THURSDAY'S THOUGHTS

I'm here! My computer isn't broke, nor are my fingers or thumbs broke. I know I'm long overdue for a blog update, so let's see what I can come up with tonight.

I know every time I blog I say we've been busy. Well, it's true, we seem to stay pretty darn busy around here! Last week was especially so. I worked the whole week. It gets a little cra-cra on those weeks being away from home so much and still trying to do what needs to be done for Colby. But I managed. Didn't throw any fits or break any equipment at work, so that's always a plus. Hopefully it will be a while before I need to work 5 or 6 days in a row. That boss of mine has to be running out of vacation days soon, right?!

This week, busy also. Monday we went to the pet store. We checked out the puppies, rabbits, birds, fish and ferrets. Leave it to my kid to be fascinated by the baby ferrets. Colby has lost his mind if he thinks he's getting a stinky, sharp-toothed, rodent-looking pet. We picked out 6 new fish. Yes, we're giving the fish tank another go. To jog your memory, we had 3 fish back in the winter. Killed them all within 3 months. The water in the tank is very cloudy right now. They tested it twice at the pet store and said it was fine. We're down to 5 fish as of now. I'm determined to get this son-of-a-bitchin fish tank running successfully. Monday night we took Colby to see TMNT. That's Teenage Mutant Ninja Turtles for those who don't know. He liked it! He actually watched the movie and didn't jabber through the entire thing. Good job, Colby.

Tuesday we took Colby swimming for the first time since before surgery. I couldn't do a lot of the exercises/PT I usually do in the water with him since he's still on some post-surgery restrictions. He loved it, as always. Tuesday night was the open house at Colby's school. I thought it would be a good idea for Colby and his teacher to meet before he started school. It was miserably hot in that school building. I guess with people coming and going and the door being opened so much, the AC just couldn't keep up. Couldn't wait to get home. This hot weather can just go away at any time. First person I hear complain about the cold gets punched directly in their throat. I freaking hate hot, steamy, miserable, humid weather. Absolutely hate it.

Yesterday I worked, so Colby just hung out during the day. I know he was tired after everything he had done so far this week. Last night I ran around this apartment like crazy getting Colby ready for school. That's right, sweet boy's first official day back to school was today!! Luckily the nurse who has been working with us since we got home from surgery has agreed to go to school with Colby. This is a huge worry off my mind. He'll be great with Colby, but for now, he's a rookie in the sense that taking Colby to school is a whole different scenario than watching him here at home. New nurse, new morning bus driver, new teacher, new speech therapist. Me, nervous? You bet I was. I followed the bus to school and stayed in the back of the classroom for when the nurse had questions. Tomorrow I will do the same. Colby had a great first day. No crying, no whining, no choking. Can't ask for much more than that! Now we have to get through tomorrow, too, then Colby will have 3 days to rest up and get ready for school next week. Check out the pic below. Is he not the most handsome 7th grader you have ever seen? Yes, yes he is.

Colby and I have finished reading his Hardy Boys book. Now he needs to decide if he wants to start reading Harry Potter or another Hardy Boys mystery. That Frank and Joe, you just never know what shenanigans they'll get into, haha. I'm hoping for Harry Potter. But then again, if we start that book now, chances are a year from now we'll still be reading it. We're not what you call consistent on reading every night.

That's it for now. Need to unpack and repack the dishwasher, fold the clothes that just buzzed in the dryer, and go tuck in that awesomely awesome sweet boy of mine. More blogging when I get time. Soon I hope.

 

 

BLOGGING EARLY WHILE MY BRAIN IS STILL WORKING

August is designated as SMA Awareness Month, and I feel like I've done a big fat zero nothing in helping to spread the word. But then again, hopefully my blog continually helps to educate others on the everyday triumphs and heartbreaks that come along with this disorder. There's no way I could blog about SMA and simply give the facts and statistics associated with it - too emotionally tied to it for that. For now, let me just say this. SMA is a horrible, devastating diagnosis. However, I refuse to let my mind "go there" in relation to what SMA has taken from my son. I simply can't do that, or I would have given up and had a breakdown years ago. Instead, I choose to focus on any good or positive I can find. Not only is Colby alive and beating the odds, he is thriving, and that's more than I could ever ask. I'll work on some awareness stuff on the rest of my blogs this month.

