LET'S HAVE A GOOD, COLBY GETTING BETTER FRIDAY, SHALL WE

You know, if I had a brain in my head, I would just take it easy today. But let's face it, that's a pretty big IF. I don't have anything pressing that I "have" to do today. Yes, that's an excellent idea. We'll be taking it easy around here. I could see me doing a couple loads of laundry, making some phone calls, and just hanging out with kid. I may even treat myself to Panera broccoli cheese soup because it is quite yummy and delicious and one of my favorite things on the planet. This past week has drug on and on, and on and on. Let's see if we can have some TGIF moments today.

I swear it's like Colby has been 2 different kids this week. Tuesday he was so much better. He was able to sit up in his chair 2 different times for an hour each. We had him outside practicing his driving. I was thinking oh yeah, this is the turning point for him. Then Wednesday he had a horrible day. What the what?! We tried to sit him up and it was a disaster. Within half an hour his heart rate was over 130 and his oxygen was 87-90. Oh, Colbster. Then once we got him back in his bed, it took a couple hours to calm him back down. I finally called Cincinnati yesterday. I said this is what has been going on with Colby, this is how we've been treating it. They were like yep, good job, you're doing everything right, call us if he gets worse. So we took it easy yesterday, no sitting up. Still doing cough treatments around the clock every 4-5 hours. Colby did take a big, fat morning nap yesterday, and honestly I think he needed that more than anything else. So we'll see what today brings. May try to sit him up again. He has missed 7 days of school so far, and I'm not really sure if he'll be going on Monday or not. We just have to stick with it, "treat the symptoms" as Cincinnati said, and appreciate the progress Colby has made in kicking this cold. We're not in the hospital and that's what matters! Being able to treat Colby's illness at home - priceless!

Colby was well enough yesterday that I was able to do some birthday celebrating. My BFF had bought Eric Church tickets months ago, the day they went on sale. She got me my ticket as my birthday present. Earlier in the week I was worried I wouldn't be able to go. No way I'd leave Colby if he wasn't doing well. But it all worked out and we had a great time. We all met for supper before the concert, and Eric Church puts on one helluva show. He played for over 2 hours! It was awesome. His opening act was Dwight Yoakam. Now, some of the youngsters in our group didn't like him too much. But he's had a lot of hits through the years and I loved it. Had a blast. Can't wait until our next concert.

I've been spreading the word on our fundraiser. Origami Owl jewelry is the mack-bomb-daddy! It's so unique and individual to each person's taste. You know you want some! You can come to our open house on Monday the 29th or you can shop and order online. All the proceeds from this fundraiser will go straight into our "get us a house and out of this tiny apartment" fund. I'm not sure exactly how much money we'll need for a down payment, closing costs and/or handicap accessible changes, but I'm guessing A LOT. Starting early. Doing lots and lots of fundraisers until we're out of this apartment. Somehow, some way, I'm going to make it happen. Luckily I have friends who are willing to help with fundraising and amazing support from many who know us. I simply can't do it by myself. So let's get this fundraising going. You know you're needing/wanting a new necklace or bracelet. Be sure to check out what Origami Owl has to offer. I love this jewelry and would have one of everything in the catalog if I could. If you would like to order, use this link: www.windowtomysoullockets.origamiowl.com/parties/AmyBagshaw451375/collections.ashx

Feel free to order online anytime using the above link above from NOW until September 30th. You must use this link so that your order is reflected under our fundraiser.

There's your Friday update. The nurse is back there finishing up Colby's 9AM cough treatment, which includes manual CPT, saline nebulizer, IPV and CoughAssist. Hoping, praying Colby continues to improve today and over the weekend. Thanks again, everyone, for asking me how Colby has been doing/feeling. Your texts and calls really mean a lot to me. Keeps me going. Love ya!

LET'S GET US A HOUSE!!

- Amy and Colby Fundraiser - Origami Owl Open House - 

Our next fundraising endeavor is to come up with the money needed for a down payment on a house. Oh boy, that's a doozie! This is a huge undertaking, with many fundraisers being held over the next few months. Here's the first! I'm pleased to say my friend Nancy is an Origami Owl consultant/designer and has offered to help with our fundraising efforts. Here are the details:

When

Monday, September 29th

6PM to 9PM

Where

Amy and Colby's place

Contact me if you need directions

More information

Come by anytime between 6PM and 9PM to check it all out!

If you cannot make it to the OPEN HOUSE, you can shop online at:

www.windowtomysoullockets.origamiowl.com/parties/AmyBagshaw451375/collections.ashx

Feel free to order online anytime using the shopping link below from NOW until September 30th. You must use this link so that your order is reflected under our fundraiser.

