FULL DAY FOR US

Colby has had his IPV treatment and is getting tucked into bed. Cupcake is hanging out in front of the fireplace, gnawing away at a chew toy. Hey, at least it's not the wood trim. I'm poking around Facebook and not watching the president's speech. Just not feeling it. I'll catch the highlights on tomorrow morning's news. 

Colby had school today. Yes, he's still in school even though it's winter and cold/flu season. I'm sure many people think I'm completely cra-cra for sending him to school right now. They may be right. Supposedly the flu peaks in February. I may up and one day decide to put him on home/hospital for a few weeks. Just depends. Once he was on the bus, I headed to my second job. Yep, more proof I'm completely nuts. I've been working at a law office since before Thanksgiving. I don't know what I was thinking taking on another part time job. Oh wait, now I remember, I need the money! But it got to be too much. Too much driving back and forth. Too much time away from home not getting stuff done. So today was my last day there. It's bittersweet. I liked the people I worked with and the job. I certainly like the extra money. But Colby comes first, and there are times I just need to be at home to make phone calls, schedule appointments, get Colby to PT/OT, clean, etc. I'm hoping the law office calls me to work there occasionally. Or I really hope I win the lottery.

I got home from work about 7 minutes before the bus got here. The nurse and I got Colby out of his wheelchair and into his bed. I stretched him out and put on his hand splints. Then I headed to the gym. Yes, don't laugh, I go work out sometimes. Then as soon as I got back, the evening nurse and I took Colby up to Great Clips for a hair cut. He needed it – his hair was looking funky! Then we gave him his Tuesday night shower. He was doing his eyegaze after that. His thing now is YouTube. He'll bring up the internet on eyegaze and go straight to YouTube. Then the craziness begins. He'll open YouTube over and over again, so there are multiple Spongebob, Sesame Street and Veggie Tales running at once. It's enough to make me want to jam rusty ice picks in my ears. So today was a very full day for Colby. We just got him tucked in and he's already about to fall asleep. Most nights he stays up until around 11. I'm not far behind. I need some QT time with the bunny, a shower, then I'm heading to bed. Tomorrow Colby has school and I have my first job. Yep, really need to win the lottery. Good night.

WHEELCHAIR WOES FIXED? Hopefully

Waking up at 4:15 is not how I like to roll. Getting up at 5am is definitely not how Colby likes to roll, either. But we did it. Did an up and back trip to Cincinnati Childrens today. Fingers crossed, I think we have solved the wheelchair head piece dilemma. Colby tried a Savant head piece, and we were all pleased with the fit and support it offers Colby. So NuMotion will order the Savant and return the Stealth. Same old blah-blah. Papers have to be signed by a doctor. Paperwork has to be submitted to insurance for approval. I'm not sure how long it will be before we get the new head piece. The guy from NuMotion said well, you can pay for it out of pocket and you'll get it much faster. I gave him the look of death and said yeah, right. Price is roughly $550. Think we'll just wait for insurance or Medicaid approval, thank you very much.

Then we went aaaaaaaaall the way to the opposite end of the hospital so Colby could get labs drawn. I told that bimbo to call for the Vascular Access Team, but noooooo, she said she could access Colby, no problem. And do you think she accessed him? No. She got one chance. After she couldn't do it, I was furious. But I had on my big girl panties and calmly asked her to page VAT to do the blood work. VAT brings an ultrasound machine so it's much easier to get access on someone like Colby. Long story longer, the blood work is done. The neurologist also ordered tests that require a urine sample. We tried to collect it while at the hospital today, but that was a no go. So I'll have to get an order from the neurologist and find somewhere to take a sample for testing this week. I get to have all the fun, huh?

I have big news. Really big, super big news. I'm getting another cell phone. That's right, the time has come for me to put my iPhone 4 out of commission. A friend of mine gave me that phone over 3 years ago. It's been real and it's been fun, but that phone has to go. I don't know whether to laugh or cry at how very slow it runs. I can't download apps on it. Often it tells me I have no more storage. I could go on and on about the issues of having a phone that old. Well, we'll see. I'm very technology stupid. I'll probably get intimidated and chicken out in the next couple days. But as of right now, I'm doing it!

Time for The Good Doctor. Must go. More updating soon.