 For now, I'll update you on what we've been up to lately. Our weekend was good. I watched a lot of golf. And yes, it was by choice. The PGA tournament was here in Louisville, so that was an extra incentive to watch. Plus I'm slightly weird, I just like to watch golf. Saturday we had no nurse, and that was fine with us. After doing the Cincinnati trip on Friday, Colby and I needed some down/chill out time. I did manage to give him a bed bath. Really just wanted to get his hair washed. It can get pretty funky after a couple of days. I think the only other time I left the apartment was to go to Mass on Sunday. Colby didn't leave the apartment all weekend, too hot and muggy to get him outside. But again, needed some down time and needed to get stuff done around the apartment, so that was fine, too.

We did light our candle for SMA Awareness on Saturday night. There is one Saturday night designated for this in August. Anyone who wants can light a candle as a way to remember all the angels who have passed from SMA, and also to honor those who continue to fight the SMA battle. And trust me, it is a battle/war. It was emotional and powerful seeing on Facebook all the candles lit from different families. I want to thank my friends who took the time to light a candle. It means a lot to me that you cared enough to do that. Maybe next year I could get my act in gear and arrange a group candle lighting. Note to self for next August.   

My mom came over Tuesday. We took Colby's wheelchair outside and cleaned it. I'm talking take an old toothbrush and clean every nook and cranny clean. Amazing how filthy that chair gets. It was nasty gross, with what I assume was a combination of food, dirt, slobber and various other unpleasantness that has collected on it over the last year or so. Looks fantastic now, though.

School in Colby's school district started yesterday, but of course he didn't go. I'd estimate Colby to be 80% recovered from surgery. He has done amazingly well, but not quite ready for bumpy bus rides, sitting up all that time in class, etc. I'm thinking I'll send him the last week of August or right after Labor Day. He is able to sit up 1.5 hours easily, sometimes up to 2 hours. Obviously he needs a little more time to heal and build up his sitting tolerance again.

Okay, that's it for now. I need to get a shower before the nurse gets here at 8:00. Not sure what we have planned for today. If the weather is decent we'll get Colby outside to practice driving his chair. Or in his case, practice spinning in 1000 circles. Kid drives me nuts. Why in the world doesn't he want to drive forward, explore his surroundings, decide for himself where he wants to go?! He obviously doesn't wish to do those things. So if spinning in circles makes him happy, I guess I'll let him do it. Lord, give me patience, and please hurry!

PLAYING BLOG UPDATE - Yes, I know it's been a while

A friend of mine told me last Sunday at Mass that I have been "blog-less" for a while. And yet here it is, 6 days later and I'm still blog-less! I got up early today just so I could give a blog update. Actually that's not entirely true. I also needed to get the laundry sorted and get a load going, so I took care of that first. Now it's time to catch everyone up on all things Amy and Colby.

Busy. That basically sums it up for me. As a lot of moms, especially single moms tend to do, I have neglected my own health a bit over the last couple of years. Now I'm playing catch-up. This week it was a checkup with my new family doctor and a dreaded visit to the dentist. I'm one of those individuals who hate, despise, and am all around terrified of going to the dentist. It's disgusting! The noises, the sounds, the smells - it's all just too much for this chick to handle. However, I have a tooth that has been driving me crazy for the last couple of months. I told myself as soon as Colby got home and recovered from surgery, I was going to get that tooth taken care of. Dammit. So I am. Went to a new dentist. They just did x-rays and a consultation this visit. Still hated it. The "bad" tooth has a filling that has come out, so I get that fixed along with a teeth cleaning next month. Blah, blah, blah. I'm dreading it. Stupid sadist dentist. Mammogram this coming week. Woo-hoo.