Nancy is donating 25% of sales (before tax and shipping) that will go into our "get a house and get out of this tiny apartment" fund. Everyone who orders is entered in a drawing for a FREE rose gold dangle bracelet that includes 2 dangles and a mini rose gold locket with charm. Also, everyone who orders $75 or more (before tax and shipping) is entered to win a gold chain and locket set which includes "beach" theme charms.

You are going to LOVE this jewelry because you personalize it just for you! Bracelets, earrings, lockets, bridal line, charms and chains. If you've seen it before, you will be surprised how much has changed...300 new items! Origami Owl Living Lockets are unique to every individual and the options are endless! Whether you are shopping for yourself or a gift for someone special - daughter, mother, sister, friend - you are sure to find something truly personal that will speak to your heart.

Many examples will be available for you to see exactly what Origami Owl is all about! 

Don't forget about your Christmas shopping! This jewelry makes an awesome gift...so unique and personal!

Light refreshments served! Children welcome! Bring a friend! ALL are WELCOME!

SLOOOOOOW IMPROVEMENT, BUT WE'LL TAKE IT

Could it be? Dare I say? Is it possible? Colby is feeling better!! Our weekend was miserable. Simply miserable. Yesterday I was toying with the idea of taking Colby to Cincinnati Children's. His heart rate was over-the-top high, and he was having difficulty keeping his oxygen above 91-92. Colby's oxygen is usually 97-100. I'm not a fan of bleeding oxygen into his vent, but really didn't know what else to do. I could hear/feel gunk moving around in his lungs. Snot was pouring out of every orifice he has. Not to mention the lovely brown-red runny diarrhea he has from the antibiotic. Oh yeah, a barrel full of chuckles around here. Aren't you jealous?

But finally, last night, Colby started to seem to feel better. I gave him a full cough treatment at 10PM - nebulizer, IPV and Cough Assist. I coughed and coughed and suctioned and suctioned that kid. His oxygen and heart rate were stable/normal after that. He fell asleep immediately, and his heart rate stayed nice and low. He didn't need extra oxygen through the night to keep up his oxygen saturation. Ah, a little relief. His 2:30AM and 7:30AM cough treatments have gone equally as well. The nurse is back there finishing up his morning routine. Hoping we can get through the day with high oxygen, low heart rate and overall Colby feeling, looking and acting more like his usual sweet, funny self.

I called the bus drivers last night and the school this morning. Basically I told them I didn't know when Colby would be back to school. Colby hasn't left his bed since Wednesday afternoon. Maybe, just maybe, if he continues to do this well, we could try to sit him up in his wheelchair tomorrow. Maybe. Can't push it.

So I've done little else around here except hover over and take care of sweet boy. Even though we had nursing Saturday morning and last night, as you can imagine, I'm very hands on when Colby isn't feeling well. Yesterday the nurse and I sanitized everything in this apartment that didn't move. Door knobs, remotes, surfaces. I told the nurse, if we touch it frequently, wipe it down. I've been spraying Lysol spray twice daily and have opened the windows trying to de-germ this place. Icky germs, be gone!

My dad came over last night and made me supper. We try to get together a couple times a month to do that. He usually brings the meat - fries fish, grills a steak, etc, and I'll make the side dishes and/or dessert. Yesterday I was like, yeah Dad, I've been really busy with Colby, you're in charge of all of supper. He brought over 2 giant, beautiful T-bones as a late birthday gift to me. He also brought potatoes from his garden, which I baked, and we had salad from the Jay C salad bar. Yep, worked for me. The steak was delicious. I ate the rib eye part last night and am getting ready to feast on some steak and eggs for breakfast this morning. My mom is coming over in a bit to help out. Get the apartment back in order, take home a load of laundry to do for us, etc. It's not a total mess around here, but I could use some help. Then maybe I could sneak in a nap later before the nurse leaves.

Thanks everyone for checking in on us since Colby and I have had the feel-bads. Hoping Colby has turned the corner and continues to improve. I'll keep you posted. 

 

JUST GIGGLES AND GRINS AROUND HERE. Well, maybe not

Oh wow, we've had so much fun around here the last 3 days, I don't know where to start in telling you about it. Nah, just kiddin, it has totally sucked. I was sick with a head cold and even worse, sweet boy got sick, too. Breaks my heart to see him all puny and miserable. He just looks so awful. Colby had gone to school Wednesday. That night he started with a high heart rate, very high actually. It continued to get worse from there. Blaaaaaah. Colby missed school Thursday and Friday. I cancelled my Endocrinology appointment on Thursday and missed work Friday. I was up through the night giving Colby cough treatments, and along with being sick myself was pretty much exhausted for a couple days. No way in this world I could've gotten Colby to the pediatrician. We were both too yucky to get it done. Luckily the pediatrician trusts me enough that when I called and said hey, Colby is sick, please and thank you call him in an antibiotic, he did. Good man. Colby had a much better day yesterday but has struggled a little today. But his fever is gone and his secretions are back to a nice clear color. Yellow/green secretions, not cool. So slowly but surely he's getting better. What took me 3 days to get over will probably take Colby 7-10. Another way SMA sucks. A little head cold can totally knock an SMA kiddo down and out. "Not fair" is an understatement.

