Wednesday, December 30, 2009

Heading Toward Home

This does not go down as one of those trips you want to do all over again. Right now I just want to curl up with a blanket and sleep for a week.

We saw Dr. Crone. Talking with him is like talking to your grandfather. :) He is honest but kind. He requested a timeline of events of the last few years. It really made me realize how much Will has deteriorated just this year. When you live it, you realize how difficult it is and how far he has progressed, but you don't really realize how fast this occurred. Dr. Crone agrees with Dr. Cohen that this rapid progression may indeed be a result of a compression of the brain stem and that pressure needs to be relieved.

The process of relieving the pressure: We are due to return sometime in February for two full days of testing and visiting with numerous specialists involved in the surgeries, of which there will be two. At the end of that two days, the doctors will meet to discuss whether the surgeries move forward and, if so, exactly what that would look like.

Background info:
Parts of the first two vertebrae were removed during the first Chiari surgery to make room for his brain.

If the surgeries move forward, which is to be expected at this point, Will would then (in February while we are there), have the first surgery. Since some of the front of his skull now needs to be removed to alleviate the pressure, the vertebrae in the back need to be strengthened so that his head has sufficient support, so they would fuse those first few vertebrae.

After several months of healing, we would return to Cincinnati for surgery number two. This is the ugly one. They would need to go in through the back of the palate to remove part of the skull in front of the brain stem. As Dr. Crone put it, "This is a massive surgery" and would require coordination with multiple specialties. He would have an ng tube (a tube through his nose for liquid nutrition) for about a week, may end up with a temporary tracheostomy, his tongue may have to be split, and/or his mandible (jaw) may have to be divided. Not a little surgery.

Will knows the highlights, but not the details of this process. Dr. Crone sent him off for orthostatic blood pressures while he discussed the details of the procedure. We filled Will in on the highlights, but have chosen to wait on the details until they become a certainty. We should have more information in February when the decision to move forward is made.

Will this cure Will? Probably not. The thought at this point is that it will stop the progression of the autonomic dysfunction, but most often the symptoms created by the pressure do not generally improve. Stopping the rapid progression is certainly at the top of our list, so if the specialists agree that we should move forward, then that is the course of action that will most likely be taken.

We obviously appreciate all the prayers and support that everyone has provided. From taking care of our children on zero notice and willingly keeping them when uncertainty of our return date occurred, to praying for us, to helping to financially manage this trip. We are blessed beyond belief...The Lord IS our comfort and our strongtower. Without Him working through all of you, we would have been in a heap on the floor long ago.

Cincinnati Bound

Dr. Cohen talked to Dr. Crone who talked to his secretary who called me...all in about five minutes. :) The end result is that we have an appointment in Cincinnati at 1230 today.

Will's labwork was incomplete upon our departure, but Dr. Cohen said he would call us later. Will's case is a bit complex so sorting it all out is going to take some time.

So, the information as we know it is that Dr. Cohen is convinced that Will will require surgery to remove the pressure from his brain stem. Once that happens, it will be a waiting game to see how much of the autonomic dysfunction disappears and how much remains. There seems to be little doubt that the surgery is required.

We are currently enroute (4 hours) from Cleveland to Cincinnati. Gotta love technology. My blackberry (which is functional again!) is tethered to my laptop allowing me internet access. Having a techie for a hubby has unexpected benefits. :)

I should be able to send an update sometime this evening.

Tuesday, December 29, 2009

Cleveland Update

Sorry for the lack of communcation. We return to see Dr Cohen (for the third time) in a few minutes, so this will be quick.

We arrived safely. The last bit of the drive was in snow, which was supposed to drop a trace of accumulation. Clevelanders run on different measuring devices than us Southerners because we got 6 inches. :) It has been unbearably cold with strong winds, but what they lack for in outside temps here they more than make up for in the warmth of their treatment of us.

We saw Dr Cohen yesterday morning at 8. He spent about 2 hours with us. He set aside the whole mito diagnosis and took a detailed medical history. Fortunately, I had requested discs of Will's MRI's related to his Chiari; they were of huge interest. Dr Cohen did loads of labwork (the tech gave Will juice afterward because she drew so much...she was a riot!). We did have to convince Mary Washington Hospital to overnight to us the disc with Will's two additional head MRI's, and they arrived safely at 8 this morning.

