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...
Wednesday, July 29, 2009
Tuesday, July 28, 2009
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.
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.
Saturday, July 25, 2009
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!!! :)
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!!! :)
Thursday, July 23, 2009
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!!! ;)
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!)
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!!! ;)
Friday, July 17, 2009
Long Weeks
Will woke up Monday with a sore throat. No other symptoms, just a sore throat...and every dysautonomia/POTS/mitochondria symptom out there. Called the doctor...the nurse said she would return my call on Friday. Um, is there a sick appointment we can make? I have a non-functional kid here. Nope. So Dr T called me this morning and promptly set up a protocol for the next time. No more waiting for four days for a return call. (She was not happy with said nurse.) :) After talking for about 15 minutes, I was grateful that I had done so much reading. I'm finally getting some level of understanding so the time spent on the phone was really productive!
While discussing Will's situation, we decided that it was time to start a medication to help support his blood pressure which drops dramatically when he has a "mito crash". (It was registered in one dr's office as 60/38 and he was still conscious.) I have a brand new sphygmomenometer (bp cuff) and stethoscope since both of mine died a couple of years ago. We have to take his bp every morning. When there's a drop, off to the ER we go for fluids. Hopefully, between fluids and a new medication, we'll be able to keep these crashes from occurring. Hopefully these lovely ER runs won't occur too frequently. If they do, then they'll put in a permanent port for him...not something he's thrilled about.
On that note...we are still fighting the insurance company for coverage of the high dose CoQ10. It's been a very long week with multiple phone calls...we should have an answer early next week.
As for the rest of life... I leave at 330 in the morning (4 hours from now) to take Andrew to the airport for the Belize mission trip. He's totally beside himself.
Will and I are preparing for Toledo. We leave a week from Monday. Please pray for strength for me. We are so blessed with the loan of a vehicle and with a huge financial gift which makes all of this possible...and amazing friends who are willing to keep the other children.
We have appointments Sept 23 and 24 in Cleveland at the mito clinic. We apparently are going to become really familiar with Ohio!
I'm off for a few hours of sleep so I can drive the taxi to Richmond.
Thank you for praying for us.
While discussing Will's situation, we decided that it was time to start a medication to help support his blood pressure which drops dramatically when he has a "mito crash". (It was registered in one dr's office as 60/38 and he was still conscious.) I have a brand new sphygmomenometer (bp cuff) and stethoscope since both of mine died a couple of years ago. We have to take his bp every morning. When there's a drop, off to the ER we go for fluids. Hopefully, between fluids and a new medication, we'll be able to keep these crashes from occurring. Hopefully these lovely ER runs won't occur too frequently. If they do, then they'll put in a permanent port for him...not something he's thrilled about.
On that note...we are still fighting the insurance company for coverage of the high dose CoQ10. It's been a very long week with multiple phone calls...we should have an answer early next week.
As for the rest of life... I leave at 330 in the morning (4 hours from now) to take Andrew to the airport for the Belize mission trip. He's totally beside himself.
Will and I are preparing for Toledo. We leave a week from Monday. Please pray for strength for me. We are so blessed with the loan of a vehicle and with a huge financial gift which makes all of this possible...and amazing friends who are willing to keep the other children.
We have appointments Sept 23 and 24 in Cleveland at the mito clinic. We apparently are going to become really familiar with Ohio!
I'm off for a few hours of sleep so I can drive the taxi to Richmond.
Thank you for praying for us.
Sunday, July 12, 2009
Oh My
I've spent the better portion of the week working toward understanding the information coming from Atlanta. Well, let's just say that it's like reading Ancient Greek...without a translation. Google is my friend. When we start talking oxidative phosphorylation, I get this lovely "deer in the headlights" look. Suffice it to say that there have been a large number of very late nights (when the house is quiet) of studying and reading and...well...crying. What a long week this has been.
The short answer is...there is no short answer. :) All I do really understand is that this is a progressive problem with no cure. There are supplements that are prescribed that slow the progression, so we're working with the insurance company to request that they cover them. Please pray for this because these supplements will be impossible for our budget to manage without help from our insurance company. (One of them is $180 per month and there is a nice long list of ingredients for the "Mito Cocktail.")
We're also needing to make an appointment at a mitochondria clinic...which of course is nowhere near Virginia. There are only a few in the country, so it's looking like Cleveland, Ohio; Houston, Texas; Boston, Massachusetts. Pittsburgh is an option, but it's not nearly as highly recommended as Boston and Cleveland and Houston. (We discounted Seattle and LA due to distance...isn't that a riot???)
As for the rest of our family's adventures...let's just say it isn't dull. I'm really ready to throw Plavix out the window...before I throw it AT someone. This drug is making me...unpleasant...and emotional...and exhausted. I'm so very done.
