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, well...you'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. :)

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!

Home

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!

Homeward Bound

Will got to bed insanely late last night since I was dealing with the co-op order, so I let him sleep as late as he needed this morning. Well, by the time the child finally awoke, he felt infinitely better than yesterday, but I was famished! He showered quickly and we headed to Bob Evans, his new favorite restaurant. :)

We purchased a card game at the zoo yesterday called, "rats", which apparently resembles ERS (not that I would know) and we played it while waiting for our breakfast while I finally enjoyed a really good cup of coffee. Will won, to the amusement of the older couple beside us. The gentleman asked Will if he had cheated. :)

We did head back to the zoo and had a really good time. We meandered really slowly which was good since there were several rainy downpours. Fortunately, they all occurred while we were in buildings or under shelter. The sun finally came out but the temp had cooled.

We watched a family of monkeys interacting. They were so cool. There was a 7 month old monkey, his older sibling, and the parents...They were totally astounding to watch...their communication, the way the little one challenged his boundaries, they way he grabbed hold of his mom as she swung by him. They were fascinating.

We also saw hippos (They have big bodies and little legs!) and a training session for the two African elephants. The trainer actually tossed a ball to the 6 yo male elephant; he picked it up and accurately tossed it back...they blew water out of their trunks on demand, flapped their ears, swayed back and forth...it was truly amazing. The head trainer was chatting right behind me and stated that the mother, when younger, would stand on her back legs and slam a frisbee. Very cool. Very smart!

We went to a Toledo favorite for dinner...Tony Packo's. For MASH fans, it was the restaurant the Klinger mentioned 7 times during the run of the show. Several people told me about it, so I thought it would be cool to do something Toledo-like. We were seated in the bar area (the place was hopping!) and had a really gracious server. She chatted with Will and gave us samples of German potato salad because she wasn't sure if we would like it. We tried fried pickles (I did say tried!), had their famous hot dogs (yes, twice I get to shock you!), but the best part was the cabbage roll. It was so good...like my mom used to make and I wish I could replicate. We ordered an apple strudel to go (not as good as if it were warm with ice cream!), but it brought back some really good memories.

We headed back to the hotel for a run (yay! Finally!) and a swim, then up to pack and get Will to bed. I am sitting here in the dark so he can get his beauty rest while I update everyone.

We head home tomorrow morning. Marcia and kids will arrive here at 830 for our long trek home.

Thank you for your prayers and for the encouraging comments...

Toledo

Well, the trip was long, but the company was wonderful. :) We finally arrived at the hotel around 11 last night and unpacked. Will's night meds were really late, so I knew it was gonna be a bit of a hard morning.

It was. He woke up with really low bp. He was really feeling badly, and rested on the table for the majority of the dr visit. We saw Bevery Karabin, the nurse practitioner. She was really delightful and took plenty of time with us. She confirmed the medication changes that Dr T had recently made, but warned us that Will's potassium needed to be checked regularly and sodas needed to be limited. The sodas aren't an issue since we mostly drink water, fortunately.

The rest of the visit was a lot of "code"...her trying to discuss the situation without openly discussing the situation. Basically, on the first visit, it was presumed that the autonomic dysfunction was a primary diagnosis. Thus, they weren't concerned with it being progressive (degenerate). Well, since it really is a secondary diagnosis to the primary diagnosis of mitochondria, we are back in the degenerate/progressive end of things. The very nature of mitochondria disease is that it is progressive. The huge unknown is rate of progression. She recommended we see Dr Cohen in Cleveland. We have an appt with his associate in September, so tomorrow I'll call and see how long the wait is for Dr Cohen.

Will was feeling pretty awful, so we headed back to the hotel for a little while, then got some lunch. I do believe this child is gonna turn into a hamburger or onion ring. :) He is taking every advantage of restaurants to get his favorite food on this trip! After lots of rest and some favorite food, we headed to the zoo for a brief visit. It closes at 5, so we were only going to have a couple of hours. We had purchased a membership to the National Zoo because it had a reciprocal agreement with Toledo Zoo (one of the top ten zoos in the country), so we only had to pay for parking. Woohoo!

Will got to see a polar bear swim around in the pool, find, and eat a fish. It was pretty cool to see this huge bear fishing for this itty bitty fish! (Yes, I have 5 boys so this is very cool stuff!) The other bear in the exhibit had a really red foot...it looked like he had really hurt himself. Well, come to find out, they put some food in red jello and fed it to the polar bears. The bears were apparently not fond of eating the jello, but they did like to roll in it! Blah!

