TGIF AND HAPPY MARCH MADNESS

Trying to play catch-up today. I'd been doing so good on exercising regularly, then starting a couple weeks ago that changed. Trying to get back on track. Walked 40 minutes this morning. Not exactly marathon training but hey, 40 minutes is better than 0 minutes. Laundry, it never ends! There are only 2 of us in this house. How can we have so---much---laundry! Did a load yesterday, on my 2^nd load today, and have a load waiting. Bleh to sorting, pretreating, washing, drying, folding and putting away clothes. I swear if they made disposable clothes I would buy them! Now for blogging! Haven't blogged in a while and feel it's much overdue. So here's what's new in our little corner of the planet.

Colby was having some high heart rate issues. I don't mean off-the-charts high, but rather, he was not sleeping well. When he is sleeping, his HR should be in the 70's, sometimes even the 60's. For several nights in a row, Colby's HR was averaging 115 throughout the night. I know many SMA kiddos wake up through the night needing to be turned, suctioned, etc. Luckily that just has never been Colby. He usually sleeps through the night. But recently, he would sleep fine, then at various times of the night set off his HR alarm. Sometimes it would beep a few times and be done. Other times his HR was up and would stay up for well over an hour, despite me trying all my mama tricks to settle him down. This high HR stuff was freaking me the freak out! I mean I hit total panic mode. We went through several nights where either of us got much sleep at all. With SMA and Colby being nonverbal, you just never know what to do. I didn't want to overreact but then again, I certainly didn't want to under-react. I was at my wit's end. Long story short, he seems to be fine now. He has slept well the last few nights. We have started setting his high HR alarm at 100. That way I'll know right away if he's waking up and/or having issues. Hoping that mess is over and done!

So, with interrupted sleep and added stress and worry, my migraines paid me a visit. With a vengeance. I felt like absolute hell for a couple of days. A frazzled zombie with a screaming headache, that was me! Once I realized Colby's HR was high only at night, that took away a lot of worry. I can deal with sleep issues, but not cardiac issues. You just NEVER KNOW with SMA. You can't ignore any symptom or change in behavior with our kiddos. They are simply just too medically fragile. I've been watching and hovering over that kid more than usual! If he could reach up and throat punch me, I'm sure he would! Now that he seems to be over whatever it was he had going on, and we've been able to get more solid sleep, my migraines have gone bye-bye.

Funny eye gaze story. The principal at Colby's school paid his classroom a visit. So what does Colby do? Looks at his eye gaze and says, “shut the front door.” Yes, I put that saying on there trying to encourage Colby to use his eye gaze more. But Colby, really, did you have to wait and say that when the principal is in your classroom?! He said it not once, but 3 times. Yes, that child is mine. No doubt. Good thing I've never programmed cuss words on that thing!

We still absolutely love, love, love our new home. Love it! We moved in back in November. Did the initial unpacking, put stuff on the walls, etc. Now comes the 2^nd wave. We're having an open house soon. We want all those who donated to our home to come see how beautifully it turned out. Our super-fine, world's greatest carpenter is working on a few items. Getting the garage finished is the biggie on the list before open house. We still have the original, broke, uglyass garage doors on the garage. Plan is to remove the concrete support in the middle, take out the 2 old doors and replace it with a single, bigger new door. So of course there's framing and construction that has to be done before the big door can be hung. So Charlie (world's best carpenter ever and my super hero) has been getting the framing ready. The door has been ordered and that project should be done by open house. Also trying to do some further decorating, patching the yard where the grass didn't come up, etc. If we didn't do a single thing, the house is still beautiful and everyone will be amazed at the transformation. But you know, I'm a chick and you know how we can be. Everything needs to be just so for the open house. As long as kid sleeps and the migraines stay away, I should be able to get some stuff done in the next couple of weeks. Around watching basketball games, of course. Nothing is getting in the way of my March Madness.

Speaking of which, time to wrap up this blog and get to watching b-ball. Go my Hoosiers go!!!!

TUESDAY'S TALES

Colby is getting his 9PM IPV and CoughAssist treatment. I'm on the cough watching my Hoosiers, trying not to cuss excessively. Trying, not succeeding. Go my Hoosiers, go!

The past week was pretty darn good for us. We are finally starting to get back to something of a normal schedule. Well, our “normal” schedule. The new school nurse is working out well. I stayed in the school building last Monday, just in case they needed me. Then last Thursday I stayed within one mile of the school in case they needed me. Hey, what can I say, I have to make sure my sweet boy is okay and safe at school. But yesterday I just let it rip. New school nurse and Colby got on the bus and I was like, bye, see you after school. Last Tuesday we took Colby to pick up his new glasses, then we were finally able to take Colby swimming. First time in 4 weeks I think. Of course Colby loved it. It's his thing. Last Wednesday we took Colby for a PT assessment at The Kids Center. We currently don't have a PT for Colby, and with his complex diagnosis, we kind of really need one. I was impressed with the facility and really liked the PT who evaluated Colby. Colby will be casted for new AFO's next Monday. Next step after that will be get his power chair evaluated and fixed. As Colby is driving the chair forward, it gradually starts to veer off. Usually it's not as issue since Colby could care less about driving forward anyways. But lately he has shown interest and has been trying to drive correctly, so we definitely need to get his chair fixed for him. We finished up the week with Colby getting a haircut at Great Clips on Friday afternoon. Then on Sunday we took Colby up to the local pet shop to pick out a couple of fish. Hey, I'm very proud to say we haven't killed a fish in several months! We currently have 8 little fish swimming around in harmony in Colby's tank. Hope our luck holds out. I always feel badly when I have to give a little fishie the big flush.

Yes, we still love our new house. Actually I think I love it more all the time. It really is perfect for us, exactly what we need. We're having an open house in April. We want all the people who donated and worked on the house to come see the finished project. So there are several things to do before the big day. Went shopping over the weekend to choose fabric for Roman shades in the kitchen. Slowly starting to get the garage cleaned out. It's shocking how quickly you can accumulate stuff! Our biggie to get done is the garage doors. We still have the nasty, broken, old doors on the garage. We're waiting to hear from the world's greatest carpenter. He's going to fix the structure so we can remove the concrete from the middle and have one large door instead of 2 smaller garage doors. Just makes sense with the van, getting Colby out from the side, my inability to back the van up. Plus a few other things to do, then we'll have a big old party to celebrate our beautiful new home. Not sure I'm ready to have 100 or so people traipsing through here, but I'm really excited to see everyone who contributed to the house and thank them in person.

Going to watch the rest of the IU game and then go to bed. Just wanted to let everyone in Blogland know we're doing well. Colby is still the sweetest stinker I've ever seen. Last Friday his teacher asked him how he was feeling. Colby looked at his eye gaze and said bored. Yep, that's my kid. Then today the day nurse was giving the night nurse report in Colby's room. I guess he didn't want to hear it because he said out. Then the day nurse was telling the night nurse how Colby was mad because he made him stay up on his left side for almost an hour. Not Colby's favorite side. Colby looked at his eye gaze and said whatever. OMG it was too funny. He's a hot mess for sure. But he's my hot mess, and I sure do love him. More blogging soon. Peace.