Will is symptomatic. And he is not sleeping well at all. Most nights he's still awake well after midnight...well after midnight. He tried carrying on a conversation with me at 2 this morning. Really, this was not one of his better ideas. :)
Btw, Will and I head to Toledo the last week of this month to meet with his cardiologist.
The short answer is...there is no short answer. :) All I do really understand is that this is a progressive problem with no cure. There are supplements that are prescribed that slow the progression, so we're working with the insurance company to request that they cover them. Please pray for this because these supplements will be impossible for our budget to manage without help from our insurance company. (One of them is $180 per month and there is a nice long list of ingredients for the "Mito Cocktail.")
We're also needing to make an appointment at a mitochondria clinic...which of course is nowhere near Virginia. There are only a few in the country, so it's looking like Cleveland, Ohio; Houston, Texas; Boston, Massachusetts. Pittsburgh is an option, but it's not nearly as highly recommended as Boston and Cleveland and Houston. (We discounted Seattle and LA due to distance...isn't that a riot???)
As for the rest of our family's adventures...let's just say it isn't dull. I'm really ready to throw Plavix out the window...before I throw it AT someone. This drug is making me...unpleasant...and emotional...and exhausted. I'm so very done.
Will is symptomatic. And he is not sleeping well at all. Most nights he's still awake well after midnight...well after midnight. He tried carrying on a conversation with me at 2 this morning. Really, this was not one of his better ideas. :)
Btw, Will and I head to Toledo the last week of this month to meet with his cardiologist.
Thursday, July 2, 2009
Mitochondria....Ugh
So, Will's newest diagnosis is totally beyond my grasp. So, tonight, I sat down and opened about 75 tabs on my internet browser, printed off about 50 pages that I can take with me and read tomorrow, joined a message board for parents of chronically ill children, and had a good cry.
So, if any of you feel like crashing your internet browser by having way too many tabs open, here are a few links for your googling pleasure.
umdf.org is the foundation for research and support of those with mitochondria disorders. Fabulous website.
mda.org A lovely bit of information is that mitochondria disorders fall under the umbrella of muscular dystrophy. Not a comforting thought, but it does open up some opportunities and help. It also allows Will access to the Make A Wish Foundation. Not something we need right now, but something to keep in that back pocket for when we get further down this rather ugly path.
There are several different types of mito disorders. Will is looking at Complex III, Complex V (the one that drives the bus, also known as OXPHOS). Neither of them is pretty. Some are worse than others. I'm not really sure where we are in that spectrum.
I also should receive a call back from Will's neurologist Friday. Beyond the prescriptions I've been trying to get for the last month and the letter for the insurance company so they might pay for the insanely expensive Coenzyme Q supplement (high dose CoQ10 that is the most bioavailable is available from only one lab.), I need to ask her about the Mito Cocktail of supplements that we may/may not need and ask why that wasn't mentioned... Please pray for that conversation...
So, if any of you feel like crashing your internet browser by having way too many tabs open, here are a few links for your googling pleasure.
umdf.org is the foundation for research and support of those with mitochondria disorders. Fabulous website.
mda.org A lovely bit of information is that mitochondria disorders fall under the umbrella of muscular dystrophy. Not a comforting thought, but it does open up some opportunities and help. It also allows Will access to the Make A Wish Foundation. Not something we need right now, but something to keep in that back pocket for when we get further down this rather ugly path.
There are several different types of mito disorders. Will is looking at Complex III, Complex V (the one that drives the bus, also known as OXPHOS). Neither of them is pretty. Some are worse than others. I'm not really sure where we are in that spectrum.
I also should receive a call back from Will's neurologist Friday. Beyond the prescriptions I've been trying to get for the last month and the letter for the insurance company so they might pay for the insanely expensive Coenzyme Q supplement (high dose CoQ10 that is the most bioavailable is available from only one lab.), I need to ask her about the Mito Cocktail of supplements that we may/may not need and ask why that wasn't mentioned... Please pray for that conversation...
Sunshine and Jeeps
So, I really think that Jeeps were designed by someone who was totally sunshine dependent. I mean, really, what is better than a beautiful day, a long drive, and the sunshine beaming right down on you? It makes for a perfectly lovely day. Add in the fact that you can't possibly carry on a conversation in such a noisy vehicle, and suddenly you get to either enjoy the music emitting from your very amazing soundbar, or you get to actually complete a thought because you can't possibly hear the children trying to talk to you! While I love my children talking to me, there are times when it's truly a beautiful thing to not have your every thought interrupted. :)
Add in the extra benefit of needing to outrun a storm because you really don't want to put the top on, and you have suddenly added adventure and a sense of daring into your lovely, music and thought-filled drive.
All told, it was a lovely, lovely day! :)
Add in the extra benefit of needing to outrun a storm because you really don't want to put the top on, and you have suddenly added adventure and a sense of daring into your lovely, music and thought-filled drive.
All told, it was a lovely, lovely day! :)
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