I have been revisiting the reason behind this blog, and one of the most important ones to me is sharing our story so that other caregivers in similar situations won't feel alone.
I would like to write more essays, I would like to reformat and have less pictures, but for today I am going to try to catch you up!
Virginia is still healthy from a pulmonary perspective, but her scoliosis is getting worse. I have spent the last four months researching, trying to figure out a way to head this thing off at the pass, trying to be proactive.
Some doctors think Virginia could handle spinal surgery to use rods to straighten her back, some don't. She is holding steady at about 30 degrees, so we don't have to make a decision yet. We go back for more x-rays in February. Findley and I generally feel that Virginia does the best when we leave her alone. Medicine doesn't have a lot to offer in certain situations, and unfortunately ours is one of those situations. But the day may come when we have no other choice but to have rod surgery.
Her scoliosis has made positioning more complicated. We picked up her new chair on July 2 at Scottish Rite in Atlanta, and of course they had ordered the wrong size. (We had only been waiting for it since January!!) Findley had to build one, using parts from her old chair and the new one. We were in a room the size of my laundry room, had all three kids, favorite babysitter/fourth child Rachel, a physical therapist, and the wheelchair rep. I just wanted to get out of there. And 5 hours later, we did. I thought the chair was going to work, but long story short, it didn't. Not Findley's fault- he did the an amazing job with what they ordered. If he hadn't been there (and Mom and I almost went without him), I would have flown home with V in my lap.
Turns out Virginia's scoliosis had progressed to the point that she needed a custom, molded chair, so we went back to Atlanta in October to be fitted for it.
Mom & I took her back the day before Thanksgiving to pick it up. The new chair is definitely better at supporting her back, but it's not perfect. Virginia wasn't quite herself on New Year's Eve and we realized that she had an abscess on the back of her leg, caused by contact with the chair. We (Findley, Mom, Dad, Uncle Harold, and I) have worked on the chair no less than 30 hours since we brought it home, trying to get it right. I don't think there is a better product out there for us, I just think everything about Virginia is very complicated.
Findley's company switched insurance carriers in September and it has about done me in! I knew the ropes at Blue Cross and they knew me. I loved them. I could literally write thirty pages on the issues I've had with our new insurance just in four months. Ridiculous stuff...like refusing to pay for her meds to be compounded, even though she can't swallow & they have to go through her g-tube, and sending me a letter informing me that they would only pay for half her baclofen (her jaw gets stuck open and she screams in pain if she has even 2.5 mg less), and saying that her stander (which keeps her hamstrings stretched so she can SIT) is not medically necessary.
I hate wasting time, which is what dealing with insurance feels like. And as annoying as waiting for the Sears service man to show up four hours late can be, it doesn't feel personal. I realize it is business to the insurance company, but it's personal to me.
There are many days I feel that I am fighting to keep Virginia alive. And on those days, most other things seem trivial. I was early to pick up Wills from school, and the kids hadn't come out yet. It was the perfect ten minutes to return a phone call to a pediatric orthopedic surgeon I really trust. He is our old neighbor, and knows Virginia better than our new doctors. As I'm listening, a mom comes up to my window, wanting to know if I've contributed to the annual fund. Poor woman, she never had a chance. They've sent home notes and emails. They've called us. Yesterday Wills came home wearing a sticker. Can't I have ten minutes of quiet in the carpool line? Nope, they knew I was trapped. The thing is, if Virginia were healthy, I would be that mom going car to car, raising money for her child's school. Instead, I'm the mean, exhausted lady in the wheelchair van who is totally annoyed that her child's school asked for money, again.
The consistency and intensity needed to care for Virginia seems to be increasing. As Findley said the other day, we can't afford to make a mistake. Forget to charge her feeding pump, and she won't get to eat. Forget to go by the pharmacy, and she won't get her meds. Forget to reposition her in the night, and she will throw up and aspirate. It's always time for a change, time for meds, time to be stretched, time to bathe, time for a drink, time to give her a change of scenery...and there are days when I do this really well and with a lot of energy. And then there are days when the thought of lifting her out of her chair and putting on her pjs is more than I can bear.
Each one of us has something in our life that we feel like we can't bear any longer. But then the sun comes up again and we get a new start. God's mercy in the form of a new day, a new year, an old friend, a hot cup of coffee..... Taking it a day at a time and putting out the fire closest to me is really all that I can do right now.
Somehow taking off my "big picture" glasses allows me to see small, joyful moments that I otherwise might have missed. And all these little moments do make the big picture more beautiful...I just have to remind myself to see them.
So I'm promising to write more in 2015, and here is how we finished off 2014....
Eliza turned 5! Peabody Hotel tea party (maybe would have been better when she's 15, but live and learn...and I needed a hair cut...)
Virginia turned 11!!!
Both my girls got glasses
Boys canoed the Ghost section a few times this fall
Harry Potter I & II... funniest Snuggy ever
Wills loved his costume so much that he wore it everywhere for about a month...
Lots and lots of Grizz,
The WORST trip to Disney ever. I actually had a premonition it would be bad....but we went anyway. We all had the stomach bug, it rained the whole time, just overall rough. This sums it up.
There were a few happy moments. Findley took Wills to Harry Potter world while we were all dying, and he loved it,
On the last day, Eliza felt well enough to meet a few characters. It was really sweet...made me sad she had been sick the whole time!
Virginia seemed to enjoy the plane...seriously, this is about the best pic I have of her over 7 days!!
And speaking of planes, it is a nightmare to travel with Virginia on a plane. In the airport in Orlando on the way home (so I'm literally already about to kill somebody after the worst week ever) we had the TSA agent from hell. She wouldn't let me take Virginia's Boost through because it's a liquid. I had all the paperwork I usually have, but she kept asking how she could know it wasn't a liquid explosive. Seriously. It's her food!!! And I can't buy it on the other side of the security check point, so I have to take it with me. Finally I just said, "Fine. Keep it. But if we get stuck on the tarmac for ten hours and she starves to death, I'm coming back for you" and then the TSA agent said I was threatening her. I said it jokingly, but TSA agents obviously don't appreciate humor. So then Findley got mad at me for joking with her, and he and I got in the fight of the decade. I don't think we spoke for the rest of the day. At one point there was turbulence on the plane and I thought, "If the Captain told me the plane was going down, I still wouldn't apologize."
So....I finally gave in to something Findley has been wanting for years and we will not be flying anymore! Road trip? We have room for friends!
We continue to spend tons of time on our porch,
Putting all Nana's quilts to good use,
Santa brought Findley a pizza oven. Look out, Frank Stitt. (And one more reason to have a fire and be on the porch..)
V's favorite Santa gift was her Muppets Puppets...Wills does them best!
Our whole crew
We are all in love with this little lamb. I dream about him when I haven't seen him in a few days.
Down time by the lake,
And Findley finally talked me into putting ALL the things he loves most in the Christmas card...