We returned to Dr Cohen this morning. The mito lab work won't be back for a month. The other lab work created the need for yet more lab work. Essentially, he's looking to see if there is diabetes or pre-diabetes due to ketones being spilled in the urine. He also talked with one of his favorite neurosurgeons and here is where it gets a bit...painful.

The short version...we see Dr Cohen again in about half an hour. He is chatting with a doctor in Cincinnati who specializes in Chiari's and in brain stem surgery. The basic presumption here is that a good portion of Will's autonomic dysfunction is likely caused by pressure on his brain stem. Prior to his decompression, there was no kink. Now there is a significant "kink". The brain stem should be nice and straight and Will's is not.

So, we are now adding vitamin C to his regimen since it helps the Complex III mito issues. We are waiting results on the mito bloodwork. We return to Cohen in half an hour to hear the results of his conversation with the doctor in Cincinnati and determine when we have to go there. (We really like touring Ohio!) We should also have the new blood work back and hopefully have a few more answers.

So this hasn't turned out the way I thought it would. It is extremely overwhelming to consider that we are facing more brain surgery and nowhere near home. And we pray that we aren't looking at diabetes to add to the fray.

Will is managing. He is obviously not thrilled at the moment. We are so grateful for the Lord's provision of this trip...and hopefully answers...or at least more of the right questions???

Will update as I can.

Saturday, December 26, 2009

Where do I begin????

This is gonna take a grab a cup of coffee!

I was graciously informed by Billy's mom that I had not updated this blog in a timely enough fashion, but I've been insanely busy with negative progress. Really.

So, five months ago we made this appointment with Dr Cohen in Cleveland. Immediately thereafter, I applied for an Angel Flight. (Pilots with their own planes donate their time and resources to transporting chronically ill kids to distant medical facilities.) We were approved and scheduled. Someone offered to take the younger kids. Then out of the blue, a friend's brother donated an airline ticket so Billy could join us in Cleveland. Even the money needed to make this trip happen (hotel, rental car, food...) was miraculously provided.

And then came this past week...and I watched my lovely, detailed plans unravel before my very eyes. I am so not in control and the Lord apparently needed to remind me of that little detail.

So let's back up to Wednesday...two days before Christmas and the day before Billy's birthday. The shopping has to be complete because Will gets his infusion that day and that takes 8 hours, so there's no way I can leave home. So, the plan is to bake birthday cakes, prep Christmas dinner, and prep Billy's birthday dinner. I did say that was the plan, right? My plan? Uh, huh.

So Brooke arrived to start the IV and the pump keeps complaining of an occlusion. Generally that means there are air bubbles in the tubing that I need to remove (bubbles, not tubing). But today...the stupid pump just refuses to work so Brooke changes the tubing thinking maybe it's just a bad set. She heads out...and the pump plays with us again. I end up calling the Home IV company who state that apparently the motor is dying and I need a new pump. Did I mention that this company is in 2 1/2 hours away? This is an 8 hour infusion and it's already 10 AM. Oh, and as Brooke walked out the door she says, "Um, Will has expiratory wheezing." Oh, ok. So I have to unhook Will from his IV, attach sterile ends to the tubing and port, and take Will to the doctor. And he has bronchitis. How did I miss this??? Off to the pharmacy. Then to Billy's office to fax Will's records from Atlanta since I kinda forgot to do that earlier in the week. Eventually we arrive back home to receive the new pump and hook Will back up to the IV which will now finish at 10 PM. It's time to make dinner and put kids to bed...and nothing has been done for Billy's Christmas Eve birthday nor Christmas, but Will has lovely drugs (including the lovely prescription for prednisone) so maybe we can still make Cleveland.

I won't bore you with the details, but the next day pretty much followed suit, except that I did manage to bake and decorate Billy's birthday cake.

So fast forward to today. We've celebrated, we've enjoyed having everyone home, but Chelsea is now in the hospital with regular contractions. She isn't due for another month and we are supposed to have Chloe when Emily Grace debuts. Um, I leave for Cleveland tomorrow. So we set up a plan in case Chelsea does go into labor and I'm not here.

