Cincy appts this past Wed and Thurs. We left 10:30am Wed and didn't get home until 8pm Thurs. We were all exhausted! Wed Colby had some testing, an easy day really. EKG and Echo, then down to Pulmonary so they could test his vent settings. Spent the night at a local hotel. Being the spacehead that I am, forgot very important pieces to Colby's IPV machine at home. And the nightmare began! Darrell and Nancy had to come here to the house, get the hoses and adapter we needed. They drove up to Carrollton. My poor daddy drove down to Carrollton and met them to get the stuff so we would have it. I absolutely hate that happened! But what's done is done. Colby's first appt on Thurs was at 11:30. We got ready, packed up the van and checked out of the hotel at 10:30. Wow, I thought, we'll actually get to a Cincy appt a few minutes early. Think again! There was a car on fire on the exit we needed. Firetrucks and police cars everywhere, the exit completely closed of course. Ok then, let's reroute through downtown Cincinnati. We did get to his appt on time, which was with the Comprehensive Neuromuscular Clinic. Basically, we stay put in a room, and all the doctors come to us. It's genius! We saw PT, Nutrition, Rehab, Pulmonary, Neurology, Genetics and Cardiology. Very, very busy day. My brain was starting to fry around 2pm. The next hiccup we had was my dad thought he had lost/misplaced the only set of keys we had with us. No van keys, no house keys, no keys. I was trying to talk to doctors, help Dad look for keys and retrace his steps. A complete nightmare for about an hour and a half. He had security guards helping him look in the cafeteria, going to lost and found, etc. We finally broke down and called Pop-a-Lock. Then voila, I found the keys in the backpack. Jesus Lord, Mary, Joseph and drunk Noah, thank God we found those keys! Ok, so back to Colby. Overall he got all good reports from the doctors. Just a few tweaks to his vent settings. Colby needs a left elbow brace/immobilizer to help with contracture. Things like that. For the most part, the doctors had nothing but good things to say about how Colby looked, sounded, his overall health and such. What a relief! Next Cincy appt at the end of July for a DEXA scan and sleep study. Not looking forward to that at all. But, we gotta do what we gotta do. Bleh.

So that's what's up. Wanting to get focused and do some fun stuff with Colby. Go bowling, the movies. We're going on a mini-vaca this month to my friend's lake house. Can't wait! As much as we love this house, a change of scenery, especially on a lake with their brand new boat, will be really nice. I should go ahead and start packing now! More again soon, I hope. Toodles for now.