AND THAT'S A WRAP

It's the last day of SMA Awareness Month. I didn't exactly live up to posting something each day. Of course now I can't remember if that's what I said I was going to do or not. But hey, give me a freakin' break, will you? Stuff happens. I get busy. I like sleep. Blogging doesn't get done. Actually, I think Colby and I do a good job spreading awareness just by living our lives. I guess it's extraordinary to some; it's just habit and the way it is for us. Respiratory treatments, g-tube feedings, suctioning, doctor and therapy appointments, hauling at least 5 pieces of equipment around every single place we take Colby, home health nursing and dealing with insurance and/or Medicaid and/or ordering supplies on an almost daily basis is what it takes to keep Colby going. And I've always been an open book when it comes to Colby's diagnosis. Actually I encourage questions. How else can you learn unless you ask? So if you ever have an questions about SMA, ask me.

Let's talk about Colby for a minute. The sweet, funny, stubborn, handsome joy of my life. Colby has been given many opportunities to become more independent. He has had a power wheelchair for years. We've experimented with many different switches and ways for him to drive his chair. The system we have works very well. Colby uses his left thumb to start and stop the wheelchair. He watches this little box up front with an arrow. Whichever way the arrow is pointed is the way the chair will go. Colby is extremely accurate doing this. However, he chooses not to drive properly. That boy wouldn't drive straight ahead if you begged, asked nicely, asked mean, threatened him or any other means of him following directions. Trust me, I've tried them all I don't know how many times over the years. Same goes for his eye gaze. Colby is very precise in his eye movements and is able to move quickly and accurately through the different eye gaze screens. He can turn on the TV, DVD player, go to NetFlix, get on the internet and go straight to nick.com. He is amazing to watch. However, he refuses, and I do mean refuses, to use that eye gaze for proper communication. For years we've been encouraging him any way we can think of to use proper greetings when people come over, ask for what he wants to do, use the eye gaze for schoolwork, etc. He flat out isn't going to use it for communication needs. He'll tell jokes. He'll change TV channels. He'll get on the internet, but he isn't going to tell you what he wants or needs. Like I tell him all the time, it's a good thing he's so stinking cute!

I struggled with Colby not wanting to be independent for a long, long time. I would think how can I motivate him? Every teacher and every therapist who has ever worked with Colby has asked me the same thing. The bottom line is Colby doesn't care to be independent. He doesn't care to express his needs. He doesn't care to drive somewhere on his own. It would drive me crazy. I mean absolutely cra-cra to the point I would cry, cuss, cry some more. Then eventually I was like, gal, you have to let this go. And I told Colby, all this equipment is here for you when you're ready to use it. I figure if the day ever comes when we wants to go around the block and he's driving his wheelchair, he will. Or if he needs/wants to tell us he's bored, or hot or whatever, he'll let his know. Doesn't mean I've given up on him. We still hook up the switch on his wheelchair and let him drive around in circles. He uses his eye gaze daily. Sometimes I'll make him work on specific vocab words, sometimes I'll let him fart around and change the TV channels 1000x over. It just wasn't worth the fight anymore. Pick my battles, right? So what I learned from this is what I wanted for Colby wasn't necessarily what Colby wanted for Colby. Quite a revelation.

Will it be different in the future? I sure hope so. If not, it is what it is. Colby is stubborn and controls what he can, the way he wants to control it. And I'm leaving it at that. Good night, all. I'm one sleepy mama and my comfy bed is calling my name.

BETTER NOW THANK YOU

Thank you to my sweet and thoughtful family and friends who text me, sent me FB messages or called me to make sure I'm ok. I am. I've talked myself down off the ledge, so to say. Yesterday and today have been much better emotionally for me. Just felt like I had to get it out. That if all those horrible feelings stayed inside, they would fester and I really would have a meltdown. But I didn't. Crisis averted. Moving on.

I think I might have some good news. Remember how I went ballistic when Colby's primary insurance denied his backup vent. I'll say it again, I mean really!! Who is that freakin' stupid to deny someone a life-saving, essential piece of medical equipment. OMG every time I think about it I get pissed all over again. Anyways, it took about a month, but I think we've made progress. The lady at James Medical sent me a copy of a letter from United Healthcare saying the backup vent, pulse/ox machine and pulse/ox probes that were denied since June have been approved until November. So now she can rebill for everything and UHC “should” pay for these items now. I'll believe it when I see it. But she seems optimistic so I guess I should be too. We also got Colby's new alternating pressure mattress yesterday. So maybe all the work I did in August to get what Colby needs is paying off somewhat. The next item to tackle is the repairs for Colby's power chair. It is literally being held together with duct tape! Gotta love that duct tape. I guess it's UHC's new policy to deny everything up front, then request a peer-to-peer conference with one of Colby's doctors and one of their medical specialists. Really?! REALLY?! That's what they did with the backup vent, now it's what they're doing with the wheelchair. Yeah, like the pediatrician knows what's wrong with Colby's wheelchair?! He just signs the freakin' order. So now I will call the pediatrician, tell him what to say, then he can call UHC and schedule this overly stupidass peer-to-peer call. Here's another one of Colby's doctors having to take time away from patient care to make this stupid call, for something that should have been approved easily and months ago. Don't even get me started. It's infuriating.