There you have it, our last few days. Oh yeah, my birthday was Thursday. Woop-dee-doo. I could have cared less. All I wanted to do was nap and breathe through my nose. Hoping to do some celebrating next week since I'm feeling better. I got lots of nice cards, texts and phone calls. I've fortunate to have so many people care about me and remember my birthday. My BFF stopped by after work and brought me flowers, broccoli cheese soup from Panera and bread pudding from The Café. She knows me well and yes, it made me feel better!

Anxious to see what tomorrow brings. If Colby is doing okay, I'll go in and work some. I don't know though. If he feels the way tomorrow that he did today, I'll stick by close. So many times over the last couple of days I'd walk into Colby's room and his heart rate would immediately drop 10 or so points. Aaaaah, he wanted me in there with him, and that makes me feel warm and fuzzy all over. He may be Mr. Big Shot 12-Year-Old, but at times he still needs his mama.

Time to get kid in bed. I possibly see a nice hot bubble bath in my immediate future. I think I deserve one, don't you?   

PARTIES, POOLS AND FEELING POOPY

Colby's party was huge, wonderful, fantastic, special, and all around freakin' fantastic! We're all still talking about it, and I have so many people to thank. I had help deciding on the theme, sending out invitations, decorating, making food, picking up the cake, paying for items, everything that needs done for a party! Basically I bossed everyone around and told them what I wanted, then showed up with Colby for party time, that was my job. And the fireworks. Oh my, they were remarkable. These were not your average sparklers, trust me. Giant loud fireworks that made that "thoomp" sound when they were lit and shot off. Thank you, thank you to everyone who helped. Thank you, thank you for all who took the time to come see Colby. I don't want to list individuals because I would feel badly if I left someone out. Again, for all who helped and for all who attended, THANK YOU for making Colby's late-4th-of-July-belated-birthday-back-to-school-Colby-kicked-spine-surgery's-ass party so amazing and memorable. The look on Colby's face when I rolled him out of the van and he started looking around at all the people there. Priceless! And the look on his face during the fireworks, doubly priceless! It'll be very hard to top our surprise tie-dye fireworks party.

We've started another project with Colby. I contacted the high school near our apartment in hopes of finding Colby a big brother/peer/friend. Colby needs friendship and male interaction in his life, not just his mama, grandparents and nurses around him all the time. It took a few weeks to get the ball rolling, but I think it's going to work. Two students came over Monday and "hung out" with Colby for about 45 minutes. Colby and I showed them Colby's eye gaze and what all it can do. They were fantastic with Colby. Next time they come over they're bringing pics of their pets as a topic for conversation. Hoping these boys can encourage Colby to communicate more accurately. Two more students are coming over tomorrow after school. Very excited for Colby to make some age-appropriate friends.

We took Colby swimming yesterday for the first time in several weeks. And today we are just plum tuckered out. Yesterday I started sneezing like crazy. Then my head got stuffy, along with a little achiness. Dammit, this mama ain't got no time for dat! We didn't have a nurse last night so by the time I unpacked all our swimming stuff, got ready for school today and got Colby in bed, I was exhausted. I took a swig of TheraFlu, rubbed a little Vaporub on my nose. It's the bomb when you have stuffiness! I think it took me all of 3 minutes to fall asleep. Felt better this morning but as the day has gone on, symptoms are returning. Well hell. Colby is also a little "off" tonight. Higher than normal hear rate and just a slight tinge of color in his trach secretions. So it's doubtful he'll be going to school tomorrow. Maybe we both need some TLC and rest. And Vaporub haha!

I did survive my dentist appointment today. A miracle indeed. I hate going to the dentist with a passion. Terrifies me. Seriously, I hate it. I went last month for x-rays and a consultation. I had a tooth that was driving me crazy. And ta-da, now it's all fixed. And my teeth are super clean and flossed. Good for another year. Then the dentist panic will hit again.

Going to take another dose of Theraflu, rub some Vaporub around my nose (sexy huh) and hit the sack. Tonight it will probably only take 2 minutes to fall asleep. We'll see what tomorrow brings. Hoping sweet boy feels better in the morning. I'll blog tomorrow and let you know.

WEEKEND WRAP-UP - Not much up with us

Not much to report since my last blog update. I was supposed to go to an IEP meeting for Colby on Friday, but it got cancelled at the last minute. It's rescheduled for Thursday of this week. Friday night I actually went out with friends for dinner and then to see a band. Don't even know the last time I did something like that. Had a great time. We're going to get together and do it again in November. Whoever said hangovers get worse as you get older sure wasn't kidding. I had a few drinks, didn't get totally carried away/wasted, but still had a bit of a headache on Saturday morning. Just can't throw them back like back in the old days. But I'm thinking that's probably a good thing.

