NURSE NEWS (boooo) - HOUSE NEWS (yaaaaay)

Bomp, bomp, bomp, another one bites the dust. Another nurse gone for good. This particular nurse worked 4 shifts/week for us, mostly weekend shifts. She was a no call/no show, meaning when 4PM rolled around last Thursday, she was nowhere to be found. I hadn't heard from her, neither had the nursing agency. Not sure WTH is going on with her, and frankly, I don't care. If she doesn't give a crap about her responsibility to her job/career or to caring for Colby, then why should I give a crap why she disappeared like a fart in the wind? I mean seriously. I text her 45 minutes into the shift to see what was going on. She text me back that she was out of town and didn't know when she would be returning. What the what?! I DO NOT tolerate no call/no show nurses. I was furious. Still am as a matter of fact, and I'm still hurt that she would do that to us. I think somehow she could have managed to let me know she couldn't work for a while. But none of it matters now. It is what it is. She's gone and we have yet another nurse in training to take her shifts. But that's it. Either the nurses we currently have work out and fill Colby's shifts, or we'll just have times where we don't have nursing. I cannot go through meeting and training another new nurse, not right now. Simply can't, and won't, do it.

Okay, enough of that bullshit. Let's talk about something more pleasant and upbeat. I was thrilled that we got a shipment of Colby's feeding supplies today. Colby's private insurance changed 01/01/15 and it has been a pain in the fanny getting stuff ordered for him. Of course, if the insurance company would give me a case manager for Colby like I've called and asked for 4 times already, these processes might go a little easier on everybody. Regardless, Colby has feeding supplies now, and that's what matters. AND I called today and hopefully we'll be getting Colby's respiratory supplies within a few days. AND I called Hosparus, again, to get Colby some pet therapy lined up. AND I called National Seating and Mobility to check on Colby's new switch and mounting system so he can practice driving as soon as he gets back to school. Busy on-the-phone day. Thankful I don't have a headache tonight.

My dad and I went over to the house last night and worked for a bit. It's so exciting. Every time I go over, I think oh my gosh, this is our future HOME. Super, super, super excited to get this house thing going. All flooring – carpet, tile, linoleum – has to be removed. Dad and I used putty knives and got all the old peel-and-stick tiles out of the dining room and hallway. I can't wait to get the nasty carpet out of there next. Don't really have a solid floor plan figured out yet, but we will soon. Once that's done, we'll start the real demolition, knocking out bathrooms, walls, cabinets, etc. Can't wait. Can't wait. That's when it'll start getting really real! I was talking to my BFF and said knowing my luck, we'll start demolition and find a suitcase with body parts hidden in the walls. She said who knows, maybe we'll find a suitcase full of money hidden in the walls instead. She's always such an optimist. I like her idea much better than mine!

That's an update from our little world. Busy day tomorrow. Morning visit from the Hosparus nurse. Colby goes swimming at 1:00. Then he has home bound schooling at 4:00. Hoping to squeeze in a couple more phone calls. Bye for now. Adios, amigos. 

ON THE GO LATELY - SUPER FUN (mini vaca) AND NOT SO FUN (Cincy appts)

We had the best time ever this past weekend. Colby and I packed up and headed out Friday afternoon to hang out with another SMA family about 80 miles away. Fun, fun, fun. Seriously, we both had SO MUCH FUN, and I'm pretty sure the other family really enjoyed us visiting, too. The kids had a blast spending time together. We mommies enjoyed hanging out together, enjoying a gimlet here and there. They were very accommodating, and it was really interesting to see how another SMA family goes through their daily routine. We do the same thing, only different. I do believe a good time was had by all. Actually, I know we all had a good time. Many wonderful memories made. Wish we could pack up and do it again this weekend!

Colby's friend, D, had a list or “schedule” as she called it, waiting for Colby of all the things she thought they should do over the weekend. I must say, we did many of them. The kids played games – Boom Boom Balloon, Bingo and Fact or Crap. D is way into face painting, so yep, she painted Colby's face like a vampire and Colby painted her face like a devil. The pictures are priceless. D has the coolest, half-tailed cat, Mikon. He really warmed up to Colby and vice versa. They have trained this cat to eat cat food off a spoon, so of course “feed Mikon with a spoon” was on the list and Colby did that, too. Colby and I got to play Wii for the first time. What can I say, we don't get out much. I'm probably forgetting something we did while hanging out at their house. If we were awake and upstairs, we were playing, as it should have been!

The weather was decent so we got the kids out of the house. Our friends thought of everything for us, and arranged a friend to drive us around town so I could sit in the back with Colby and care for him. How wonderful and thoughtful was that? Saturday we went to a pet store and Sunday we went bowling. Colby got to hold a couple birds, one of which pooped on him a little. He held the cutest little puppy, I want one. We checked out the fish and of course Colby wanted to check out/hold a ferret. Can't explain this boy's fascination with ferrets. We'll be getting a pet once we move into our house, but I assure you it WON'T be a ferret. So yes, imagine 2 SMA Type I kiddos rolling up into a bowling alley. Oh my. I'm sure it was a sight to behold. But again, it was super fun! Now I'm thinking Colby might need to have a bowling party for his birthday this year. I stink at bowling. I like to bowl, just absolutely suck at it. I bowled an 89 I think, and Colby had an 83.