Then Angel Flight calls and tells us that one of the pilots has had to cancel so our flight to Cleveland is canceled. I had just finished making the arrangements with Teresa's brother who gave us the ticket for Billy. So now I have to call him back and tell him we can't make that flight because now we have to drive to Cleveland because airline tickets for Will and me would be $600.

Then...Erlene calls. Her mom has fallen and broken the femoral head (long bone in the upper leg that attaches to the hip) and needs surgery and a pin. Erlene is supposed to have my youngest three. At this point, it's almost comical. My lovely, orderly plan is now shot to pieces. So now what do we do? I call Anita who lovingly and graciously agrees on pretty much zero notice to host my three youngest for four days.

So, Chelsea is probably going to welcome Emily Grace into this world earlier than anticipated. Andrew, David, Caty, and Chris will be on red alert to get Chloe. Anita will have my youngest. And Billy, Will, and I leave in the morning for Cleveland.

Ya know, I really like to be in control. I like to have all the details in place. I can handle change and I generally roll with the punches. But sometimes those punches are a little more painful than others...but despite their pain, and despite wondering what in the world the Lord is doing, He still faithfully loves us and shows us that it isn't our plan that's the best. Really.

Saturday, December 12, 2009

It keeps creeping closer...

It is hard to believe that Christmas is two weeks away, which means that Cleveland is two weeks and two days away. Guess that means my shopping needs to be completed. Yikes! Where does that fit?

Just for the record...I write a lot about how difficult all this has been, but I hope that you also remember the blessings that we have received. God is very real and is at work in time and space and in our family. As difficult and painful as all of this is and continues to be, so does His grace abound. Maybe we are fortunate in that we have the opportunity to really see where He provides and where we have no choice but to trust that he WILL provide. Most of you don't have the opportunity to so clearly see His provision.

Right now, we have the Christmas and Cleveland expenses staring at us, but we also have this huge deductible looming. At times it seems utterly insurmountable. But we have God's promise that He is right there looking at those needs as well. So, for those who need to see God's ya go...

First. We were accepted for an Angel Flight for our Cleveland trip. It means that Will and one parent and no more than 50 lb of luggage will be transported in a private plane by a pilot that donates his time and resources to our family so we can get to Cleveland.

Well, then Billy's work scheduled lightened and now he can go. So now what do we do? Well, just yesterday, a friend's brother donated an airline ticket (on our favorite airline!) to Billy so he could also be at this dr's appointment. This brother doesn't even know us. Does he realize what a huge gift this is?!

Does that cover all of the expenses in Cleveland? Nope. But it helps. We won't be driving in uncertain weather. Will will hopefully handle a short flight better than he handled the last Ohio trip. And Billy gets to join us.

On the days when we just can't see daylight, we have to trust that even in this, He loves us and cares for us...We may not like how that looks sometimes, but I would rather be close under His wing and struggling with the ills of this world than having no hope. Because without Christ, there is no hope. Unfathomable.

Friday, December 11, 2009 more ways that one

Written on Friday...but kinda not posted on Friday. :)

Will is finally stabilizing. Still moderately tacchycardic, but stable. The autonomic dysfunction seems to be wreaking less havoc on daily life.

The port was accessed successfully Thursday and he received his full infusion with little discomfort or irritation. He is extremely sensitive to the adhesives, so I contacted the infusion company and they are very graciously sending several different options for us to try.

We requested a very specific nurse for Will since ours apparently resigned. For the record, can I state that I love this new nurse? She is a strong believer, gentle, very experienced, knowledgable, kind...and loves pediatrics. She is truly a gift from God at this point. I will have to deaccess the port from this point forward (I have pulled his IV's almost since the beginning.) The procedures for accessing and deaccessing the port are different than your normal IV, especially in a person with a compromised immune system, so precautions (like how to put on sterile gloves without desterilizing them) need to be learned as well as the need to pull out the IV without dislodging the port.

So the question has been posed as to how we are doing. Overall, we are still putting one foot in front of the other. The main project that Billy has been working on for forever was successful and is drawing to a close, so he may be home more. Camden is struggling with his OCD a lot, and Caroline is sruggling with abdominal pain of unknown origin and is not wanting to eat. Emotionally how is everyone doing? Well, that is the trickier answer. To say we are fine is a lie. To say that we can't keep doing this is also a lie. We are somewhere in between...

