Monday, January 2, 2017

Hello 2017

Well, 2016 is in the books. Our family marked several milestones and endured several trials. In other words, we experienced life. Hopefully we emerged stronger and smarter. Well, stronger anyway.

On the debt front, we paid off $10,809.29. Not our best year, but a decent number nonetheless. I hope that younger folks who happen upon this blog have a moment where they realize how long it can take to dig out of stupid. Maybe it will keep them from making the same mistakes.

Our family's word for 2017 is hope. The first-ever treatment for DS's disease was approved by the FDA before Christmas. We are anxiously awaiting the drug company and insurers to sort out the numbers (estimated cost for the first year is $750,000). While the drug has not been tested on adults, there is HOPE that it will benefit them as well as the kiddos who have seen such remarkable results in clinical trials. After 23 years of living with a life-threatening disease for which doctors offered NO hope, we are overwhelmed and overjoyed.

DH and I spent the first day of the new year with our week-old granddaughter. If a new baby doesn't inspire hope, I don't know what does.

Time for a fresh start. Happy New Year, everyone!

Sarah
 

Tuesday, December 27, 2016

Our Christmas blessing




This sweet stocking stuffer arrived on Christmas Eve! She already has her proud grandparents wrapped around her tiny finger!

Merry Christmas and Happy New Year to all!

Sarah
 

Monday, December 12, 2016

An unexpected detour

Part of DS's Christmas present was tickets to a local production of "A Christmas Carol." (This show is amazing. It has been going on for 40 years and has toured internationally.) The tickets were for yesterday's matinee. That was the plan, anyway.

DH and I went to church in the morning - our boys attend a different church and DS1 picks up DS2 every Sunday. Always - always - I check my phone in between service and our life group. Always.

Except yesterday.

When I finally glanced at my phone, I saw a 2-hour-old text from DS1 saying we needed to go home immediately. He said his brother needed us. While grabbing the hubby, I was frantically texting back asking what was going on. He said DS1 had an awful stomach ache and had stayed home from church.

When we got home, we found his caregiver still there - two hours past his scheduled departure time, bless him. DS was as white as a sheet and grimacing in pain. It took me about 3 minutes to diagnose kidney stones so off to the ER we went.

Six hours later, my diagnosis was confirmed. I refrained from saying "I told you so" to the doctor.

The stone, which is still there, is supposedly small enough to pass. DH had to travel to the next town to find a pharmacy that could fill the prescriptions late on a Sunday night. For now, DS is not in pain and we are praying he passes this thing before Friday's graduation. Or before his last final exam on Wednesday.

This isn't his first bout with a kidney stone - one of the more unfortunate downsides of spending most of your hours in a wheelchair. I don't imagine it will be his last. He's a trooper, my boy. Instead of bemoaning the fact that he missed seeing the show he was looking forward to, he apologized for ruining our plans.

Just need to get through this week ...

Sarah
 

Tuesday, December 6, 2016

An exciting month!

It's December! That means DS graduates from college next week! As we were once told he wouldn't live long enough to graduate high school, this is a BIG deal. A really big deal. I sent out announcements and invitations to family and close friends and invited family to join us for the ceremony and for an early dinner at a local restaurant. The festivities begin at 1:30 next Friday, so I only expected our closest family who live nearby to attend.

Wrong. Cousins and children of cousins are taking off work and making the trip. I'm currently at 21 coming for dinner and still have several I haven't heard from yet. So it's going to be a budget-buster. But you know what? This is one of those times that I just don't care. We want to celebrate this incredible young man and we're not going to rain on his parade by worrying about a few hundred dollars.

The only downer is that DH's boss is saying he can't have the day off. Seriously? A couple of co-workers are banding together and vowing to get the work done for him. I know this is crunch time for the business, but sometimes there are circumstances that trump business. This is one of them. DH will be at graduation. Just hoping he will still have a job afterward.

An equally exciting event on the horizon is the birth of our first granddaughter!! DD is due anytime and is SO ready for the pregnancy to be over. With any luck, the little peanut won't arrive in the middle of her uncle's graduation ...

And it's almost Christmas! All my presents are wrapped and under the tree. I did the vast majority of my shopping online and got some pretty good deals. I do love this time of year and knowing I don't have to fight the crowds at the mall takes the stress off and allows me to enjoy the season.

Oh, and it FINALLY turned cold here! Well, probably not by many of your definitions, but I have to wear a jacket now. Sure beats the 70-degree weather we had up until last week.

Hope everyone is enjoying their December!

Sarah
 

Tuesday, November 1, 2016

Still here

Not sure where October went. I was mostly spinning wheels ...