No nurse yesterday. How many times have I reported that lately? I would call the nursing agency and say hey, we need more weekend coverage, but it wouldn't do a bit of good. I've called and said that I bet 20 times in the last couple of months. Don't get me wrong, I love it when it's just Colby and me. But seriously, I couldn't tell you the last time all of Colby's available shifts were covered in a week's time. We have 5 nurses on Colby's case, one full time and 4 part time. Looks like we need to find us a 6th! My mom came over and helped me get Colby up. Then she helped me study my pharmacy math/word problems for a while. Studying for that test is not going well. Totally stressing me out! My dad came over last night. The Moose Lodge had their annual member picnic and he brought me some grub. Best pork chop I ever ate! Wish I was chowing down on another one right now.

We've been using the vocab builder on Colby's eye gaze. This teaches him where specific words are. Hard to explain. Basically on Colby's "home page" there are 84 pictures/words. Yes, he can navigate among 84 tiny pictures, and he does it with amazing accuracy. So you can go into vocab builder and tell the eye gaze the words you want Colby to learn. Then when you go back to the home page, only those words will show. Make sense? Right now we're teaching him basic words like go, get, make, read, you, up, teacher and a few others I can't remember. Then the teacher sent home the vocab words they were going to use the next day in class. So the speech therapist showed me how to do the vocab building thingy, and now I'll be able to do it any time the teacher sends home a new list of words they're working on in class. Yesterday he did a fabulous job focusing and working on vocab. Today, not so much. That's okay though. Not forcing it on him, because we've learned the hard way that just doesn't work with Colby.

You know what I've been doing all day. Yep, watching football, along with trying to get some housework done. Basically all I wanted to get accomplished over the weekend was to pick up stuff and get organized. I spent the whole afternoon moving crap around from one room or corner of the apartment to another. Great googly moogly we cannot get a house soon enough. Now I'm just waiting for the Colts game to start. C-O-L-T-S Gooooo Colts!! So I'll wrap this up for now. Need to get my nachos ready before kickoff. More soon.

GIMME GIMME GIMME SOME NFL

Okay, this has to be a quick update because football is on! Do you hear me? Football season, more specifically the NFL, has begun. So stinking happy about that.

Colby had his 5th day of school today. It's going okay, considering all the newness going on there. Still a couple of issues that need to be addressed. Won't go into too much detail on those just yet. Tomorrow I'll be going to an IEP meeting at school. I share the feeling with many other SMA families, we despise IEPs. They're horrible. Actually I've never met a parent that enjoy IEPs. Nothing like having to fight tooth and nail for something you feel your child needs/deserves. But what else is new? I've fought for that kiddo for 12 years now and see no need to stop any time soon. So look out school, Mama's a comin'.

I do have a cute eye gaze story. The nurse was telling me this when they got home from school today. About 20 minutes before it was time to load the bus to come home, Colby looked at his eye gaze and said "leave". As in, later taters, I'm ready to get the heck out of here. Funny kid. Then a few minutes later he said "love home". Aaaaah. That's my sweet boy. I guess at that point he was thinking he'd say anything if it would get him out of class. He's a hot mess. His health has remained incredibly stable. Words cannot describe how thankful I am for that. I'm still a nervous wreck every time I watch that bus drive away. I'm hoping the more he goes to school and the more good days he has, the less I will worry about him having a choking incident.

Did I mention football is on now?! Holy crap on a cracker, I'm totally geeked up about it. I won't be making it to Mass this Sunday I'm sure, way too many games on. I'm sure Jesus will understand, right?

I've been studying my buns off for this nasty, icky, super duper hard state certification test they are making me take at work. At first I said, uh no, I'm not doing it. It's way too hard and none of this crap even applies to my job, so I'll quit before I take that test. Yeah well, that attitude didn't last long. There's no way I'd find another job making what I make per hour along with having the flexibility that I have at my current job. Dammit! I seriously don't have time for this. Too bad I suppose. Trying to find a little time every day to study. Quite honestly, my brain hurts.

I'll try to do better at blogging in September than I did in August. No promises. In looking at my calendar for the month, it's pretty full. I have done crap this month like lab work, a dentist appointment (pray for me), etc. I haven't even looked at Colby's schedule yet. I know we don't have any trips to Cincy this month, so that's good. Oh, and I'm planning a surprise party for Colby. It's a combo July 4th, belated birthday, you're-an-awesome-kid-and-deserve-a-party kind of party. So much to do, so little time. But it'll get done. It always does.

Wrapping this up now. Need to watch the rest of the Packers/Seahawks game. In case you were wondering, I love football!