Got Colby ready for swimming today. Drove to the pool. Doors were locked and there were no cars in the parking lot. Uggggh. One of two things happened. Either there was an “incident” in the pool earlier that day and they had to close. Or there is a week every year that the pool is closed for maintenance cleaning. Either way, there was no swimming for sweet boy today. Decided to take him to the Humane Society to start talking about getting a pet. They had lots of cats and kittens to look at and pet, but no dogs available. Strike 2. If and when we do get a pet, it'll be a dog. I really wanted to start out with a cat, but one of Colby's nurses is highly allergic. He said he would have to quit if we get a cat, so that was the end of the cat discussion. The earliest I would consider getting a dog would be Christmas. Maybe even next Christmas haha. I'm in no hurry because let's face it, I'm going to be the one responsible for this critter. Plus I absolutely love our house exactly the way it is. First time a puppy or dog chews on the new furniture or craps on the floor, I'll flip. We're just starting the discussion. Yep, it's official, I have lost what few marbles I had left.

That's about it for now. The nurse is doing a great job taking Colby to school. She usually comes home frazzled a couple times a week. I just smile and say yeah, it can be a challenge sometimes. But overall she's doing fine. Plus Colby doesn't throw a fit every day, so that's a bit of progress too, I suppose. Time to tuck in kid for the night. School day tomorrow!

RAW HONESTY HERE

Want to know why I haven't blogged about SMA lately? Because I hate it. Why would I choose to talk on and on about something I totally despise. I try and try to be positive. I truly cherish every moment I have with Colby. But some days, the reality of it all sneaks up and bites you right in the butt. The sinking, overwhelming scariness of it all. The thought that “technically” Colby is living on borrowed time is hard to take. That's bad enough. But SMA is a progressive disorder, meaning Colby gets weaker and worse over time. Ain't that a bitch?! It's hard enough to handle in the first place. But as time goes by, I see Colby gradually losing muscle mobility and strength. He can't stay off his vent the way he used to years ago. I hate it for him. I just hate it.

I'm not looking for pity, and I certainly don't want anybody's sympathy. But sometimes you just have to cry it out. I cry for the life my son was supposed to have. I wonder so many things. If he could eat, what toppings would Colby like on his pizza? What sports would he have played? What music would he favor? It's hard for me to tell. He's 14 now and should be wanting to get away from his mama, being with friends. Colby doesn't have a lot of friends. Most things he gets to experience are with me and a nurse. That's not the way it should be. Not even close.

And no, I'm not sitting here typing this and bawling my eyes out. Actually I haven't done that in a long time. But I figure I'm due soon. I just love it when other people say wow, I don't now how you do it. Well guess what, I don't know either. There are days that dealing with SMA smothers me. I can't think straight. I can't imagine moving on if anything ever happened to Colby. I can't imagine doing this another 14 years. Colby keeps getting bigger and I keep getting older. Both of those are scary thoughts. Trust me, people, I'm scared, exhausted and constantly worried about what the future holds for both Colby and me. But I don't know what else to do except push forward. Colby tries his best every day (except for schoolwork haha.) Every single thing that child attempts to do, even breathing, is a struggle. Helping him along the way, providing him with a healthy and happy life, is a job I take very seriously. I'm blessed to get to do that. I just have to remember that sometimes it's going to be hard. It's supposed to be hard. Parenthood is difficult. Raising a child as a single parent is really difficult. And being a single parent to a special needs child is really, really difficult. Today is one of those days I struggle to understand it all. I need to look at my calendar and schedule a little me time. Take a moment, cry it out and then suck it up and move on. Because that's what I've done and will continue to do for my sweet boy. Even though it terrifies me.

LIGHT 'EM IF YOU GOT 'EM

The second Saturday of every August (tomorrow night!) is the annual SMA Awareness Candle Lighting. It is held around the world at sunset. It's a way to recognize and honor those who have been impacted by SMA. Colby and I will be participating in this, of course. We keep it simple but meaningful. We'll take a few minutes to light a candle and say a prayer for anyone and everyone who is currently dealing with or has dealt with SMA in the past.