We did NOT want to leave on Monday. But really didn't have a choice. We got home, unpacked and reorganized, then headed to Cincinnati Children's on Tuesday. Colby had appointments with Wound Care and Endocrinology. Wound Care because he has a never-healing sore on his ear and now has started showing red marks on his bottom. I'm not messing around with that. Endocrinology because Colby is due for an infusion to help with low bone density. We had to wait until he was completely healed from spine surgery to do the infusion. So my phone calls in the near future will include lining up the infusion to be done at home, along with getting pre and post infusion lab work done. Also need to work on getting this air-filled pad thingy Colby's PT has recommended that is supposed to help with pressure areas.

Ok, you've been updated on the goings-on around here. Visiting with our friends was fabulous, but getting back to reality has been rather sucky. That's the way it always is though, right? Time to get rolling for the day. Maybe I'll get this Christmas tree packed up and out of the living room. Don't judge me. But then again, maybe I'll program some of our trip pics on Colby's eye gaze so he can show his high school buddies when they come to visit today. Yes, the pics take priority. Of course anything with Colby takes priority. As it should be, the little stinker. More soon. Hope to be sharing house updates soon. Haven't worked on it much since we've been out of town. Still can't believe we have a house! Super good things going on around here. We are very blessed. Trying to follow the “too blessed to be stressed” philosophy, but honestly, I'm a little wigged out right now. Many phone calls for Colby and much to start doing on the house. But it will all fall together as it's supposed to, I'm sure of it. Bye for now, blog reading peeps.

BIG, BIG, BIG, AWESOMELY AWESOME, HAP-HAP-HAPPY NEWS!!!

We have a house! The closing was today! I can't remember the last time I was this excited and nervous at the same time! OMG do you hear me? Are you reading this? COLBY AND I NOW HAVE A HOUSE!!!

Oh happy day. I've been waiting for this day for oh, I don't know how long, 3-4 years I guess. So here's what you need to know:

The house came on the market on a Saturday. I looked at it the next day on a Sunday. An offer was made the next day on a Monday. There was some back and forth and counter offering from both sides, and by Wednesday, December 17, the final offer was signed. Since then, it's been getting inspections done, getting the title search done and waiting for closing. I've only told close family and friends up until now because I'm very cautious and superstitious about these types of things. Because if anything can go wrong, around here, it will. But not this time. This house has been a true gift from God. It's a fixer-upper, which is exactly what I wanted so we can make it handicap accessible and functional for sweet boy. It's in the neighborhood I wanted, the floor plan I was thinking of, the square footage I think we need and guess what else? It has a ramp already. Shut the front door, can you believe it?!

So where do we go from here? Well, Colby and I are getting out of town for a couple of days for some much needed change of scenery. As for the house, soon we will be meeting with the contractor who is interested in doing the renovations to talk about what Colby needs and of course the budget. Holy moly, this is all flying by so quickly. Needless to say, our lives have suddenly changed for the better. Don't get your panties in a bundle, it'll be several months before we're ready to move. We're not moving unless it's move-in ready. But this is a huge, giant step forward for us. Once we meet with the contractor, we will be scheduling a demolition day in the near future. I'm thinking mid to the end of February maybe. We will be needing LOTS and LOTS of help to do the demolition. The contractor said that we could save around $3500 if we do the demo ourselves, so guess what, we're doing it ourselves.

Okay, that's it for now. In summary, Colby and I now have a HOME. It's a fixer upper and we will be renovating it for the next few months. Then we will move to our new HOUSE and leave this dumpy, dingy apartment living behind. Thank you to every single person who ever gave us a dime and helped us get to this point. It's a long road ahead, but a road I've been waiting so very long to travel. Grab a hammer, grab a broom and grab a paint brush, it's about to get really interesting around here!!

SOME JANUARY MID-WEEK BLAH BLAH. Nothing exciting really.

Well, I'm trying to think of something witty or profound to say, but really, I got nothin'. I guess the big news around here is I decided to put Colby on home hospital for a while. January for sure and probably February also. You know that nagging feeling/gut feeling you get sometimes about a certain situation? Based on my life experiences, you should ALWAYS follow that feeling. Something has been telling me I should pull Colby out of school for now. Many SMA parents do this with their kiddos during the winter months. Between the flu and nasty stomach bugs popping up everywhere, along with these bitterly cold temperatures, I feel this big "don't do it" over me when it comes to sending kid to school. So that's my final answer. Called the school yesterday to get the paperwork rolling. Of course there are forms that must be filled out and signed by a doctor. Can't wipe Colby's hiney without a signed form from the doctor. Insert eye roll and sarcasm.