WHEELCHAIR WOES

The good news is Colby has his new power wheelchair. We went to Cincinnati Childrens in August and got it all lined out. There are many, many things to consider when ordering a wheelchair for someone as medically complex as Colby. First he was going to get the newer model wheelchair. Then I was told the tray that slides onto this wheelchair would be permanent. Nope, won't work. I have to be able to take off the tray to get Colby in the van. So we were able to get the same style of wheelchair Colby had before with new seating, arms, head piece, etc. Colby's chair was delivered December 28^th, which is amazing! We've never gotten a wheelchair that quickly before. It has to go through insurance, which always denies it. Then it goes to Medicaid for approval. Once it's approved, then it has to be ordered and built. So getting the wheelchair within 4 months really is incredible. The bad news is we've had some problems with it, especially the head piece. Of all the parts and pieces Colby needs to work properly on that chair, it's the head piece that's THE most important. We (two wheelchair dudes, PT, and whoever else wanted to take a crack at it) have worked hours on that damn thing. I'm ready to roll that chair in the Ohio and watch it sink. My opinion is the head piece was fault from the start, which is hard to believe because both his old and new head pieces are made by Stealth. Not sure how we had such good luck with the one on his old chair and such bad luck on the one on his current chair. Actually we've been using the old head piece on his new chair because the new head piece is that crappy. Lovely.

So that will be appointment #1 tomorrow. We'll leave here around 7:30 tomorrow and go to the Perlman Center to get this wheelchair looked at and hopefully fixed. After that, Colby's appointment #2 will be getting labs drawn. Unfortunately they need to be drawn peripherally, meaning they will have to stick him to get the blood. They aren't able to draw the blood from his port because they need to do a PT and PTT to look at his clotting factors. You can't do this test with blood from a port because there is heparin sitting in his port, and that will mess up the clotting factor values. I hope this peripheral draw goes as easily as the one he had done at Cincy in December. I had the lab technician call the Vascular Access Team, who brought an ultrasound machine to find the best spot to access Colby. One stick, which is fantastic. Hoping for the same tomorrow. Then we can head home. Really hoping to be back on the road and home before afternoon traffic starts getting crazy.

I don't know if it's proper or not to ask for prayers for a wheelchair, but I am. Really hoping the Savant or the HeadPod that Colby tries tomorrow is the solution to his head piece issues. I'm not giving up until we have this resolved. Can't have sweet boy's head not properly supported. We'll see.

CINCY VISIT HIGHLIGHTS

I was told over Thanksgiving that I needed to do a blog update. Well, here I am 4 days before Christmas, doing just that. Actually I'm just going to update on Colby's recent Cincinnati Children's visits.

My dad, a nurse and I took Colby to Cincy on Tuesday. He had one appointment that day to meet his new endocrinologist. Well that didn't happen because she had her baby the day before. We met with some other endocrinologist and discussed Colby's recent DEXA scan. One of the 3 measurements they take was improved – the other 2 not. Colby is going to continue his Zometa infused for another year or so, then we might discuss him taking a break for a while since the medication isn't really helping to improve his bone density. However, it is helping to prevent bone fractures, and that's our main goal.

Yesterday we had to be back at the hospital at 7:30, yuck. Colby's first appointment was with ophthalmology. Colby's prescription has only changed slightly. Basically it has gone from 20/20 to 20/25 if we keep his current glasses, which is what we're going to do. That's what the eye dr suggested. I asked her about Colby getting contacts. I said I would be the only one to handle them. I certainly don't expect the nurses to go sticking their fingers in Colby's eyeballs. But the ophthalmologist said because Colby has astigmatism, she doesn't recommend contacts. Something about he doesn't blink enough, and contacts that you wear with astigmatism you need to blink a lot. Something, something, blah, blah. Next we headed to the lab where Colby had to get a peripheral blood draw. I requested they go ahead and call the Vascular Access Team since Colby is a horrible stick. She used an ultrasound machine and was able to access Colby on the first time. Yay! They drew 8 vials of blood, plus Colby had to give a urine sample. What I thought would be a horrible experience ended up being easy-peasy. Then we went on to pulmonary lab to test Colby's vent settings. That was painless, and I was even able to get some vent connectors from them. Score! His last appointment yesterday was PT. They evaluated Colby to see if he has made any improvements since being on Spinraza. Well duh, we all know Colby has done amazing things while receiving this drug. Unfortunately, the increased movements we're seeing in Colby don't add up to points on their scales. I'm calling bullshit! But they made notes about Colby having a better heart rate, vocalizations, stamina, etc, along with their PT measurements. I don't care what they say, in my books he has done wonderfully on Spinraza, and I won't let any test tell me different. We were all over that dang hospital. Started in Section E, then A, then C, then back to A. Very busy, very exhausting day by the time it was finished.