Wednesday I worked. I've been told by the pharmacy I have to take this awful pharmacy tech state certification test in order to keep my job there (insert extremely large sigh and eye roll). There are 2 of us that work in the pre-pack area. First we were told we had to take the test. Then we were told we didn't. Now we're being told we do. Super duper. The other pre-packer (is that even the proper term for us? Don't know) just took her test yesterday and passed. So now there's no getting around it for me. If I want to keep my job there, which I do, time to get busy and study. Sure. Great. No problem. I'll find time to learn formulas and pharmacy information that I'll NEVER use at my job. I don't know the first thing about retail pharmacy or compounding pharmacy because guess what - I don't need to know these things in order to do my job properly. Pisses me off to no end. But I'll do it. Soon. It's on my ever-growing, overwhelming "to do" list.  

Thursday was the dentist in the morning, then I came home and packed us up for Cincinnati. Colby had a follow-up appointment yesterday with the ortho surgeon. Can you believe it's already been 45 days since Colby had his spinal fusion surgery?! Holy moly time sure does fly. We went up Thursday night and stayed at a hotel near the hospital. I don't think Colby is ready for an up-and-back car ride to Cincy yet. Too much sitting, too many bumps, etc. And of course the road construction is awful no matter where you go. Plus our appointment was early, 10:10, and we had to get x-rays first. So Dad, Colby and I went up Thursday night and headed out bright and early from the hotel Friday morning. The surgeon said Colby looked fabulous, which I knew he would. Check out the x-ray of Colby's hardware below. Unbelievable. Colby's incision looks fantastic - no redness, puffiness or signs of infection. Every now and then we'll see a spot of blood at the bottom of his incision, but the surgeon said this is normal. He said everything looks good and he wants to see Colby again in 3 months. He gave the okay for Colby to go to school, but only if I think he's ready. And I don't. School starts next week on the 13th, but I've decided Colby needs a couple more weeks. So I'll probably send him back the last week of August or might wait until after Labor Day. Haven't decided yet. The full time nurse we have has agreed to go to school with him. Thank you, Jesus, this is such a win-win for everyone, but he still has to do orientation with the school nursing agency. So I couldn't send Colby to school until that's done anyways.

I see my blog update is getting long, so I'll close it up for now. Actually it's also time to give Mr. Colby Sweet Boypants his morning meds also. We have no nurse today, and that's fine by me. We're both tired from the Cincy trip, so we're going to have a spend-the-day-in-our-pajamas-all-day day. Oh who am I kidding, I'll be in my pj's and that kids will probably just hang out in his brief. Maybe some socks if his feet get cold haha. Colby has spent the majority of his summer naked, and he seems perfectly fine with it. Me too, less laundry. More blogging soon. I'll do better with updates, I promise. Well, I don't promise, but I sure will try. Bye for now. Hope everyone has a super duper weekend. Count your blessings. Be grateful. Smile and give someone a hug. Or throat punch, depending on what the situation calls for. Sometimes jackholes just need a throat punch, case closed.

HAPPY BIRTHDAY SWEET BOY!!!!!!!

Well, it was an interesting weekend around here, seeing as we had NO nursing. Clueless jackholes at the nursing agency. I've been trying to reach the head poobah there to discuss this issue. I sent him an e-mail early last week informing him we had NO nursing lined up for Saturday and Sunday. I also called him last Friday and left a message that we needed to talk because we had NO nursing all weekend. If Colby wasn't recovering from surgery, I wouldn't be so pissed off, but of course that's not the case. Guess I'll try to call again today and see what we can do about the situation. Yah, can't wait.

But let's focus on the good. Thank the Lord I have wonderful family and friends. Over the weekend I had 6 different people come over and help me with Colby. Both my parents took a "shift" and also some BFF's came to help. THANK YOU, everyone, for coming over in our time of need. For the most part, Colby is back to his normal schedule. I just need help turning/changing Colby and getting him up in his chair. Well, that's not entirely true. My mom and I washed the windows while she was here, all 2 of them. My friend Kim helped me sort through some of Colby's toys while she was here. Hey, you ask what can I do to help around here, I've learned to put you to work!