Will you please join us? As another SMA warrior has said on her FB page, “We encourage everyone to light a candle, turn on a candle warmer, turn on a battery operated tea light, use a candle app, light a sparkler, turn on your porch light, start a bonfire or light one in a pit or fireplace, change your social media photo to a candle or something reflective of your support of SMA awareness.” I had to quote that because I thought it was hilarious. I think she hit every form of a candle/flame that exists haha. It's very encouraging to see all the candle lighting photos from everyone. Or just send the SMA community a prayer or good vibes. I truly believe in the power of prayer and a positive attitude. To everyone who continues to love and support Colby and me, thank you so much. It means so much. Good night, all. 

DANTE MISSED A LEVEL

This is an “I really hate SMA and this is just a few of the reasons why” sort of blog. I need to vent. I'm stressed and frustrated. One thing about SMA that stresses the freaking crap out of me is trying to get the supplies and equipment Colby needs. I don't know if anyone else gets impatient, flips his/her lid and dreads dealing with insurance, Medicaid and the various companies that deliver the equipment and supplies, but I sure do. I've dealt with it for so long, I've learned how big of a runaround hassle it can become. Especially after the Apria Fiasco of 2015-2016. Asshats. Anyways, things have gotten weird and hectic around here with some very much-needed stuff for Colby. I'm about to have a major mama meltdown. I just don't understand WHY it is so hard for us to get the stuff Colby needs to, you know, live! And I know we're not alone in this supplies/equipment 10th CIRCLE OF HELL. I was talking with an SMA mom the other day. She said of the respiratory supplies she ordered, 50% were correct. That's a horrible percentage! However, she said on the plus side the company accidentally sent 80 pulse/ox probes. Ha! My guess is they were supposed to receive 4-8. I can guarantee they were NOT to get 80. Shaking my head and laughing out loud.

Here are some of the items I'm currently working on for Colby:

Briefs and chux pads. Now, this has been on ongoing battle for months now. And honestly, I don't know why. There are many other SMA families in Kentucky who get these supplies for their kiddo, no problem whatsoever. But for us it's a total clustermess. One issue is the nursing agency we use is “private duty” and not “home health.” Home health companies handle various supplies for their patients. Private duty nursing agencies do not deal with supplies, so we have to find another vendor to get Colby's butt covers and underpads. There seems to be a major disagreement on who is going to pay for these items. Imagine that! Colby has private insurance and Kentucky Medicaid, so what in the world could the problem be?! I really don't know. All I know is we're not getting briefs for Colby right now. The nurse coordinator at the nursing agency is helping navigate this problem. We're working together to find a company that takes Colby's insurance and also has a contract with Kentucky Medicaid.

Backup vent, pulse/ox and pulse/ox probes. Oh, this one is the biggie! I got a call from Colby's DME (durable medical equipment) company a few weeks ago. Colby's insurance just poof, up and said it wouldn't pay for these items. Ummmm, excuse me, are---you---freaking---kidding---me?! Colby has required a pulse/ox machine since he was first diagnosed at 4 months of age. Oh yeah, after almost 14 years, it's ok, he doesn't need it anymore. Idiots. And they don't want to approve for a backup vent? Colby's vent just happens to be the machine that keeps Colby, you know, breathing and ALIVE. I couldn't believe it when the DME company told me they were having these problems. Then we had Colby's pulmonologist write a letter stating the importance of a vent AND the importance of having a backup. And those fools at insurance DENIED Colby's backup vent again. Now we've taken the next step and have sent Colby's plan of care from the nursing agency, along with nursing notes. Anyone with any size of a brain could take one glance at Colby's diagnosis and/or supporting information and realize the importance of a backup vent, for shit's sake. What are we supposed to do if Colby's primary vent stops working? Just let him die? Bag him with an ambu bag until we could get to a hospital with a vent? The whole thing is so stupid. I don't even know if it's legal to refuse a backup vent to a trach and vent dependent patient. It certainly isn't ethical, that's for sure. So I continue to stay in touch with the DME to see what the latest is on this situation. As I've mentioned before, these are pieces of life-saving equipment that Colby has had his entire life. Now some schmuck dumbass just up and says nah, he doesn't need them. Makes my blood boil.