We were able to ride a mini train around the African safari area which was cool, and we rode a carousel. By this point, the storms were threatening, and the zoo was preparing to close, so we headed to the car. Back to the hotel. Everything we had talked about doing was outdoors, so this put a huge damper on the plans. No swimming was possible, either. So we talked with the front desk and settled on a matinee of G-Force, 3D. ("I am like Dale Earnhart, Jr with fur!")

We are now back at the hotel, the co-op order is submitted, and I am totally ready for bed. Will has managed to read three books on this trip, so my chatty little guy is pretty quiet. When he finishes his last book, I am going to hear plenty, I'm sure! ;)

The weather tomorrow is uncertain, so we have no current plan. Having time to consider what the dr said as well as have some rest is a welcome reprieve.

Toledo Bound

So, we're packing up and heading for Toledo Monday morning. Kids are packed (except for meds and toothbrushes) and beyond excited to spend the week with Randy and Erlene. Will is packed (except for meds and toothbrush). My clothes are in the washer and I'm putting all of Will's medical files in a nice neat notebook (which I shoulda done like a year ago!). We're almost organized which is totally scary. :)

So here's my dilemna...I've been asked if I would be interested in speaking at next year's HEAV convention regarding homeschooling and chronically ill children. I have the resume', but do I have the time? Is what I have to say worthwhile to someone else who is similarly struggling or to someone who wants to help someone similarly struggling? (Don't concentrate on the poor grammar here...) ;) And if so, do I have time to write the "speech" and record it before Sept 1? Ah, the questions abound...

Here's my second dilemna...Since I'm simply awash with spare time and financial resources (NOT!), I actually considered running in the mito 5K in Cambridge in September. I realize this is a pipe dream, but it would be really cool to do it as a fundraiser for the organization so they can in turn help research mito and support the families out there struggling...A girl can dream, right? It would be so nice to feel like you can do something to fix the unfixable...which I realize is ultimately in the Lord's hands, but for those of us who like to DO something, well...

Yes, this is a totally rambling post that most of you probably won't care about, but it's all part and parcel of my current thought processes. Maybe it's my version of escapism after a really ugly week? Don't know...

To Toledo...and beyond!!! :)

Is it Monday???

Oh what a day.

It started off with researching Cleveland and finding a hotel on the Clinic property. Ha. Their patient rate was more expensive than their AAA rate (which we recently joined since I drive an older vehicle - love my '88 Jeep! - and I drive all over the US to dr appointments.) and that rate was still astronomical. It's close to the clinic, which is helpful, but convenience comes with a price. Um, if Cleveland is a frequent vacation destination for the Colemans, then we need to learn to drive through the city because we're not gonna be staying on campus very often!

I took Caroline to physical therapy and her adored therapist is leaving! He's totally amazing with Caroline and gets her to do amazing things (I wanna see each one of you plank and push up as much as she does in an hour!) and he's leaving to help set up a rehab center. While sitting in physical therapy with Caroline, I realize that Will isn't doing so well. They lend me a steth and sphyg (bp cuff and stethoscope) and I take his bp. (Yes, I know how to do that!) It's 80/50. Oh. Well, whatever we had planned for this evening is now off the table.

Chelsea has delivered Chloe to me (she and Ro are headed to the beach for the weekend and we get Chloeworm!). Billy gets the "Can you meet me at the ER to take the kids" call. I walk out to the van and my cardiologist calls. Good grief! Well, ok. That call was good. Other than the fact that my lab work was a bit weird this time and I get to repeat it ...next week... as usual... I actually get to stop the Plavix at the end of next week! Woohoo! He talked with the world renowned guy who does PFO closures and was told that 2 months was sufficient. Well, ever the conservative one, Dr Lotun agreed to let me come off of it at 3 months. (So, yes, that was the silver lining in my day!)

So, the long and short of it was that it was a long day culminating in a visit to the ER, which even there, the doctor was phenomenal and handled Will fabulously (and thank you Dr Teasley for calling and paving the way!)...and although it looked like they might keep Will overnight...we were able to come home and sleep in our own beds. Which is where I'm heading now. As the ER doc said, "You will be spending a fair amount of time in ER's and hospitals, so if we can avoid an admission tonight, we will." Love this doctor. (When he walked in, he said, "You know more than I do about mitochondria, so tell me what you know." This guy immediately had MY respect!) I am grateful that Will's body stabilized with one bag of fluid. Welcome to my new normal.

The good news is we have a protocol. Bad news...that protocol means a fair amount of ER trips. But for tonight, we are home and not sleeping in a really uncomfortable bed in a very noisy hospital.

Not to self...put a sweater in each and every vehicle. The ER is freezing cold!!! ;)