Monday, March 30, 2015

NORMAL STUFF AROUND HERE

Looks as if I've been a little lacking in the blogging department. Guess I'll remedy that now. Get ready for an earth-shattering blog update.

Just kidding. Not much around here to report really. Colby is doing his thing - school 4 days a week, swimming once a week and visits with his high school friends 2 days a week. Little stinker stays pretty busy. I was looking at my calendar for the rest of the year and realized there were no upcoming appointments for Colby at Cincinnati Children's. I knew that couldn't be right! So I called the Concierge Department there and they helped me schedule follow-up appointments. Scheduled 8 appointments as a matter of fact: orthopaedics, ENT, pulmonary, cardiology, neurology, wound care, endocrinology and ophthalmology. These are spread out in June, July and October. Just thankful we aren't scheduling pre-op and surgery dates. This time last year we were starting to prepare for Colby's spinal fusion surgery. So very thankful we have no Colby surgery to deal with, prepare for and schedule. Totally nerve wracking.

I've been watching a lot of basketball lately. A LOT of basketball. I do love the madness of March. Tried to get Colby to watch some games with me. Yeah, that went over like a lead balloon. He did, however, watch the last 20 minutes of Hoosiers with me the other day. I'll take it. Close enough to watching basketball with Mama.

Proud Mama moment – my friend Jimmy came over for supper the other night. Colby was sitting up in his wheelchair and his eye gaze was hooked up. I told Colby he needed to tell Jimmy hi, and he did! Not only that, after he said hi he said, “My name is Colby” and then hit the button to say, “this is my talker. I use it to communicate by using my eyes.” It was priceless. Colby was actually using his eye gaze to say something appropriate. I'm still smiling about it. Then yesterday my dad came over and Colby said on eye gaze, “Let's play Uno.” So of course Grandpa agreed to play. And Grandpa showed no mercy. Beat Colby 2 out of 3 games. Bet you it might be a while before Colby asks Grandpa to play Uno again!

I won't bore you with the details, but last week was very difficult trying to get Colby's supplies ordered and other various phone calls. To the point I was in tears by the end of the day on Wednesday. Usually I refuse to let these assholes get to me, but I had just had enough. Enough with the errors. Enough with the delays. Enough with somebody else needing something else from me. Thank God nursing is going okay right now or seriously, I don't think I could handle it. Something has to give. It has to get better/easier, something. And soon.

Not much going on with the house. The contractor was out of town last week. This week supposed to meet with an interior designer to see his ideas for a floor plan. I, and several others, worked our fannies off on a grant application. Applied for a grant to help with handicap accessible home modifications, specifically to reinforce the ceiling, purchase and install an overhead motorized lift system for Colby to be transferred from his bed to his wheelchair or shower chair easily. It's due April 1st but I delivered that sucker last Friday. I was so glad to get it done and out of here. We won't hear anything until mid-June. That will drive me crazy cuckoo, but not much I can do about it I suppose. Praying to the grant gods we get this grant. A ceiling lift system would make all of our lives easier and would make transferring Colby much safer.

Okay, I guess that's it. My eyeballs are sticking together from my dry contacts and I keep making typos. Time to watch the rest of Castle and go to bed. More soon. Promise it won't be so long until my next blog.

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