Colby has left the building! I've been scared to try and take him somewhere because I hear from other SMA peeps that bumps are hard/painful when recovering from spine surgery. But we've been home since the 10th and Colby hasn't got beyond the apartment parking lot in his wheelchair. So we went for it. Sunday I wanted to run an errand, so my friend Amy and I loaded Colby in the van and away we went! We traveled 2.1 miles down the road and back, 4 miles roundtrip. Baby steps you know. Colby did just fine. Then I thought what the heck, let's try it again. So the nurse and I loaded Colby up yesterday and drove the paperwork to Colby's school. They just waited in the van while I ran them inside. That was like almost 7 miles roundtrip. Good job, Colby. He's getting back to "regular Colby" not "post surgery Colby" a little bit more every day. Couldn't be happier to have that surgery mess behind us.

And here's the bestest, coolest, most fabulous news of the day - Colby Michael has turned 12 years old! Happy, Happy Birthday Sweet Boy!! My parents and Colby's dad are coming over some time through the day to see him, but we don't have big blowout plans any time soon. Colby just isn't up to it yet and I haven't had time to pull anything party-related together. I told Colby once he went and saw the surgeon for a follow-up on August 8th, and gets the okie-dokie that things are going fine post surgery, we'll plan a party. Won't be the first time we've had to have an August or September birthday party for Colby. Actually I'm going to plan him a surprise party. We have leftover July 4th fireworks ready to go. Not sure when and where the party will be, but I'm going to make sure it's a Jim-dandy. He deserves it!

That's the update for now. I'm looking forward to spending the day with sweet birthday boy. Last night I ran to Kroger and got him a card, a giant pyramid-shaped balloon, big cupcake (he can eat the icing and the rest of us can split the cake) and some ice cream. Actually, sounds like a birthday celebration after all! I'm busting with love and pride over that kid. Love that sweet, stubborn, funny nuthead to pieces!

HAVE A FLIPPIN FABULOUS FRIDAY, EVERYONE

Colby is still sleeping and the nurse will be here in a few minutes. For now, I'm enjoying my morning coffee. Enjoying the quiet. Thought I would give everyone an update on how it is around here post surgery.

Colby is doing very well, as we would expect nothing less from the awesomely awesome, stud, amazing rock star kid that he is. He wore clothes yesterday for the first time in 3 weeks! The most he has worn since June 24 is his brief and maybe socks. We put some button down pj's on him. They were blue to match his glasses and he looked extremely cute in them, as evidenced by the pic below. We're still being very careful when we turn him, log roll precautions only you know. Still freaks me out to know he has 2 giant rods, multiple screws holding them in place at his neck and pelvis, and one giant incision running down the length of his back. He has been through so much in the last month. Every day I see him more and more like my pre surgery sweet boy. I was reluctant to believe it, but life does return to "normal" after spinal rod surgery, it seems. He still has a ways to go, taking one tiny step and day at a time.  

Colby is back on his home feeding schedule also. I was tired of screwing with Farrell bags, making up new feeding schedules every day. Trying to bolus feed him a little more each day. He has been peeing and pooping just fine and was tolerating his small boluses just fine, so I said screw it, we're going for it. Today will be the 3rd day we're making his food as normal and feeding him on his regular bolus schedule. Another "back to normal" item to check off the list.    

Colby is also sitting up more and more each day. It helps that the weather has been gorgeous around here lately. We take him outside and do some walks around the apartment complex parking lot. Slow and sure wins the race; surgery recovery is a marathon not a sprint. Yesterday he sat up one time for 50 minutes and another time for 40 minutes. I think that's pretty darn impressive. We sure don't miss putting that heavy, cumbersome back brace on Colby, and I'm certain he doesn't miss wearing the damn thing either. He wasn't able to wear his AFO's (ankle/foot orthotics) the whole time he was in the hospital because of his PICC being in his leg. He's back to wearing those again also. See, slowly, ever so slowly, getting back to our normalcy around here.  

