Wednesday, December 17, 2014

ON VACA SORT OF, STILL MUCH CHRISTMAS-ING TO DO

Well, I did it, survived the last few hellish days. Worked Friday, Saturday and Sunday. Monday we took Colby to Cincy. Up at 4:45 AM for that day. Super fun times. Tuesday and today I also worked. See, told you they were sucky. Today Colby's nurse had a dr appt and didn't get here until 11:00, so Colby didn't go to school today. I didn't get to work until almost noon, meaning I didn't get home from work until 7:00. Ick. That just wasn't fun at all. But now I'm "on vacation" I suppose for a week. Don't have to go back to work until Christmas Eve. Woot woot.

Colby's appointments at Cincy went well. We met a new ENT doctor because the doctor who put in Colby's trach moved. I took recommendations from other SMA moms, and sure enough, they were right. This new ENT dr is very nice and thorough it seems. Since Colby just had a bronchoscopy done back in October, she says we can wait a year until the next one. ENT does a scope yearly just to check out the trach site, so I'm glad she said that scope was sufficient. Next appointment was GI. This is a new specialty for Colby. His g-tube has been leaking occasionally so I decided we better have it checked out. The doctor believes the changes in Colby's vent settings could be causing more pressure in his tummy. So we're going to start venting him at night (use a Farrell bag) and see if that helps. Both of the doctors complimented me on how great Colby's trach and g-tube sites look. So kudos to me for being such a Hitler when it comes to site care and kudos to the nurses for taking such good care of Colby. However, Colby does have this place on his ear. It gets better, gets worse. Gets better but never heals completely, then gets worse. You've heard me talk about this issue before. Well, it's on my last damn nerve. We've tried every special pillow and every cream and ointment everyone has recommended. Waiting for a call back from Cincy Dermatology. Colby has an endocrinology appt in January, and I'm really hoping he can see the skin peeps the same day. Just what we need, another "ology" to see at Cincy. Oh well, has to be done, so suck it up Buttercup and get it done.

Tree is up. Lights are working. Ornaments are in place. Nativity scene is set out. I'm a happy mama. Would love to get some outside lights up this weekend, but if it doesn't happen, it doesn't happen. Tomorrow I'm getting Colby on the school bus. Getting out my list, checking it twice, and away to shopping I go. Barf. I hate shopping. But I'm determined not to come home until I'm done, because there's no way I'm going to the malls this weekend. You couldn't pay me to do it. My dad offered to come over  and help the nurse get Colby off the bus so I don't have to leave whatever store I'm wandering around aimlessly.

Just took my Chex mix out of the oven. Made that for Colby's bus drivers and bus monitors. Going to give it to them tomorrow. If I can find the containers I bought to put it in, that is. Organization has not been my strong suit lately. Too much crap, too little space. Getting a house cannot come soon enough!

Quick eye gaze stories before Harry Potter time with Colby. Saturday night, after the nurse and I got those ding-dang lights on the tree, we sat Colby up in his chair. I hooked up the eye gaze. I showed Colby how to say "I want to help" and "I don't want to help" on eye gaze. Then I asked him, Colby, do you want to help me put the ornaments on the tree this year? He said "I don't." That's it, that's all he had to say about it, "I don't." Then he started doing something else on his eye gaze. Guess he told me, huh? Then after a few minutes he said his famous, "I would like something to eat." Really, Colby, you eat every 3 hours, you couldn't possibly be truly hungry. So I gave him a candy stick to suck on, he chose lemon-lime. His nurse came over to suction him and he looked at his eye gaze and said "messy." Lol. Yes, Colby, your candy stick is very messy. Today his high school buddies came to see him. On his eye gaze he said "loves snack, TV, Spongebob." Did he hit the nail on the head or what? He was totally telling the boys about himself. I wish I had been here to see it. Damn job and need for a paycheck!

Okay, it's story time with Colby. Then I have to redo my Christmas list. It has lines through it, stars by names. I have no idea why I put stars by peoples' names. Geez, Amy, get a grip. But I have to get some focus and a plan for shopping tomorrow. Not coming home until it's done. Lord help me. Hope the mall gods smile down on me tomorrow. More soon.

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