Not much happening on the debt pay down. It's all sort of on autopilot and there hasn't been much extra to add. To be honest, I've lost that gazelle feeling and am not terribly focused. As long as it's still going in the right direction, I just don't have the energy to focus on it much.

Some major life changes are on the horizon. DS will graduate college in December and not sure what he will do next. He is trying to piece together a few small jobs and volunteering to fill his time. I worry about him losing a social circle when he's not on campus anymore. It's tough when your chair prevents you from going to friends' houses and they're moving on, anyway.

He found out last week that when he graduates he will lose funding for 30 hours/week of caregiving. Those are his daytime hours. He has a young man who drives him here and there and helps him out with whatever. He is crushed that this will be gone because it means that he will have to totally rely on me, which I think makes him feel guilty. As we already pay out of pocket about $15,000/year for caregivers to get him to bed, get him up, showered, dressed, therapies etc., there's nothing left in the tank to replace his lost daytime hours.

Insurance denied a new wheelchair for him so now I'm in full battle mode. His current chair is falling apart and because  he has gotten so much weaker in the past few years, it is difficult for him to maneuver. He desperately needs a whole new system better suited to his abilities.

We had a hurricane blow through here a few weeks ago. Left us without power for four days. Thankfully, a friend lent us a generator so we could charge the wheelchair. I lost all the food in the fridge/freezer, but it wasn't full, thank goodness. I had skipped going to the store to stock up - which turned out to be a good thing.

Can you tell I'm frustrated?

OK, enough whining. A lot of people have it way worse than we do.

We are less than two months away from meeting our first granddaughter! DD is doing great. We had her baby shower this weekend and, despite all the family drama, it turned out to be a lot of fun. She got so many nice things - people were so very generous. We are ready for a new baby around here!

It's still in the 70s/80s here and the leaves haven't turned so it doesn't much feel like fall. But November is one of my favorite months and I'm ready for a fresh start on the calendar.

Happy Fall, y'all!

Sarah
 

Wednesday, September 28, 2016

Finally Fall

I have been waiting for fall since July. I'm still sort of waiting - but the temps have dipped into the 80s in recent days. What I'm really looking forward to is no longer hearing the A/C running!

A week or so ago a problem with a gas pipeline in Alabama caused a bit of panic in my parts. Prices went up, pumps went dry and people went nuts. For years, our local government has been debating the value of installing a light rail system. I'm hoping this will push them to quit talking and start doing.

We pushed the button on a new wheelchair for DS. We've done our part. Met with vendor. Had him evaluated by OT/PT. Got his neurologist to sign off on all the needs. All letters of necessity written. Everything submitted to insurance. And now we wait. I'm told that because it's all done electronically now, the wait time is reduced from the last time we went through this. Hope that's true.

Extended family drama has taken up some of my time. Two members of my family got together with DD's sister-in-law and decided to throw her a baby shower. They divided up duties ... and then the two in my family bailed at the last minute. So DD's mother-in-law and I are stepping in to help by providing the food/cake. DD is upset because she wanted the two of us to be able to sit back and enjoy the shower. I have been reassuring her that we will have a great time and none of this will matter. Gotta love family.

Hope everyone is doing well. I read your posts, even if I don't do a very good job of keeping up with mine!

Sarah
 

Wednesday, August 31, 2016

Summer's end ...

It's the last day of August and DS is in full swing with his college classes ...

Summer is over.

I love summer. I love the lack of schedules and the chance to have some guilt-free Netflix time. DS and I got into a regular library habit to keep us busy. I've read probably 15 books since June. I made homemade ice cream, got to spend time with my daughter and soon-to-be granddaughter and made sure to be thankful for A/C. Older DS was less visible due to a seemingly serious girlfriend who entered the picture some months back. (He's still my sweet and thoughtful boy, though - called me on the spur of the moment last week and invited me to lunch - his treat.)

We took care of some house projects. Painted the dining room, cleaned out the attic and did a lot of decluttering. The roof and gutters were replaced and we had a ceiling lift installed in DS's bedroom and bathroom. We did thoroughly neglect the yard. I have horrible allergies and DH is apparently allergic to yard work. DS1 used to take care of it for us but then he went and moved out. ...

All in all, it was a good few months. No serious health issues since my surgery in April, which was a nice respite.

Financially, it wasn't the best. The projects cost a lot of money and there were lots of little expenses that needed to be tended to, in addition to DS2's caregiving expenses. This year is definitely not going to be a great one when it comes to debt payoff. But we are staying the course ...

I am hoping that by declaring the end of summer, the end of the insanely hot weather will be disappearing as well .... Hope springs eternal.

Sarah