The new nurse is working out well. He shows up on time. He dresses professionally. He listens when I show/teach him something. He's sweet to Colby. He takes his time and does his work correctly, yet he's not so slow I want to slap him out of the way and say oh forget it, I'll just do it myself. And yes, I've told nurses before they were going to have to find another gear, slo-mo wasn't going to cut it. He's doing so well, in fact, I decided to go to the pool here at the apartment complex. Haven't set foot inside that pool in 3 summers, so I thought why not. Lord knows I need some sun on these poor old white legs. Headed over to the pool at 2:45. Nurse leaves at 4:00, so that would give me just enough time to take a dip, lay out and dry out, get in a little R&R. The pool is right out the front door. You can throw a rock and hit it in case the nurse and/or Colby needed me. I walk in the gate with my iPod, book and towel, ready to chill out. The lifeguard says, uh, don't get in the pool. I take my lunch break from 3:00-3:30 and the gates will be closed during that time. Can you believe that shit?! The one time in 3 years I decide to enjoy the pool, and that dingbat needs to go on break. So I sat on the picnic table and patiently read my book. She returned promptly at 3:30, and I was able to get in a whole 20 minutes of pool time. Ridiculous. Don't know if I'm even going to bother with it today or not.

That about sums it up. Nurse is here now, back there giving Colby his morning meds. I have various "to do" things to get done today. Pay bills. Mail paperwork for Colby's school. Call and bitch out the nursing agency because we have NO nursing this weekend. Freakin' idiots. If you're out there is home health nursing land and have issues with getting proper nursing coverage, trust me, you're not alone. We deal with it and hear it all the time from other SMA families, too. But I won't let it get me down! I'm so pleased with Colby's recovery, and I'm so happy to have this ordeal behind us. That's all that really matters right now. So I'll keep smiling - TGIF everyone! Count your blessings - God is good!

GLAD TO BE BACK IN THE 'VILLE

We are HOME! And Colby is doing GREAT! And I'm a very HAPPY mama! Of course Colby's recovery is going to be long and slow. Also, it will definitely takes a few days for me to get stuff caught up around here. But let me repeat, we're HOME, and that's the best news I could possibly share/blog with everyone.

The ambulance showed up 10 minutes early on Thursday. Actually they had to wait for us a few minutes to finish up Colby's cough treatment, I needed to sign the discharge papers, etc. We had the same dudes we had the last time we rode home from Cincy in an ambulance. Weird, huh? I remember them because one of them is a very large man (okay, he's fat) with the personality of a doorknob, and the other was a very nice, smiley older man. Luckily Doorknob was the driver and Smiley rode in the back with Colby and me. We had given Colby a dose of valium for the ride home and he did fabulous. I was hoping he would take a little nap in the ambulance, but nope, that wasn't happening.

Then the we've-been-gone-over-two-weeks-now-we're-home madness began. My dad, mom and stepdad came over and brought all the stuff from the hospital. When Colby was in the hospital, he was in contact isolation for MRSA and respiratory contact for pseudomonas. This means that when we are discharged they throw out EVERYTHING in that room. It's unusable because of the isolation precautions. So anything that we're able to use here at home (catheters, saline bullets, syringes, many other items) we packed up and brought home with us. That's one good thing about having a hospital admission, you get lots of extra supplies to use at home. I had a nurse scheduled to be here at 3:00. But wait, it's not that simple. The nursing agency here in town has to "discharge" Colby when he goes in the hospital. When he's discharged from the hospital, the nursing agency has to send out the Director of Nursing to do a resumption of care. Major pain in the patootie. But we jump through the hoops to get the care that Colby needs, don't we? Once we got all that out of the way, the unpacking, organizing, settling in began. And that's what I've been doing ever since it seems.

We had no nurse scheduled yesterday. Can you believe that crap? Long story that deals with one of Colby's nurses failing to communicate and also a goof up on the nursing agency's part. Whatever. Colby's dad stopped by on his way to work and helped me get Colby changed and repositioned. Then my mom did the 10AM to 1PM "shift". She helped me get a lot of housework done. God love her, she is a tiny cleaning dynamo. Colby's speech therapist came and hung out with us during the 1PM to 4PM "shift". We worked on trying to get Colby's eye gaze up and running. No luck. She was nice enough to take it with her to work on it. I just won't have time the next few days to fart around with it - call the company, have them talk me through various things to try, etc.