The adjustment of being the only decision maker in the home to now needing to actually check with Billy is a big adjustment. Not because I don't want to check with him, but because it is no longer a habit to check with him. That obviously can create some stress.

Andrew never complains, but at the same time, that means you never really know how he is. Chris is working at the Christmas tree farm, so he is as happy as a clam. Will varies every day from fine to not feeling well from happy to is like living with a constantly changing ocean where the storms blow in without warning. Camden is highly reactive, Ben flies under the radar, and Caroline is Caroline...sometimes she feels great and sometimes she doesn't.

To say we are without hope is wrong. To say that it is just hard...well, that it is.

Friday, December 4, 2009

Looks Like We Made It!

We arrived at the hospital this morning, and whom should we meet, but the very same anesthesiologist from Will's T&A in January! She read through the chart, thought, "This must be the same kid," and sure enough, it was. She was very willing to read through all of the Atlanta information, compare it to what she did in January, and feel very comfortable that we would not have a repeat performance. In other words, she was fairly confident that Will would not remember this procedure...and she was right. It is amazing how the Lord works!

The procedure went well. The surgeon is not only very competent but a truly gracious gentleman who was very patient with all of our questions. The anesthhesiologist offered to infuse him fully today so he wouldn't have to do it again in two days. While I realize that it didn't really affect her as much as it did the nurses, it was still beyond thoughtful that she was willing to do it.

David Charles came by and brought a couple of slices of chocolate cheesecake that he had made, and Caty came bearing the lovely gift of food. Will was fading and needed calories along with that lovely bag of fluid (the popsicles and soda I had brought for him were just not enough!); Caty brought him some soup and me a salad and a lovely Diet Coke.

We arrived home around 7 Friday evening. He has since struggled with some energy issues, some tacchycardia, and some autonomic problems, he is doing remarkably well. Thank you for your prayers...

I apologize for not posting this earlier... I just opened my netbook and here it was and I realized that it had patiently waited for me to return to it. I apparently suffered from short term memory loss...Now...what was I doing??? :)

Thursday, December 3, 2009


Briefly....William will be undergoing outpatient surgery Friday morning to implant a port to make his infusions less painful.

That being said...his last surgery was a bit traumatic in that he wasn't really asleep...he came back from recovery telling me what happened during the procedure. He was paralyzed but not really "asleep" so he couldn't tell anyone that he was actually "awake".

So, tomorrow brings with it its own issues...mito is a funny disease in that his body processes drugs differently than the average kid's. He may end up in a full blown mito crash. Or he may be fine.

So, we would be grateful for your prayers for peace, wisdom, and strength for what tomorrow brings. Our God is a mighty, sovereign God. He has Will firmly in His hands. Of that we are confident. Please pray that Will will know that confidently. Please pray for the other kids who will remain at home...


Monday, November 23, 2009

Even in this...

Billy and I escaped for a couple of days for our anniversary. It was pretty funny. At check in, the clerk asked what we were gonna do. We just looked at each other and said, "Sleep!" We are getting so old!!!

It was so lovely to just sit quietly. That just never happens at home. Someone asked me if I would be able to detach from all home. Interesting question. I really didn't know how to answer that. On the one hand, it was really nice to just escape for a while and not have to constantly deal with all of it. On the other hand, it's always there in the back of your mind, wondering if Will is taking his meds, or is he taking the opportunity to eat what he wants regardless of the consequences. The fact that Will has mitochondrial disease never leaves your conscious thought because everything impacts it. Is he getting to bed on time? Is he pushing his siblings around because he's just mad and doesn't want to make the right choices? Is he saying he took his meds when he really isn't? It's like you are forever vigilant to protect him from external circumstances as well as from himself, helping him come to grips with the fact that this isn't going to go away and the choices he makes right now affect him in an hour or in a day...and he does not want to accept that.

So, upon arrival home, it was discovered that indeed, he isn't feeling all that great. He did not take his meds despite telling his brother he did. He ate what he knew he shouldn't because he wanted what he shouldn't have (don't we all????). And he is paying for his choices. Unfortunately, we all get to pay for his choices.