OT assessment. We need help making sure Colby has the latest and greatest switch. Colby has lost a lot of movement and strength in his wrist and fingers over the years. He has to use a switch that is very sensitive and easy to manipulate. And it seems we always needs help in getting the placement for switches just so. You have to position the switch perfectly or Colby's finger/thumb will get stuck, slide off, etc. I want an occupational therapy assessment so someone can evaluate Colby, and we can discuss future switch options and mounts/placement options for when Colby drives his chair, uses the switches for environmental control, etc. Playing phone tag with the OT. I called her, left a voice mail. She called me, left a voice mail saying she was going out of town on vacation. Of course! Most of Louisville has been on vacation in the last two weeks. She was supposed to call when last week when she got back into town, which she didn't do. Call OT and make assessment appointment also on the to-do list.

Alternating pressure mattress. Colby has a fabulous, really cool, thin cover that goes on top of his mattress. It has tubes that hook into a pump. Then the pump moves air alternately through the cover to help prevent pressure sores while Colby is in bed. We've had it for 3-4 years. It stopped working about two weeks ago. Called the pediatrician's office. Hey, we need a new alternating pressure mattress for Colby. No problem, they said. Just have the DME send us the form and we'll fill it out. Easy enough I think. Call the DME company. Hey, I need a form to get Colby a new alternating pressure cover, his broke. Oh, we don't have those forms. We need an LMN (letter of medical necessity) from the pediatrician. Well slap my ass and call me Edna, which is it?! Do you need a form, a letter, both, neither? So I need to do some followup and figure out what the status is of getting this item for Colby.

Feeding supplies. We get Colby's feeding supplies through Byram Healthcare. Colby's pediatrician's office calls and says yeah, we have this packet from Byram. It's marked URGENT and they want all this information on Colby's feedings. Then the nurse starts asking me all the questions over the phone! The packet should have been sent to either Colby's nutritionist here in town or Cincinnati Childrens where another nutritionist sort of oversees his diet, calorie intake, etc. I said just send me the packet. I'll figure out who can fill it out the best and get it back to Byram. Yeah well, those papers are setting here somewhere in this mountain of mail.

This blog entry is getting rather lengthy. Let's just say I also need to follow up on why Colby's pulmonologist hasn't sent the prior authorization for one of kid's prescriptions. And I need to follow up with National Seating and Mobility because we are waiting on parts to fix Colby's wheelchair. The power box to his wheelchair is literally being held together with duct tape right now. AND Wednesday is Colby's first day of high school! Oh my gosh! He has a new teacher. One of the nurses that has worked here all summer will be the nurse who is going to school with Colby. But she's never done the school thing before, so that's new. And I hear we have a new AM and a new PM bus driver for Colby. So much newness! I don't like it! So of course I'll be following the bus and going to school with Colby and the nurse to help her get comfortable doing the school thing.

I know I'm being a whiny butt. Just suck it up, buttercup, and do what needs to be done to get Colby the things that he needs! I know, I know. But I could cry. I could just find a dark corner, curl up in a ball, start sucking my thumb and rocking back and forth, and cry. Okay, maybe it's not that bad. But trust me, I'm mega-stressed about trying to get this stuff done for Colby. But I shall do what needs to be done, and will call whomever needs to be called. I, I will survive. Maybe. Hoping, praying, that just one of these issues is resolved by the end of the week. That would give me a sense of accomplishment. It's wishful thinking, I know. Thank you for listening to me vent. Some days you're the pigeon, some days you're the statue. Just sayin'

GUILTY OF FEELING GUILTY

Guilt. I've had plenty of it over the years, so let's talk about it.

SMA is genetic, caused by a recessive gene. Both parents are carriers of this “bad” gene. When Colby was diagnosed with SMA, I felt like it was my fault he had it because I'm the one who passed the gene to him. Of course there were two of us who passed the gene onto Colby, but I couldn't see it that way. I don't know if other SMA parents have ever felt like this or not. For me it was compounded by the fact that Colby's dad has other children with other women. Perfectly healthy, non-SMA children. He's a carrier of the SMA gene, too, but didn't know it until he had a child with another SMA carrier (me.) Even as I type and reread this, it sounds crazy. Of course it's not my fault Colby has SMA. I wouldn't wish this disorder on anyone, especially not on my sweet boy. I wanted a baby as much as anyone has ever wanted one. I waited until I was in my 30's to get pregnant. My first pregnancy ended in a miscarriage. That sucked. I was ecstatic when I became pregnant just a couple months later. I read all the books and websites, took very care of myself, and basked in the glow of having my first child. There was nothing I did wrong to make Colby get SMA. However, it took me a looooong time to figure that out. It was just shitty luck. Of all the recessive traits to get from parents, Colby got SMA. Horribly shitty, life-changing luck. Nobody's fault. It is what it is. 