So it'll be more of the same over the weekend. Take care of sweet boy. Yesterday he sat up in his chair twice, 30 minutes each. Today we'll shoot for sitting up twice, 35 minutes each. We have nursing during the days, and I have friends who were nice enough to volunteer and come spend the night with us. I don't think Colby will have any trouble overnight, but just in case he needs repositioned or changed, I will need help with that since Colby is on log roll precautions during his surgery recovery. Going to try and get to the grocery while the day nurse is here. That'll be my big outing for the day.

Time to make Colby's formula and figure out his feeding schedule for the day. He's not quite ready for bolus feedings. Well, actually he probably is, but I'm taking things nice and slow. No use taking any chances of that tummy of his. Maybe I'll even get in a nap. Yeah right. For some reason that just isn't happening around here. That boy of mine is high maintenance!

TOMORROW, TOMORROW, I LOVE YA, TOMORROW

Because we're out of here. Later, we're blowing this pop stand. See ya, wouldn't want to be ya. We gots to be going on our way now. See ya around like a donut. You get the drift. Ambulance is scheduled to pick us up at 10AM tomorrow morning. Colby is peeing and pooping just fine. Colby is tolerating his home feeds. He's getting all the ingredients that are in his home recipe, along with all the free water. We're running at a continuous rate, and we can start working on boluses when we get home. As far as I'm concerned, it was more important to see if Colby could tolerate all the ingredients than whether or not he could handle a bolus. The TCC went along with this logic. I may try to give him a bolus later today, just to see how he does. Oh no, that means I'll have to use my brain and do some simple math. Don't know if I'm quite up to that or not.

They removed Colby's PICC last night, all 66 cm of it! Holy crud, the nurse kept pulling and pulling that thing out. Unbelievable. In rounds it came up what they should do with Colby's port, since he is now getting everything (food, fluid and meds) through his g-tube. I said don't you dare touch it. Keep it accessed until we are walking out the door. No way am I giving up Colby's access. I know how things can go. We'll de-access his port tomorrow, just as I said, last thing as the ambulance stretcher is about to roll him down the hallway.

Really that's about it. I'm thrilled beyond belief that we're heading home. I'm sure Colby is happier than all of us rolled together. Yes, Colby hit a couple speed bumps over the last 15 days. But overall he has done FABULOUS with this spine fusion surgery. He is a strong, patient, brave, remarkable young man who continues to amaze and make me proud every day. I would say we received 99.9% excellent care while here. There's always going to be a nurse or therapist who rubs me the wrong way or is a total dingbat, but most everyone has been great. So thankful this hospital is here for us. When I read or hear the way other SMA families are treated in other places, it breaks my heart. Been there, done that. I know firsthand what it's like to argue with a doctor, saying no really, if you continue the path you're on, you'll kill my kid. Not this hospital of course, the children's hospital at home. But that's another bunch of stories for another day. Again, just incredibly thankful for all the wonderful staff at Cincinnati Children's. They rock. They took excellent care of my sweet boy, my parents and me.

Colby's discharge is coming with perfect timing. It was time for Mom and Dad to trade their "shifts". Mom left today and Dad came up with the van. That way Colby and I can ride in the ambulance and Dad will be able to use the van to get Colby's power chair home, along with all our other personal belongings. We've had a couple of visitors over the last 2 days, and let me just say THANK YOU, gals, for coming to see us. Really does help break up the monotony of the day.

I've been working on the nursing schedule for the rest of the week. I've learned one nurse is out of town with a death in the family, unsure of when she'll be returning. That would be our only full time day nurse. Well okay, so it's going to be interesting when we get home. But I'll make it work. I always do. We'll manage somehow, I'm guessing with the help of my mom and dad, again. One step at a time, just get us home first, right?

Going to wrap this up now. I told Colby a couple of hours ago, hey Colby, you're going to get your cough treatment at 3:00, then we're going to try and sit you up in your chair. He started whining. I felt horrible. All we can do is try. I'll have them give him a dose of valium before sitting up. And if after a few minutes he's uncomfortable, we'll get him back down. But the more he sits up, the better it is for him, so that's what we're going to do, in moderation of course.

Hopefully tomorrow this update will come from the comforts of my home computer. Will update when I can. Thanks everyone for the prayers. I do believe they've been answered.