Today we went to Neuro Clinic. Meaning we show up, get Colby comfy on the exam table, then all the doctors come to us. Ah, much easier. Colby saw the nutritionist, rehab doctor, pulmonologist, and neurologist. We're going to tweak Colby's formula recipe a bit, both calorie and fluid intake adjustments. No vent settings changes at this time. Then we hightailed it down to Ortho Clinic. They took x-rays of Colby's spine. Every time I see those, I'm amazed at the amount of hardware running down my kid's back! X-rays were fine, no worries. Thank goodness.

Got home about 4pm. Got Colby settled and most of the unpacking done. I'll work on that some more tomorrow. The rest of the night involves not much. Colby is in his room doing YouTube on his eye gaze. I'm lounging on the couch in front of the fireplace, yelling at Cupcake when she tries to reach up and eat my houseplant. I'll blog again soon and fill in the last couple of months. Yep, I'll get right on that.

Ok, I'll try.

OCTOBER OCCURRENCES

Hey, guess what! You're going to be shocked to read this, but we're short on nursing. Yeah, can you even believe it?! Colby has a nurse who works the weekend evenings, Sat and Sun from 4p-12a. She needs surgery and will be out for the next 4-6 weeks. I'm not going to even attempt to get her shifts filled. We're darn lucky to have a weekend nurse, and I'm pretty sure the nursing agency will have trouble filling the shifts. Screw it. I have plans to go to a Halloween party on the 28th. One of Colby's other nurses said she would work that night so I can go out. Other than that, Colby and I will just spend some QT together. As one of my friends said upon finding out we'll have another nurse out, it's one step forward and five steps back with the nursing situation. When nurses call off it doesn't even phase me anymore. I'm actually more shocked when they all manage to show up for their shifts in a week. I have no control over it, so I better learn how to deal with it.

Colby started attending school on October 2^nd. That means we're both getting up earlier, and the nurse has to be here earlier in the mornings. We're slowly adapting to the new schedule. And I've decided to send Colby to school all 5 days a week instead of 4. I really like his teacher this year. She has already learned how to navigate his eyegaze. I think she sees potential in Colby and is also willing to push him when it comes to his extreme stubbornness. There's no way I'm taking Colby's swimming away from him, so we'll be doing that one evening after school. Hoping it doesn't wear Colby, and me, out too much. We'll see how it goes.

Spinraza injection #3 is done! Colby did as well this time as he did with the first two. One more loading dose on Nov 15^th, then he won't have another dose until 120 days, which is March 2018. Our appointment was at 6AM. Damn, that's early. I gave it some thought and decided doing an up and back trip would probably be easier than packing, loading, unpacking, unloading, repacking and reloading all of Colby's stuff. So we left at 4-freaking-AM last Thursday. Everything went smoothly. Colby and I both seemed much more at ease this time around. I don't take chances with him developing a lumbar puncture migraine, so I make him lie flat for 48 hours. He was not digging it! I could tell he was totally bored. Sorry kid, Mama's rules. It's a small price to pay to avoid complications from getting the injection.

We're getting excited for Halloween. I've been doing some decorating here and there as I've had time. I've decided my decorations are all too cutsie. Time to step it up and get some bigger, scarier stuff. Also need to decorate outside more. Okay, I don't know if I NEED to decorate more outside – I just really want to do it. If I had the time and money I'd turn this darling little bungalow into a creepy, scary, awesomely decorated house. Wonder if I could find a good price on a coffin somewhere...

So that's a little update. I'm working some extra hours this week so I figured I'd better blog while I had a little time to do so. You know, gotta make hay while the sun shines. More soon, as time and energy level allows.

SPINRAZA #2 - DONE!!

This week has been crazy busy for us. Some for the good; some for the bad. Let's start with the bad, then end on a good note.

The transmission went out on the van. Not cool. I get frustrated with my dad sometimes because it seems like he's always finding something wrong with the van. I'm sure there are many of you who have dads like that, too. Well, he mentioned a couple of times there was a “whining” with the van. I ignored him and also started ignoring the whine. You know, just turn the radio up and the problem will go away. Well it didn't. He took the van to get it looked at and sure enough, the transmission was going bad. Not something you can mess around with for sure. Dad took the van to get fixed and brought me the old, big, brown van to drive in the meantime. The Terdmobile. Good old Terdy, still getting us from Point A to Point B when needed. I couldn't take Colby anywhere in it because the lift is broke, but I was able to run errands, go to work, etc. There were some issues in getting the van back, but we finally did on Friday morning. Just in time because we had a trip to Cincinnati Childrens this week for Colby's Spinraza injection. More about that later in this blog.