Then there's the guilt of not doing enough for Colby. Again, as I type and reread that sentence, it's ridiculous. Every single thing I do is for Colby. He is always my top priority, no matter what, 24/7. I'll do whatever it takes to get him the supplies he needs and give him a good quality of life. However, I have a child that can't do one single thing for himself, so I feel I always need to be doing something for him. I always feel this way. ALWAYS. If he doesn't need fed, he needs suctioning. If he doesn't need suctioning, he needs range of motion exercises. If he doesn't need range of motion exercises, he needs to be changed. He needs to learn, or work on eye gaze, or needs to be up in his wheelchair, socializing with others. You get the picture. It's a never ending balance of overloading Colby with all the above and letting him just chill and be a kid. There are some days Colby is perfectly happy being in bed, farting around on eye gaze and changing the channels on TV. Then I have guilt of not being able to read the child's mind and figure out what it is he wants to do. I feel guilty when I go to work and leave him. I feel guilty when he gets sick, thinking I should have seen it earlier or should have done different to make him better. I feel guilty if I do take him somewhere and he acts bored or doesn't like it. Of course if Colby would use his eye gaze to communicate, I would have it much easier around here. But, he's not. We all know that. So I'm left guessing and making decisions for him most of the time. I shouldn't feel guilty for that, but for some reason I do. It's an overwhelming reality that Colby is 100% completely dependent on others for every aspect of his life. That's a lot of pressure (and guilt) for those of us who care for him. Ain't nobody got no time for that!

In summary: guilt, it's not fun at all. It's exhausting, makes you second guess yourself and turns you into a complete cra-cra. It's something I've had to work through over the last few years, and I've made great strides in getting rid of those nasty guilt trips. I hope if there are parents out there, especially single moms, who think what they're doing isn't enough, just stop it. If you're a decent person with any sense at all, chances are you're doing all the can do for your child. And there is something to be said for effort. Trying your best and putting your child first goes a long way in my book. The next time you get down on yourself and feel the guilt seeping in, remember what Elizabeth Taylor said, “Pour yourself a drink. Put on some lipstick. Pull yourself together.” It's what I do when that nagging guilt comes knocking. And if that doesn't work, try eating buckets of ice cream, and don't feel guilty for one minute that you need a little help getting through parenthood. It's downright tricky sometimes!

SMA AWARENESS 2016 - Day 4

It's Day #4 of SMA Awareness month. And you know what? I don't want to talk about it. So there's your awareness/info for today. There are times I just don't want to talk about it. SMA is all consuming. Taking care of an SMA Type I child is very physically and mentally hard at times. I've learned it doesn't matter if you have nursing or not. They can HELP care for Colby. And certainly I need a medical professional here to care for Colby if I need to work, go to the doctor, grocery or out with friends. But ultimately Colby is MY responsibility. No matter what. I handle nurse scheduling. I handle ordering equipment, supplies, prescriptions, supplements, everything kiddo needs. I schedule his therapy appointments and attend these so I can make sure I know best how to help Colby. I take him to his doctor appointments. I make sure he gets what he needs when he needs it. Or rather, I really try. Sometimes it's a bit beyond my control. Others are here to help me, but it in the end, 100% of Colby getting what he needs and staying healthy is up to me. And that's fine. That's exactly how I want it. But SMA is very complex and there are so many things that need to be done for Colby. Tonight I would just like to spaz out a bit. Not think about or talk about the statistics, or the realities, or anything else related to SMA. I'm reminded of it all day, every day as it is. I want to get off this computer, get ready for bed and try to relax a bit. Let SMA drift to the back of my brain instead of front and center, if only for a few hours. Good night.

SMA AWARENESS 2016 - Day 3

I really like the pic below representing how someone ends up with SMA. It's simple genetics really. Think back to your high school biology class. "In sheep white is due to a dominant gene (W), black to its recessive allele (w). A white ewe mated to a white ram produces a black lamb. If they produce another offspring, could it be white? If so, what are the chances of it being white?" That kind of stuff. 

 

So of all the recessive genes Colby could have gotten, he got the SMA gene from both of us. Shaking my head. I think the scariest part is that 1 IN 40 PEOPLE IS A CARRIER OF THE SMA GENE! Think about that next time you're in a crowd. We had no idea we were carriers. We had never heard of SMA. No babies on either side of the family died or presented symptoms of SMA. It was total shock when we received Colby's diagnosis. And you hear this same story over and over again. That's why I think it's so important to educate, or spread the word, or bring about awareness or whatever you want to call it. There you go, you've been educated today. You're welcome.