FULL DAY FOR US

Colby has had his IPV treatment and is getting tucked into bed. Cupcake is hanging out in front of the fireplace, gnawing away at a chew toy. Hey, at least it's not the wood trim. I'm poking around Facebook and not watching the president's speech. Just not feeling it. I'll catch the highlights on tomorrow morning's news. 

Colby had school today. Yes, he's still in school even though it's winter and cold/flu season. I'm sure many people think I'm completely cra-cra for sending him to school right now. They may be right. Supposedly the flu peaks in February. I may up and one day decide to put him on home/hospital for a few weeks. Just depends. Once he was on the bus, I headed to my second job. Yep, more proof I'm completely nuts. I've been working at a law office since before Thanksgiving. I don't know what I was thinking taking on another part time job. Oh wait, now I remember, I need the money! But it got to be too much. Too much driving back and forth. Too much time away from home not getting stuff done. So today was my last day there. It's bittersweet. I liked the people I worked with and the job. I certainly like the extra money. But Colby comes first, and there are times I just need to be at home to make phone calls, schedule appointments, get Colby to PT/OT, clean, etc. I'm hoping the law office calls me to work there occasionally. Or I really hope I win the lottery.

I got home from work about 7 minutes before the bus got here. The nurse and I got Colby out of his wheelchair and into his bed. I stretched him out and put on his hand splints. Then I headed to the gym. Yes, don't laugh, I go work out sometimes. Then as soon as I got back, the evening nurse and I took Colby up to Great Clips for a hair cut. He needed it – his hair was looking funky! Then we gave him his Tuesday night shower. He was doing his eyegaze after that. His thing now is YouTube. He'll bring up the internet on eyegaze and go straight to YouTube. Then the craziness begins. He'll open YouTube over and over again, so there are multiple Spongebob, Sesame Street and Veggie Tales running at once. It's enough to make me want to jam rusty ice picks in my ears. So today was a very full day for Colby. We just got him tucked in and he's already about to fall asleep. Most nights he stays up until around 11. I'm not far behind. I need some QT time with the bunny, a shower, then I'm heading to bed. Tomorrow Colby has school and I have my first job. Yep, really need to win the lottery. Good night.

WHEELCHAIR WOES FIXED? Hopefully

Waking up at 4:15 is not how I like to roll. Getting up at 5am is definitely not how Colby likes to roll, either. But we did it. Did an up and back trip to Cincinnati Childrens today. Fingers crossed, I think we have solved the wheelchair head piece dilemma. Colby tried a Savant head piece, and we were all pleased with the fit and support it offers Colby. So NuMotion will order the Savant and return the Stealth. Same old blah-blah. Papers have to be signed by a doctor. Paperwork has to be submitted to insurance for approval. I'm not sure how long it will be before we get the new head piece. The guy from NuMotion said well, you can pay for it out of pocket and you'll get it much faster. I gave him the look of death and said yeah, right. Price is roughly $550. Think we'll just wait for insurance or Medicaid approval, thank you very much.

Then we went aaaaaaaaall the way to the opposite end of the hospital so Colby could get labs drawn. I told that bimbo to call for the Vascular Access Team, but noooooo, she said she could access Colby, no problem. And do you think she accessed him? No. She got one chance. After she couldn't do it, I was furious. But I had on my big girl panties and calmly asked her to page VAT to do the blood work. VAT brings an ultrasound machine so it's much easier to get access on someone like Colby. Long story longer, the blood work is done. The neurologist also ordered tests that require a urine sample. We tried to collect it while at the hospital today, but that was a no go. So I'll have to get an order from the neurologist and find somewhere to take a sample for testing this week. I get to have all the fun, huh?

I have big news. Really big, super big news. I'm getting another cell phone. That's right, the time has come for me to put my iPhone 4 out of commission. A friend of mine gave me that phone over 3 years ago. It's been real and it's been fun, but that phone has to go. I don't know whether to laugh or cry at how very slow it runs. I can't download apps on it. Often it tells me I have no more storage. I could go on and on about the issues of having a phone that old. Well, we'll see. I'm very technology stupid. I'll probably get intimidated and chicken out in the next couple days. But as of right now, I'm doing it!

Time for The Good Doctor. Must go. More updating soon.

WHEELCHAIR WOES

The good news is Colby has his new power wheelchair. We went to Cincinnati Childrens in August and got it all lined out. There are many, many things to consider when ordering a wheelchair for someone as medically complex as Colby. First he was going to get the newer model wheelchair. Then I was told the tray that slides onto this wheelchair would be permanent. Nope, won't work. I have to be able to take off the tray to get Colby in the van. So we were able to get the same style of wheelchair Colby had before with new seating, arms, head piece, etc. Colby's chair was delivered December 28^th, which is amazing! We've never gotten a wheelchair that quickly before. It has to go through insurance, which always denies it. Then it goes to Medicaid for approval. Once it's approved, then it has to be ordered and built. So getting the wheelchair within 4 months really is incredible. The bad news is we've had some problems with it, especially the head piece. Of all the parts and pieces Colby needs to work properly on that chair, it's the head piece that's THE most important. We (two wheelchair dudes, PT, and whoever else wanted to take a crack at it) have worked hours on that damn thing. I'm ready to roll that chair in the Ohio and watch it sink. My opinion is the head piece was fault from the start, which is hard to believe because both his old and new head pieces are made by Stealth. Not sure how we had such good luck with the one on his old chair and such bad luck on the one on his current chair. Actually we've been using the old head piece on his new chair because the new head piece is that crappy. Lovely.

So that will be appointment #1 tomorrow. We'll leave here around 7:30 tomorrow and go to the Perlman Center to get this wheelchair looked at and hopefully fixed. After that, Colby's appointment #2 will be getting labs drawn. Unfortunately they need to be drawn peripherally, meaning they will have to stick him to get the blood. They aren't able to draw the blood from his port because they need to do a PT and PTT to look at his clotting factors. You can't do this test with blood from a port because there is heparin sitting in his port, and that will mess up the clotting factor values. I hope this peripheral draw goes as easily as the one he had done at Cincy in December. I had the lab technician call the Vascular Access Team, who brought an ultrasound machine to find the best spot to access Colby. One stick, which is fantastic. Hoping for the same tomorrow. Then we can head home. Really hoping to be back on the road and home before afternoon traffic starts getting crazy.

I don't know if it's proper or not to ask for prayers for a wheelchair, but I am. Really hoping the Savant or the HeadPod that Colby tries tomorrow is the solution to his head piece issues. I'm not giving up until we have this resolved. Can't have sweet boy's head not properly supported. We'll see.