The water chamber on Colby's vent tipped over last Wednesday, causing water to travel through the vent tubing, into his trach and yep, into his lungs. Colby's nurse somehow got a pillow caught in the tubing and caused the water chamber to spill. I know it was an accident. I know she didn't mean to. I know she felt horrible about it. However, that doesn't change the fact that her carelessness put my kid in great danger! Thank God I was home when it happened. We immediately began doing CoughAssist treatments and trach suctioning with Colby. I was online with other SMA moms to get advice on what to do, how aggressive to be with treating the issue, etc. We monitored Colby very closely, gave him extra CoughAssists throughout the day, and re-positioned Colby frequently for postural drainage. I have to idea how much water got in his lungs. Scared me to death. My mind started racing. He'll get sick. He'll get pneumonia. We'll have to cancel the Spinraza injection. You might think I'm overreacting, but really I'm not. All that very well could've happened. But it didn't, and I'm thankful we were able to “fix” Colby without having to go get x-rays, get on antibiotics, him getting sick, etc. Living in fear isn't very fun sometimes.

Let's move on to better, nicer topics. This past Monday was my birthday. My mommy offered to take me to lunch, anywhere I wanted to go. I said hey, there's a Frisch's Big Boy down the street. Lived around here 20 years and have never been. So that's where we went! Patty melt and hot fudge cake made for an excellent birthday lunch. I got lots of cards, calls, texts, visits and gifts. It was a great birthday. Thanks to everyone for taking the time to make me feel loved on the celebration of the day of my birth!

To say van transmissions ain't cheap is an understatement. We had some very considerate family and friends help us pay for the van. I cannot thank you enough. When I found out it was the transmission, my head started spinning. I had no idea how I was going to work enough extra hours to pay for it. I feel with these Spinraza injections, Colby needs me now more than ever. I'm working on getting him extra PT sessions and also OT. We need to really work to make the most of this medication he's receiving. Thank you to everyone who gave me “birthday money” which was really funds to help pay for the van. It has taken a huge worry off my mind, and it's appreciated so much.

And last but certainly not least, Colby's 2^nd dose of Spinraza is a done deal! We went up on Sunday night and stayed again at the Ronald McDonald House. Had to be at the hospital at 7:30am. Colby's lumbar puncture went as smoothly this time as it did last time. He did, however, wake up at 2:30am and didn't go back to sleep. So obviously he's having some anxiety about all this. Understandable! I think for next injection, October 12^th, I'll see if they can prescribe him a little something-something to help with that. Everything went very smoothly, just like last time, and we were home at 2:45 yesterday. I checked on him hourly through the night. He had no issues with sleeping. He's doing great. Keeping him flat for 48 hours. I've been giving him Tylenol since he had the procedure. We're going to stop the Tylenol and see how he does. He certainly doesn't seem to be in any pain or discomfort. Such a tough kid! Looking forward to getting these loading doses done. Halfway there!

Okay, I really, really need to stop typing and get something done today. Is it bad that I want to curl up on the couch and watch movies all day? But the mound of mail on the table and loads on laundry waiting on my tells me that's probably not an option. But then again, would it really matter if I took a couple hours to chill out?! Maybe throw in a load of clothes, then some couch time? We'll see how my energy level lasts.

POST SPINRAZA UPDATE

I'm going to make this update short and sweet.

Colby's first Spinraza injection went well. Very well. His procedure was scheduled for 8:57AM and they wheeled him into the OR at 9:03. The radiologist came out in no time and said no problems and Colby's injection was done. He was able to find an opening in Colby's spine easily, injected the Sprinraza and bing, bang, boom, done. Colby stayed in the PACU (recovery) for 2 hours, and we headed home. Got back to Louisville around 3:15. I can't express how damn glad I am to have this first Spinraza over with and done!

I made sure Colby took it easy for a couple of days. He stayed flat for 48 hours. I'm sure he was bored, but that's just too darn bad. Mama's orders. I bought him “Kong: Skull Island” so he watched that a couple of times. Overall he has done very well. His heart rate was really low Tuesday. I assume that was because of the anesthesia. We sat him up in his wheelchair Wednesday, two times, one hour each. Thursday we increased it to 1 hour 15 minutes twice a day. Today he sat up 1.5 hours twice. It's been 4.5 days since the procedure, so I'm assuming he's out of the woods for any complications.

THANK YOU to everyone who stayed in touched. The calls, texts are Facebook communications are much appreciated. We are so loved. I realize that more and more as time goes by. Fingers crossed for a successful injection #2.