Friday, January 6, 2017

HAPPY 2017 IS GETTING HAPPIER

Well, the start to 2017 was totally sucky. But we are doing much better now. Thanks to everyone who called, texted or asked on Facebook how Colby was doing. There's no doubt in my mind we are surrounded by so many people who love and care about us! Took Colby to the pediatrician here in town Tuesday. I was leery because his regular doc was out of the office, so we had to see just some other doc in the practice. I really liked him! Turns out Colby had an ear infection. Not really sure how. We didn't go swimming last week because I was sick. Didn't go swimming this week because Colby was sick. But anyways, he's on Omnicef for 10 days. I think we caught it just in time before it started moving down into his trach and lungs. So I've been getting up through the night to do a respiratory treatment for Colby. Nebulizer, IPV, CoughAssist, the whole shpeel. For 2 nights he was up with a high heart rate and low oxygen. For the last 3 nights we've been doing extra treatments. How much sleep are we not getting this week?! But if it helps Colby get better, that's fine. I'll do the same tonight, then reevaluate tomorrow based on how his numbers hold up, the color and amount of his secretions, etc.

I've made the decision to put Colby on home hospital for school during the winter. I'm one of the few SMA parents I know of who sends their kid to school during the cold, germ-infested winter months. Colby has never been sick and in the hospital once during the winter. So weird. He's had major illnesses in September, July and March, but not during the winter months. And there's this little voice telling me, hey, don't push his luck. We could use the rest, that's for sure. There are lots of things we can do with him at home that are educational, if we choose. Plus he'll have a teacher come out for a couple hours each week to bring him his school papers and work on them with him. Pretty sure I'll never regret the decision to spend more time with my kiddo. I've already told him swimming will be decided on a week-to-week basis, based on weather, how he's feeling, etc. He probably didn't like that. We've also always taken him to the pool in the winter. Yes, I know, I'm one cra-cra mama. Never claimed not to be!

We are still without a bunny around here, but it's not my fault, I'm trying! I e-mailed the lady at the rabbit house. She e-mailed back the next day saying I needed to fill out the online application, which I did immediately. Now I haven't heard from her in almost 2 weeks. I called her once, left a voice mail, and yesterday sent her another e-mail. Uh, hello, we're in need of a bunny to put in this ginormous cage set up in the living room! I think it's supposed to be warmer next week. I guess if she doesn't call back, we'll run Colby up to the local pet store to pick out a rabbit.

I have some happy news to share. Last year my endocrinologist found a cyst in the bed where my thyroid used to be. Okay, that's obviously not the good news lol. She sent me to a neuroradiologist. He thought the cyst was nothing to worry about, but wanted to do follow-up a year later. Went to the neuroradiologist yesterday and now he's almost totally convinced the cyst is only a cyst and not a recurrence of cancer. He's calling it a “post surgical cyst thingy,” very scientific term isn't it. The mass/cyst doesn't look suspicious and has shrunk in size instead of grown. So zip-id-eee-do-dah, I'm still cancer free. I could have reached up and kissed him right on the mouth, but managed to hold my composure instead. He wants to look at it again in a year just to be on the safe side.

But the really, really, big, huge exciting news is that with any luck, and work and coordination with Cincinnati Childrens, the drug company, Colby's insurance company, etc, and with the pharmacy gods smiling down on us, Colby will be able to receive the recently approved drug to treat SMA. This is such a huge deal people! After 14 years, there is FINALLY some hope that the progression of his SMA will stop worsening, and maybe, just maybe, he will gain back some strength and mobility that he has lost over the years. The wheels are in motion. Best case scenario, 2-3 months. Regardless, Colby will be receiving a drug to fight his SMA in the near future. I'm flabbergasted this has come to fruition. I honestly never thought a cure or treatment would be available during Colby's lifetime. Never been so glad to be wrong about something in my whole life! I'll keep everyone updated, of course. Right now I've done what I can do. Signed a consent form and signed a start form. Next Colby's neurologist fills out the rest of the start form, submits it to the drug company. Then Cincinnati has logistics to figure out like which department is administering the drug, do they need to hire more people, stuff like that. Amazing. Simply freaking amazing.

Time to tuck in Colby and go to bed so we can get up at 2AM for a respiratory treatment. Oh goody. G'nite all.

Sunday, January 1, 2017

HAPPY NEW YEAR PEEPS

My oh my! I haven't blogged since November 16? I've had a couple people ask me if anything was wrong because I haven't updated lately. I guess it's a combo of being busy, preoccupied with any number of other things or I just flat out haven't bothered to do it.

Hard to believe another year has rolled around huh? Just doesn't seem possible. This was our 2nd Thanksgiving and Christmas in our new house. Unbelievable! We had 12 here for Turkey Day. I was on top my game. Had all the dishes listed so we didn't forget to set something out (who does that?!) Even had times written down so that everything was done at once. Didn't want the hot stuff getting cold and the cold stuff getting warm! Just one tiny little problem. The turkey was under cooked! (I wasn't responsible for the turkey, just sayin') I go in to get Colby up in his wheelchair only to return to a 16-pound turkey rotating/cooking in the microwave. It was kind of funny I guess. Better to have a microwaved turkey than food poisoning, that's my theory.

Christmas was fantastic. Actually, I was sad to see it come and go. Seems like we work, and plan, and decorate, and bake, and shop, and wrap and then boom, the family rolls in and in 4-5 hours it's all over. Took Colby to the Hosparus Christmas party again this year. It's such a great time and the people who organize the party do a fabulous job. It seems to get better every year! Colby got some awesome presents this year including a bowling shirt with his name on it, glow light and items for his fish tank, a couple of board games, movies, clothes, gift cards. Mama Santa is getting Colby a bunny rabbit. Oh my Lord what have I done? On Christmas he unwrapped all the stuff for the cage – hay, feed, toys, etc. Next step was to assemble the cage, which we've already done. Next step is to pick out a bunny! Turns out they have shelter houses for rabbits just like they do for dogs and cats. Did you know this? I sure didn't. So I've filled out the application, and I'll call them this week to see if we can set up an appt to look for our future house pet.

Colby had 3 days of appointments at Cincinnati Childrens Hospital the week before Christmas. By the end of Day 3 we were all pretty much exhausted. But overall the trips went well. Up and back on Tuesday. Then up on Wednesday, stayed overnight and back to the hospital Thursday morning for appointments all freakin' day. Overall the reports were good. No major surprises. I need to call and schedule an appointment for Colby to have a broncoscopy sometime in the near future. Need to talk to the nutritionist to cut about 50 calories daily out of Colby's diet. My sweet little boy is no longer little! He weighs 101 lbs and is about 4' 10” now. Holy crap.

I would say I'll make a New Year's resolution to be more consistent with blogging, but let's get real, we all know better than that. I didn't really make a “resolution” to do or not do something this year except for being wasteful. I want to be conscience of not wasting anything. Don't waste water or electricity, don't waste time and energy on people who don't deserve it, don't waste my time with the never ending what-if's that penetrate my brain, etc. Anyone know how to just turn your brain off sometimes? I need to know that technique. Geez.

And of course my main focus will be to keep Colby as healthy and happy as possible. He's such a good boy! He deserves so much better than the shit cards he got dealt. I'm debating on whether or not to send him to school during the winter months or put him on home hospital schooling. Of course the weather has been so warm it hasn't really been an issue yet. I don't know. We'll see.

Okay, that's all I've got. I'm looking forward to 2017. I think some really wonderful things could happen this year. May take some hard work and stepping out of my comfort zone, but hey, what else is new?!