Saturday, April 25, 2015

HERE IT IS - A MUCH NEEDED UPDATE

What's the easiest way to update you on what we've been up to? I have no idea. I'll just start typing and if this blog seems choppy or all over the place, sorry. That's fitting, since that's how my brain usually works anyway.

Today Colby had a visit from pet therapy, a sweet little doggie named Luna. Oh, to watch Colby with animals is such a joy. I know pets - besides hermit crabs and fish - take time, money and patience that honestly I probably don't have. But there's no way I'm not getting my sweet boy a pet when we move. I've seen other SMA kiddos that have pets, and there's such a bond and companionship. Cat or dog, don't know yet. Colby seems to love both. We'll have a fenced yard at the house, so a dog is a possibility. But of course cats are less maintenance. Guess I'll let Colby decide when we move.

And when will we be moving? Don't know, stop asking. Our apartment lease isn't up until October 31, so technically we have 6 months to get the renovations done. However, I'm Jonesing to GET OUT of this apartment. I'm keeping my fingers crossed we can bust out of here sometime over the summer. Would love to be moved before Colby starts school in August. Only time will tell. Windows have been delivered. Not installed, but delivered. The carpenter is finishing up the stairs, both going upstairs and going down to the basement. The new roof was supposed to be put on today, but do to the shitty rain, it has been rescheduled for May 9. We've had several meetings with an interior designer and the contractor, figuring out the best configuration for Colby's suite, closets, having consistent flow in the house to get Colby's wheelchair through easily, etc. The interior designer is amazing! He has listened to what we need, thrown in a couple of his own ideas, and has developed a beautiful floor plan for the house. We'll meet with the contractor one more time (hopefully) to make sure the recent floor plan changes are a go. Then maybe we can get down to some serious work.

Colby has been crying at school. Why? I'm not sure, but I don't think anything is really wrong. My guess is he's bored or just doesn't want to do anything related to schoolwork. He cries at different times of the day, in different classes, doing different activities. So yeah, I think he's “going through a phase” as they say. A pre-teen, I don't want to do what you want me to do phase. Get over it, kid. You're going to school. End of discussion. I told him the boy who cried wolf story. I told him, what happens one day when something really is wrong. You're uncomfortable or have a headache, etc. Then if you start crying nobody will believe you. He wasn't impressed with my story. And then of course I encouraged him to TELL US on his eye gaze why he was crying at school. He wasn't impressed with that idea either. Somebody pass the vodka, please.

Colby and house. House and Colby. That's my life right now, and I love it! I did buy a push mower a couple weeks ago. That was exciting. My dad mowed the front grass at the house, then a few days later I tackled the back. I haven't mowed grass in a decade or so, but I managed. Next purchase, weed eater. And a gas can. I have absolutely no yard work related items. Left them behind when Colby and I moved out. What the heck would I do with that stuff in an apartment? Time to start over and get back in the outside work groove.

Here are some recent pics:

We have windows!















Last Saturday was perfect weather, so we hit the zoo. Thank goodness somebody gave us passes. When did the zoo become so dang expensive?


Colby and sweet Luna during pet therapy. She's a camera ham, Colby not so much.


Wednesday, April 8, 2015

EASTER AND SPRING BREAK AND PICS AND STUFF

We had a fabulous Easter weekend. Colby's dad and stepmom came over Saturday morning to color eggs with him. We headed out to Grandma and Grandpa Kenny's at 2:30ish. Started unpacking the van and getting us settled for the weekend. Hadn't been there 15 minutes and I realized I forgot something. I could have crapped my britches. I NEVER forget Colby's important stuff. Never. That's why I have a list for the love of corn! I remembered to bring the humidifier for Colby's vent, yet somehow it didn't have a water chamber attached to it, meaning it was completely useless the way it was. Uuuugh. Poor Mom and Kenny had to drive over to the apartment and get the chamber, and I stayed at their house with Colby. I'm still kicking myself in the pants. After that fiasco was over, we made a bunny cake and hung out the rest of the night. Their house is not exactly accessibility friendly (steps to get inside, sunken living room, narrow hallways) but we managed. Barely, but we managed. I think all of us need IcyHot patches, massages and muscle relaxers after moving Colby's big butt around for two days.

Sunday morning we were up, ready and at Easter church service 10 miles from Mom and Kenny's at 10:30! We rock! Even got there a few minutes early. My stepbrother and his family were there, too. Church was “crowded” this year, 22 of us. That's a huge attendance for their church. Of course 8 people were our family, but that's beside the point. After church was Easter lunch. Ham, potato salad, side dishes, bunny cake. Colby got to spend some time with his cousins. Grandpa started teaching us to play Rummikub. Colby thought better of it and was napping within 10 minutes of us starting to play. He was zonked. Heart rate was in the low 60's and he had one eye half open. A sure sign he was sleeping peacefully. Okay then, we'll just continue playing Rummikub without you, sleepy boy. After lunch was egg hunting time. My sister-in-law had tons of plastic eggs filled with candy. Good stuff – Jolly Ranchers, Laffy Taffy, Twix, Rolos. She hid them all around the yard for the girls, and for Colby she hid them up and down the driveway so he could drive to them in his chair. Well, that was our theory anyways. He wouldn't do it. Simply would NOT do it. He would drive his chair forward a few inches, stop. Turn right for a bit. Stop. Go backwards for a few inches. Stop. You get the idea. No matter who encouraged him or what we said, Colby would not drive towards those Easter eggs. Seriously, if Laffy Taffy doesn't get you motivated to do something, nothing will. So his cousins collected his eggs for him. Pitiful, Colby, just pitiful.

Spent the night again Sunday, and came home Monday around 2:30. Mom followed us over and helped me get Colby out of his chair and unpacked. The packing and unpacking for Colby is a pretty big job. Okay, actually it's a huge job, and I really appreciate my mom helping me get settled once we got back here. My boss at work had called out sick. Apparently there is a nasty virus going around the pharmacy, and one other coworker has tested for flu. The flu?! In April?! Good grief. So when the night nurse got here to stay with Colby, I went in and worked for a while. Wasn't too thrilled with it, but I'll be glad next week when I get my paycheck. Colby is on spring break this week. I had envisioned all these fun things we were going to do here at home. Clean out his toy box. Use adaptable switches and get them all working for him. Use eye gaze for fun stuff like playing games on the internet. Want to load some pics and videos on eye gaze so Colby can show his friends. Well, haven't gotten to any of that quite yet. And I'm working today so it's doubtful much extra will get done. All work and no play...

We did take Colby swimming yesterday, which of course he loves. That was fun and enjoyable for him. Gave him a bath last night. I went up to the house and took some pictures in the basement. We have some water leaking in during heavy rains. I'm thinking once we get the gutters fixed and cleaned out, that will help with the water situation considerably. But we also want to go ahead and somehow waterproof the basement. My friend took the pics and is going to talk to a waterproofing company to maybe get it donated or at a discounted price. It never hurts to ask!

The nurse will be here in 10-15 minutes, and I need to finish getting ready for work. Here are some recent pics. Sure do love my new camera. I've become quite the shutterbug. More soon, peeps. 

Colby's ear looking great:














Colby's ear looking shitty 3 days after above pic was taken. So frustrating:














I really don't think he could get any more handsome. Easter Sunday 2015.



















Bunny cake, after we made it and I did surgery on it. First attempt looked a little creepy. 











Grandpa teaching us to play Rummikub:















Beautiful tulips at our beautiful house. I want to move so very badly! Can't happen soon enough!