It doesn't help that he really doesn't want this port installed and that is looming. Next Friday (Dec 4) is the set date. It's the right answer. It took three sticks on Friday to get a vein for his IV. This will eliminate the majority of the discomfort as well as protect the remaining available IV sites. But it also means the third surgery this year. Three times under general in one calendar year...

Even in this, we are thankful that William is still able to be challenging, because that means that he's still quite functional. :) We can also be grateful that the kids were willing to manage the household without us for a few days while we spent some time remembering why in the world we got married in the first place. :) We can also be thankful that we have a sovereign Lord who loves us and wants what is best for us even when we fail to understand how our current situation could possibly fit into that category.

Saturday, November 14, 2009

It does not work for me to take an absence from this blog because then I think, "um, if I throw all of this out there in one post then it will sound like our life is out of control!" and then I realize that our life IS out of control. :) I forget that this really isn't "normal", whatever that means.

So, here's the quick version. Will's MRI was unremarkable (medical speak for the spine looks fine but he is still in pain) so they prescribed a lumbar (lower back) corset and physical therapy. Physical therapy starts Monday and the lumbar corset should arrive in the next few days. Cam's OCD is rearing its ugly head so we're heading back to visit his doc in DC this week to determine what we need to do next. Wednesday, we meet with the surgeon to discuss the port for William. We won't mention my lack of coordination that resulted in a less than spectacular dive into a pool that left my back in knots. :) Really, there does come a time when you realize that there are some things that you ought not do...especially if you have not done them in years. :)

So now you are caught up.

On a lighter side, Billy's mom visited for two weeks and we thoroughly enjoyed her visit, even as we got to know the local laundromats. Yes, during her visit, our washer died and we had to wait for the part to arrive and then a repairman to arrive. Three weeks with no washer is really just totally aggravating. :) Mom ended up taking the laundry and managing that for me while I managed Will's infusion and life at home...sometimes I think back and wonder what I actually did do, but if I didn't do anything why am I so tired? From my lack of blog posts it's totally obvious I wasn't near my computer, but for the life of me I have no idea what took up the entire two weeks while she was here.

Ah! I did get a passport ordered while she was here and it came today! I know it's weird, but I've always wanted a passport. It is like the promise of what you could do, even if you don't ever get to do it. You could pick up and run off to Europe for the weekend even though that really is so not going to happen, but it COULD if you just had a passport, right? I realize that maybe I sound a little delusional, but I love to travel and a passport is like a thread of hope that maybe someday it will happen. :)

Caroline invited herself to spend the night at Erlene and Randy's tonight, the two youngest boys are in bed, Chris is on the computer, and Andrew and Will (who finally lost his connection to Myrtle two hours ago) are watching a movie. And I haven't taken the back drugs for the evening so I'm still a little lucid. Maybe I can actually read my book while I am still awake???

Tuesday, October 27, 2009


Well, the decision was made. The weekly infusions have kept us out of the ER, so they are going to install a medport in Will to eliminate the weekly sticks for an IV.

A medport is basically a catheter that is inserted in a vein near the clavicle. It's a minor surgical procedure. (There is never a minor surgical procedure with a mito patient!) We should hear in the next few days when that will happen. It will make the weekly now-8-hour infusions a little more manageable since I will be able to hook him up overnight instead of all day. It also means that his veins won't be so full of scar tissue that they are unusable. He's already lost one vein, so we're trying to not lose the others.

In the meantime, Will and I are trekking back to Richmond tomorrow to get his back checked. It popped three weeks ago and still hurts. Xray showed no fracture, so we're not really sure why it still hurts.

So, that is the short version of what is happening...I'll keep you updated after I get some magical sleep. :)

Magical Sleep

I really didn't understand how amazing sleep was until I got to the point where I never got enough. It's like walking around in a fog with your eyes burning all the time and you still have to make major life decisions. Is it too early to make a New Year's Resolution to get to bed earlier? Yes, I do realize that I am writing this after midnight, but what's a girl to do? Poor Cinderella couldn't go to the ball until all of her regular chores were done. I should finish mine before I play or rest, right?

