Wednesday, August 26, 2009

Time flies when you're...

Hmmm...3 weeks since the last post? I am such a slacker!

I had not seen Erlene in two weeks, so today we caught up on all that transpired. She said that she felt like she hadn't talked to me in a year. Somehow I fear that a couple of weeks in our life is like a year in someone else's. :)

The short version...

Will ended up with pneumonia within three days of the cold starting (read previous post). It was a long week.

Will is now 13! Woohoo! Caty and Andrew were able to secure enough Kings Dominion tickets for all of us, so all 13 of us went there for Will's birthday. We had a wonderful day...the weather was really gorgeous. All the kids had managed to get the day off, only Billy received a letter calling him in for jury duty. He wrote a fabulous letter to the judge explaining the situation (chronic illness, birthday, entire family...) and the judge was gracious and excused him, so even Billy was able to go!

Chelsea and Chloe were here for a little over a week. Chelsea, Caty, and I have instituted a monthly night out. We were supposed to see Craig Morgan in concert in Fredericksburg, but the weather was really iffy, so we bailed on that and went out to dinner and to Carl's instead. We had a great night and stayed dry. :)

I have officially been discharged from two of my three cardiologists and am no longer on the horrid Plavix for which everyone in my life is very grateful. It was a very long three months!

You can actually walk through half of my basement which is nothing short of miraculous and represents a lot of hard work. :) The other half might actually get done this week, but that might take another miracle.

Will saw his gastroenterologist and doesn't have to go back for a year! Whoohoo! One of the meds for his autonomic dysfunction has had the added benefit of helping the gi issues (which we realize now is also part of the autonomic issues) and since that appears to be stable, we get to go to annual maintenance. Unbelieveable. A year ago we were talking about feeding tubes. Modern drugs are not so bad! :)

We were blessed with a day at the beach with some great friends...the kids actually got to see their friends, as did I. It's been a long, very lonely summer for all of us. My kids experienced jelly fish for the first time...that was exciting. Not.

I am running again! I conquered a 3.5 mile run last week so I finally feel like I am getting back to something that resembles normal...There was no running this week due to too many schedule conflicts, but I'm hoping to rectify that next week. I just might get to run that 10K in October. That would be so very cool.

For those of you who haven't seen Chris this week,'ll have to find out for yourselves.

Billy is still working insane hours. I'm still struggling. The kids are needing school to start, but I sorta need to find the tops of tables before we can go there. Hmmm...tables. Are there really tables under all that stuff or are those piles simply suspended in midair? I guess we'll find out...after we find the basement floor! OR maybe I'll just pretend it all away and go the the beach for the day. We'll just steer clear of those jellyfish. :)

Wednesday, August 5, 2009

Groundhog Day

Is Groundhog Day in February or is it really in August and no one told me they changed it? I feel like I awaken with a plan and in ten minutes, that plan and about four others are shot to pieces and I simply end up hanging on to a very thin rope with a fraying knot at the end and praying that it holds til the end of the day.

Top it off with Will starting a cold, at least I think it's a cold. He's really stuffy and now he's tachycardic. We have an appt with Dr Teasley at MCV tomorrow afternoon...which either gives us time to get through the ER before seeing her, or he miraculously feels better in the morning and we can work on my first plan for the day...or not. :) He's becoming lethargic and dizzy and... Welcome to mitochondrial disease! The new normal is a weekly ER visit.

Which brings us to the new dilemna...with weekly infusions (IV fluids), the recommendation of a port is going to become a topic of discussion. Do we put in a port or do we not? Given a mito patient's issues with infections (their bodies don't handle them well), will a port help or be yet another problem? I remember when the decisions were along the lines of, "Do we sign them up for soccer or baseball?" Those were much easier decisions with lots fewer consequences.

We still have Chloe, who has decided that I really am not a potted plant, which, btw, is very cool. She gave me a huge hug this morning and actually took her bath this evening without screaming! Chelsea called and asked if we wanted her to pick her up tomorrow, and I am like, "Um, I just bought her soy yogurt and almond milk and I got a vegan cookbook from the library (ok...Billy picked it up!), so maybe by Sunday??? :) However, she may eat Fredericksburg out of blueberries, so she may have to head to Charlottesville at that point. The child devoured a pound of them at lunch! We have to hide the blueberries or she will eat all four pounds in one sitting!

So, it's been a long week. I have my granddaughter which is a silver lining. Will is unwell which is a huge cloud around that silver lining. But the kids are sleeping, Andrew is on his way home, and I am heading for bed! Before midnight!

Tuesday, August 4, 2009


Yes, we did actually make it home! We arrived home a little after ten Thursday evening having stopped by Pancho Villa for dinner and a greatly enjoyed margarita. :)

For a quick update...Will started a new med to boost his blood pressure. It seems to be working, but he looks a bit...chipmunkish. :) The medication causes the body to retain sodium which in turn causes the body to retain fluid which boosts the blood pressure. Well, he has plenty of fluid in those cheeks! He looks like he gained ten pounds!

Saturday, Will started his new supplements. (Did I mention that Steve at Goolricks totally rocks???) The insurance company is willing to pay an insanely large sum of money to cover one of these supplements, and Steve is willing to compound it for Will. Unfortunately, this medication is apparently insanely horrid to taste. So, please pray for William to either adjust to the taste or to at least be willing to take it without a battle, because right now, he is very UNhappy with his current distasteful lot in life. These supplements are really important in the slowing of the progression of the disease, but fighting William three times a day is going to get old really fast. So maybe you should pray that I don't grow weary of fighting? Um, can we just pray that William takes them without massive complaining instead? :)

We have Chloe once again (I picked her up this evening) since Chelsea now appears to have the flu. We're thrilled, she's uncertain, and Chelsea is just miserable. :)

I'm off to bed. It's already tomorrow. Ugh!