Colby's insurance changed on 01/01/15. His private insurance. So being the good little mama I am, I thought I would be proactive. I called the wonderful, intelligent, helpful people at the new insurance company. That's more sarcasm obviously. Fifty-four minutes later, and I'm not kidding, I got absolutely nowhere. Trying to get Colby a case manager so I can have a "go to" person since his diagnosis is complicated and so many specialties are involved in his care. I was told his name was "in the system" and that a case manager should be calling me "in the next few days." Who wants to bet these chuckleheads don't call, and I'll be calling them back next week for follow-up. Don't get me wrong. Very thankful Colby has both private insurance and Medicaid. But totally not in the mood to deal with new chuckleheads. Can you say vodka needed?!

I worked today, and we (all 2 of us) are super duper busy in pre-pack. Well, I went to work after I dropped off the dish I made for the Bereavement Committee at church. I mean, doesn't everybody run broccoli casseroles around town at 9AM, or is it just me? So busy my boss came in on her day off and we both worked to get us caught up. So busy that I'm going in for a couple hours tomorrow so we can do more catching up. We were told the hospital is at full capacity - what does that tell you? LOTS of germs and illnesses floating around. Another reinforcement that I'm doing the right thing to keep Colby out of school for now. He's already had one nasty illness that ended in an 11-day hospital stay. I'd just assume skip that mess again if at all possible.

Colby is back there getting his evening respiratory treatment. I need to fold laundry and get some b-day cards ready to mail. One will be 2 days late and the other 2 will be about a week late. Woopsie! Better late than never, that's the motto we're using with this situation, yes?

My BFF Kim got me a calendar for Christmas called 365 Stress-Free Moments for Women. Ha, what would make her think I need that? Inserting more sarcasm, because I'm so good at it. So far this is my favorite saying - "Life itself cannot give you joy unless you really will it. Life just gives you time and space - it's up to you to fill it." Can I get a big Amen on that? Find joy in the everydayness of life. Make peaceful moments for yourself, your soul will thank you. Be kind to others, give them a smile. They have struggles to endure, also. You ain't the only one. At least that's what I think we should all do. Whatever that's worth.

Time for Harry Potter and addressing b-day cards. They WILL go in the mail tomorrow morning. Good night all. Stay warm. Stay healthy. Stay tuned for lots of interesting news in our near future.

2014 WRAP UP - 2015 IS HERE - BRING IT

Happy New Year! Is it too late to wish you that? I sincerely hope those I love and care about have a healthy, happy and prosperous 2015. I see I haven't blogged since last Monday, whaaaaat?! Better get you all caught up.

Last Tuesday we took Colby swimming, and again, we were the only ones in the pool. Sweet. That way we really don't have to worry about germs. As for Wednesday, New Year's Eve, during the day I ran some errands. Then Colby needed his trach changed and had to have his port flushed. He's such a busy boy. My friend Kim, her boyfriend and their doggie son (Kizmo) took Colby and me to Lights Under Louisville. It was awesome, just like last year. I had a headache coming on throughout the day. As the day went on, it got worse and worse. I got Colby to bed at 10:00 and I followed at 10:15. We really partied to bring in the new year, huh? I took an Imitrex, a melatonin and rubbed lavender essential oil on my wrists to help me sleep. Not sure why, but the headache hung on for 3 days. I was pretty stinking miserable. Better now, and so thankful for that.

After coming over on New Year's Eve, Kim offered to come over on New Year's day and help me clean. Ha! Yes, it was bad. Lots of clutter, dust, more clutter. My brother and his family were coming down Saturday. Not that the apartment had to be spotless for a family visit, but wow, it needed some attention for sure. Which it got. I straightened up before she got here, and we cleaned for two solid hours. And, as an added bonus, she took home my laundry and did it. Do my friends love me or what?! I mean really, who does that for someone? My friends, that's who!! I have sweet, wonderful friends and would be so lost without them.

Saturday my brother, sister-in-law, nephew and niece came down for the day. Sort of a post holiday get together. We had a great time. Sent the guys out to pick up some pizza and bread sticks. Colby got a bingo cage and cards for Christmas, so we played a couple of games of that. Colby was impressing them all with his eye gaze skills. He's such a showoff. And yes, I put them to work, too. The guys took down my outside Christmas lights. There were only two strands. The gals helped me get the ornaments off the tree. Now I just have to find a bag for the tree since the tree box got wet through the year.

Today we had a great day. The Colts won, woot woot! A friend of mine brought her daughter and sweet new grandbaby over for a visit. I couldn't wait for Colby to meet Caroline. She's such a peanut, not even 3 months old! We don't have any babies in our family. Colby was quite smitten with her. We put him in bed and tucked Caroline up under his arm. It was a precious photo op for sure. Hope they can come over and visit again soon.

Ok, that's it. Our week in a nutshell. Colby goes back to school tomorrow. I'm not ready. NOT ready. I want another week with him. And of course it's supposed to get bitterly cold this week. Splendid. Got to run. Downton Abbey season premiere is on. Then tuck in boy with some Harry Potter. More soon.