Um. No. Not right. But why did I have to get to 43 before I realized that? :) There are things more important in life than folding the laundry and sweeping the floor and writing lesson plans and checking your son's math paper. So, when your daughter giggles and you have to choose between chasing her or disciplining her because she simply does not wish to head to bed (She isn't old enough to understand the concept of magical sleep!), which do you choose? Tonight I chose to chase her and her brother up the stairs and tickle them into bed. It was fun and she went to sleep smiling. Why don't I choose that path more often?

I finally decided that I am just too tired to be fun anymore. The weariness of the last year has taken such a toll that I avoid going to bed because it means I have to get up to do it all over again tomorrow. If I stay up, I can deny tomorrow. I can deny that I'm lonely, that my son is sick, that I am just emotionally exhausted. That it is just too hard. But if I head to bed, then it all comes again so much faster. There is no quiet, peaceful moment in the day. Between school, meal preparation, child training, meal preparation, medical phone calls, insurance phone calls, doctor phone calls, oh, and meal preparation, there is never a quiet, peaceful moment. Then the little guys go to bed, the big guys do their own peaceful, quiet thing, and I'm finally able to complete a thought...only I'm too tired to complete a I deny that I need rest and I deny tomorrow. But what I miss is that it already IS tomorrow! :) So I go to bed late and I'm so not fun anymore.

I know I'm not alone out there...but aren't we so much happier when we are rested? Isn't it easier to deal with the meal preparation and the insurance phone calls, and the medical phone calls, and the loneliness when you have had that magical rest?

It's just a thought... Hopefully you are all reading this in the morning after a lovely 8 hours of sleep and not at 1 AM with bloodshot eyes like mine. :)

Monday, October 12, 2009

It is all about perspective...

I mean really. Cold is cold, right? But, then again, there's a whole different kind of cold when you decide to NOT check the weather and drive off on a beautiful, sunny October morning in a Jeep with no top and no doors...and then the rain moves in and the temperature drops about twenty degrees and you don't even have a sweater...and you are driving down the road at 60 mph. The concept of wind chill takes on a whole new perspective! Really.

That is when you really know who your friends are! :) I humbly called Erlene from Wawa where I was warming my frozen hands around a piping hot cup of coffee when I asked her if I could please maybe borrow a sweater? She lives a mile away from this particular Wawa and she loves me despite myself. So she graciously agreed to lend me one of Kelly's sweatshirts (I totally owe you, Kelly!) that I promptly put on and did not care that it matched nothing I was wearing and have never been so happy to see a hoodie in all my life. I even wore this hoodie into Bloom where I promptly dropped the cup of coffee all over the floor...

How much attention can you possibly draw to yourself? Driving a Jeep with no doors when it's 60 degrees while wearing capris and sandals that are way too cold for the weather and a hoodie that does not match. And then you dump coffee all over the floor.

But I was warm.

And when I got home, I very sweetly told my men that I would welcome assistance in putting the hard top back on the Jeep at their earliest convenience. Darn. Summer's over!

Wednesday, October 7, 2009

Homeward Bound

While we have no intention of getting lost in the woods, we are planning to head toward home this afternoon. Will has been stable for the last 24 hours so all looks good.

We have been really blessed while here. While the first 24 hours was challenging, we had great nurses, nursing students, and the doctors were able to communicate effectively which is incredibly helpful. They even called Dr Teasley who is at a conference to discuss a medication change they wanted to make. I didn't anticipate that it would go so smoothly, but they really were fabulous.

We also learned valuable lessons. Instant oatmeal in the hospital bag is a lifesaver for Mom, coffee's benefits are not to be underestimated, and a private room makes the time much more manageable. Oh, and recliners are not meant for sleeping! :)

Thank you for the emails and phone calls over the last few days!

Tuesday, October 6, 2009

Quick Update

Andrew played chaperone to two very tired parents last night. He brought Billy to MCV to spend the night with Will and took me home for some much needed sleep. It is amazing what rest will do for a person. :)

So, here's where we are. Will's fever is significantly lower. It still goes up as medication wears off, but it's not nearly as high as Sunday. (With autonomic dysfunction, the child can be burning up and a thermometer can get a different reading every time you take it. Even with the highest reading, it still may read too low.)

