Monday, July 30, 2018

CRA-CRA WEEK LAST WEEK, NOT SO MUCH THIS WEEK

Last week is a total blur. Monday a friend of mine came over and we loaded up the table and chairs I had borrowed from another friend for Colby's birthday party. She drove 25 miles to return them for me. See what about I mean about having wonderful, caring friends? Then Colby had an appointment here in town with his pediatrician. Poor bubba had to have 2 immunizations, one in each arm. Boo. Then I wanted to go see my dad. Got home around 8pm and started packing us up for the next couple of days. Colby had a PT evaluation at Cincinnati Childrens last Tuesday. It was his only appointment for the day. I got the brilliant idea that we (Colby, nurse and I) would stay up there overnight, and we would take Colby to the Newport Aquarium on Wednesday. So I printed out my “Colby out of town list” and started packing, organizing, repacking, reorganizing. Took the front seat out of the van so we could take the portable Hoyer lift with us. Bungeed down that sucker. We left home in time but somehow managed to be 11 minutes late for Colby's appointment. I HATE being late for appointments, especially Cincy ones. I was not a happy camper. Once we got to the hotel things didn't get much better. Unloading, moving furniture around in the hotel room, trying to find everything I packed, which trust me, is sooooo much stuff. The nurse and I were exhausted by the end of the night. Then back up at 6:30 to get Colby ready and everything packed and reloaded to head to the aquarium. And Colby didn't even like it! He had a high heart rate most of the time and kept shutting his eyes, especially when I'd say oooh Colby look at that. Maybe he was tired from his shots. Maybe he's just not that into aquariums. I feel like all that extra work, and money, was really for nothing. But now I know, take the aquarium off the fun things for Colby to do list. The experience was quite un-fun actually.

Wednesday we got home at 3:10 and I had to be at work at 4:00. We had to unpack the equipment and supplies Colby needed for the rest of the night. I was slinging cords, CoughAssists, vents, IPV machine, trying to get out the door to work on time. Needless to say, that didn't happen. Got there a little late, but I stayed late and finished out my time. I was one tired tater by the time I got home.

First thing we did Thursday morning was give Colby his bath! He usually gets a bath on Tuesdays and Fridays. Yes, I only bathe my kid twice a week. Don't judge. He does, however, get washed up every day. You know, all the important parts. Well, that didn't happen since we were out of town, so the first order of business, after giving meds and respiratory treatment, was to wash that stinky boy. He had PT/OT at the Kids Center later that day. We had to cut his therapy a few minutes early. I needed to drop off Colby and the nurse so I could make my dentist appointment at 2:45. I had already rescheduled the appt twice when my dad was so sick. So I was determined to go and get it done. I loathe going to the dentist. Anyone who knows me knows I freak out even having my teeth x-rayed and cleaned. I have a tooth that has resorption issues. I thought you just wait. This will be the day they tell me I can't wait any longer and the tooth has to come out. But, I caught a break there, thank goodness. They told me as long as the tooth wasn't bothering me, we'll let it go until it does. Fine with me. Last thing I have time or money for right now is dental work.

Friday Colby had the last of his summer camps at the Kids Center. There were 4 camps, and he was able to attend 3 of them. I didn't know how it would go with our schedules, the heat, etc so 3 out of 4 isn't bad. The last one's theme was carnival, and there were all kinds of fun activities the kids were doing. Colby got to smash a shaving cream pie in someone's face and also dunk someone in the dunking booth. He had lots of assistance to achieve those tasks, of course, but still, that's fun stuff! We got home and let Colby take it easy the rest of the day. Then that night we took him to his first concert! I local band, which I happen to love, was playing a free outdoor concert. The weather was beautiful so I thought hey, we'll give it a try. If Colby hates it, we pack him up and come home. He loved it! Absolutely loved it! He never got fussy once. Heart rate stayed nice and low. He watched the band, the people dancing. Who knew?! Note to self - no to aquariums, yes to concerts for Colby.

I was never so glad to see a lazy weekend in my life after that week. Colby had pet therapy this past Saturday at noon. But other than that, nothing else scheduled that we had to do. This week is already better. Today the only thing we had scheduled was Hosparus came out to check on Colby, as they do every few weeks. I was able to run some errands and get the rest of the luau decorations down. That's right, Colby's birthday party was 9 days ago, and I just now got all the decorations put away. Again, don't judge. I took care of the important stuff right after the party. Put the leftover pulled pork and cake in the freezer, and put the extra beer in the fridge. Priorities, you know. Another friend was nice enough to help me get everything packed up today. She returned the decorations I borrowed from the Moose Lodge, so that's saves me an errand to run. Ah, such wonderful friends. Don't know what I did to deserve such caring people in my life!

Ok, I've rattled on long enough. Time to clean up the mess where I fried zucchini and start getting ready for bed. Looking forward to zero scheduled appointments tomorrow!

Sunday, July 29, 2018

I'M SUPER TIRED, BUT SUPER THANKFUL

I wanted to thank my family and friends for always being there for Colby and me. And I mean ALWAYS. This has been an odd year for me. I've had the lowest of lows and the highest of highs. And one constant has been the unwavering love, support and care from those closest to us. Please know I see it and feel it. Please know I appreciate it so much. Please know I don't take it for granted. Seems like I'm always needing help in various ways. I swear there are days I don't know whether to scratch my watch or wind my butt. Lately my dad has been ill, and I've learned the hard way you can't be two places at once. When I'm with Dad, I feel like I should be with Colby. Then vice versa, of course. There have been times my Dad has been really sick, sort of sick, not too sick, doing great, doing not so great, sick again. Those of you dealing with aging parents know exactly what I'm talking about. I always thought when one of my parents starting showing signs of illness and aging, I'd be able to handle it. After all, look at all I've been through with Colby, right? Plus having a parent get sick is the more natural “circle of life” occurrence in life, right? Wrong! It has been just as hard watching my dad be sick than anything I've experienced with Colby. I've really had to depend on Colby's nurses to help with Colby. They've been great. I've had to ask friends to help out with Dad when there are times I just can't be there. Everyone has stepped up and been a huge help. Thank you, THANK YOU so much.

This past weekend Colby turned 16. I can hardly believe it. We had a huge party for Colby, complete with 52 guests, a beautiful 3-tier cake, a great luau theme, excellent food, and a fire spinner. That's right, there was a young lady in our driveways spinning fire batons and hoops. Colby's party was one of the highlights of 2018 for me. I wanted to do something really special to celebrate his 16th. Again, I needed help, and my family and friends were more than willing to help. People helped decorate, bring food, address invitations, run errands, clean up afterward. Whatever needed to be done for the party got done. I loved every second of it. I loved celebrating Colby's big birthday! Having a house full of love and laughter is when I'm at my happiest, for sure.

I just wanted to take a moment to thank everyone who has helped us over the last few months. Thank you for checking on my dad when I can't. Thank you for helping with Colby's party. Thank you for understanding if I didn't return a call or text, or if when you talk to me it seems like I wasn't listening. Honestly, I probably wasn't half the time. I've just had a lot of worries and to-do lists running around in my brain like squirrels on crack. I'd like to say my schedule will calm down soon, but I'm afraid that's not going to happen. A lot of decisions are currently hinging on my dad's health. Colby is due for his next Spinraza injection in August, along with getting back to school. I keep telling myself everything is going to be okay. Take one day, one hour if necessary, at a time. Prioritize, do what has to be done not necessarily what I want to get done, accept that I can't be all things to all people all the time, and just keep chugging along. So, time to watch an episode of OITNB then go to bed. Tomorrow is Monday and I have the to-do lists ready to go.