December has rushed in the door in a hurry. We've had some spotty snow flakes but nothing that screams normal December.
We braced for a busy month. We had Addison Lou's 4th bday party on the 13th and we all had a ball. We have a jump house place in town now and that combined with someone dressed up as Minni Mouse, a frozen cake and lots of laughter added up to one fun party. So odd to think that almost 4 yrs ago (her bday is actually Dec 20th) we were all exhausted, huddled up in the hospital, a light snow covered everything waiting on Kim's little Miss to make her appearance. I remember it was almost 9pm, I was looking out the window watching the snow fall and just missing Kaya so much..when they hollered and said the baby was here. Holding that little bundle sure made all that wait and worry well worth it. She's growing into a beautiful little girl full of spunk and sass..a little mini me of her Mom. I love seeing how Kim's eyes light up being a Mommy and having both of them in our lives :)
We also have been bracing ourselves for this week. The fun thing is Kaya's party is this week and we are room helpers. The part that makes me nervous is Steve's apt.
We have had 3 sets of MRI's this year. We've researched, read, listened to and have been on pins and needles since Nov. Dr B ordered a full MRI scan in Nov (almost 4 hrs of fun for poor Steve...flat on his back and not moving. I got the lovely rickety chair that makes my butt go to sleep lol) but we wouldn't know the results until Dec 17th. Usually she calls...we've not got that call. His shots expired and we had to make several calls for a refill..which made me nervous. Add in the drug company calling and wanting to talk to Steve about alternative medicines he might want to take. Nerves are here for sure. As well as Steve has had some issues....his finger is moving on its own, he's been very tired and he fell out of bed one Saturday because his back wouldn't straighten out.
We have 3 options that may happen.
Option 1:
Nothing alarmingly new shows up on the MRI. Same general amount of lesions, no new ones. Steve will stay on his weekly MS shot, his monthly b12 and assorted vitamins and herbs. Pro: No fighting a new copay or side effects from meds. We know pretty much the course. 6 mo before another checkup. Cons: Steve has been fighting this feeling of ...that we pay for "snakeoil". He's relapsed twice on this shot but what would happen if he didn't take it. What are all the MRI's doing to him, what can stop relapsing and what is the shot really doing to his insides? All common questions and feelings. We are basically 3 yrs deep into this...we know what can and can't happen.
Option 2:
There is some change on the MRI's or actively working lesions that haven't been there. Not tons of damage just enough to warrant a little boost. Steve will stay on his normal regimen and add in an IV bag at the hospital monthly. Pro: The Steroids build up his system, makes him feel perkier and are painless other than sitting for 3hrs while the bag empties. Con: expensive, aftertaste for Steve is horrible, reworking schedules (and unless my Mom is off...no one really to help with Kaya except my sis in law) and the fear Steve has that he'll have issues after taking so many steroids. He's had 3 rounds of them in 3 yrs give or take.
Option 3:
The last option is the scariest. It means that there has been visible damage done since his last MRI about 6 mo ago. It will also mean an active lesion is causing some problem. Steve will have to change medicine. He'll go to a 3 times a week shot as well as his monthly b12 and vitamins/herbs. We are very nervous about this option because 3 shots bothers Steve only in the sense of constantly finding a spot that isn't sore from the week before..imagine doing that 3 times a week! Pro: A new way to attack MS with a possible decrease in relapse and lesion formation. Con: Cost...5000 before insurance and insurance isn't sure what they will cover as well as we may have to find a new copay program. Side effects...they range from mild to severe and in the back of my mind I think how hard Steve struggled with his Avonex shot. 2 months of the flu, edginess, sickness.
So many people are uneducated on the disease and that makes it hard. I will admit before Steve had it I knew what it was generally but not personally or fact wise. I never realized that if the disease decides to attack a nerve ending in Steve's brain that controls his heart or lungs..he can die in his sleep. Maybe I realized it but I never thought it out in that way. I've always made it very clear that I have to be strong..and that is true. I can't sit back and feel pity for him, for us. I can't stress over every ache, every bill. I can't break down and cry all the time. That serves no purpose and only stresses Steve. Stress then increases his body issues and he doesn't need that..and I honestly am not a break down person. We have prepped Kaya for this appt. She knows that Daddy may change medicines but that he is ok. So basically all we can do is hope for the best come the 17th and if we hear bad news...we digest it, talk about it and suck it up and get over it lol We've learned a sense of humor, not dwelling and stopping to breath helps more than anything
No comments:
Post a Comment