He still has GI issues, so the current discussion is when can they release him. Current philosophy is that he will remain there on fluids until the GI issues resolve because the threat of dehydration is so significant for him. (They put 3 liters of fluid in him Sunday!) When asked how long that might be, the answer was "maybe toward the end of the week." I requested to pull him off of his gastroparesis medication, but that medication also helps the mitochondrial disease issues. So it's a bit of a catch 22.

I need to head south so Billy can return to work...Thank you so much for the encouraging emails and phone calls and visits. They are deeply appreciated!

Monday, October 5, 2009


Will has been admitted to MCV main hospitl for an undetermined period of time. His heart rate needs to stabilize before they will discharge him.

More tomorrow...or actually, later today.

Flu...and mito

Sorry for the brevity, but here we are...We went to MCV this am with tacchycardia (our favorite problem these days) and the inability to stand without early signs of passing out. They administered 2 liters of fluids and sent us home.

Upon discharge, he was back to our normal, goofy Will. On the trip home, I literally watched him deteriorate. By the time we got home, his fever was 103. back to MCV we went.

Preliminary lab work suggests it is the flu. Which one we won't know for at least a day. He has received Tamiflu and another liter of fluid. His heart rate is still tacchycardic (came in at 120, has hit 154, and is now hanging around 118.) We are waiting to see if they plan to admit him or not. My presumption is that they will.

The flu is more difficult for William for a number of reasons. The main issue is that his body is busy expending its limited energy fighting the virus and can't make enough energy to support all of the other normal functions as well. Basically, he is in a major energy crisis.

At the moment, he is resting quietly, watching a movie, and waiting to see what the plan is. Billy is here with us. Andrew is holding down the fort.

We do have friends willing to step in in the morning...we will keep you posted as we learn more and have time.

Friday, September 25, 2009

And the answer is...

I don't know.

We took Will to see Dr Johnson (ENT). He looked in Will's ears. He performed a hearing test. Yep. Normal. Um, so how do you explain the transient hearing loss, ear pressure, tinnitis, and headaches? Well, Dr Johnson thinks that Will's sodium levels spike after an infusion (it is saline after all and he is on medication that causes him to retain sodium), and the fluid builds up in the mechanisms of the ear and muffles the hearing.

Except that Will's sodium levels remain on the low end of normal. We don't have a post perfusion sodium level, but we do have them only a few days apart and the number is rock solid. Three tests. Almost identical results.

Dr Johnson (ENT) recommended slowing the rate of infusion down (give the fluids over a longer period of time). The prescription calls for two liters over four hours. Last Saturday's infusion took 5 1/2 because it was gravity fed. Well, the nurse can't change the order, so today's infusion was four hours. So I guess we'll see tomorrow whether we have issues or not.

Dr Teasley returned my call this afternoon. We're adding a new med to Will's regime to try to sustain the blood pressure. His heart rate is finally stabilizing, but now his bp is unstable. She thinks his body is just compensating...not a great sign. She called Dr Cohen's office (Cleveland Clinic...where we are scheduled to go in Dec), and apparently his wife is gravely ill and they won't see us any sooner. She recommended finding another specialist and she would happily refer us to wherever we decide. A message did come across the mito forum that a family called every day to see if there was a cancellation and they got in this week. So guess what I'm gonna do every day??? Dr Teasley is referring us to a neuro-ENT specialist at MCV to re-evaluate the hearing issue. Not sure when that will be...

So, as a recap...we just don't know. We get to add a doctor (neuro-ENT), we get to locate another doctor (mito specialist if we can't get to Cleveland), and we pray that things do not continue to deteriorate...esp the hearing.

I asked Will today how many days a week he didn't feel well. His answer? "Are we talking my version of feel well or yours?"

Hmmm..."What IS your definition of don't feel well?"

His answer, "Not having pain more than a 2, not being more tired than a 5, not feeling awful in general."

And how many days a week is that?

His answer, "About half."

"So, by normal standards how many?"

His answer, "None."

Ugh. I just hate that answer. I just want him to be a little boy...the goofy boy that coudn't sit still during school so I finally gave him an exercise ball for a chair. The crazy kid who was always bouncing off the wall, climbing a tree, or redefining mischief. The rambunctious, silly, boy who always smiled. You don't realize what a gift that child is until he disappears into a tired, exhausted, grumpy, I-don't_feel-well, can I just sleep? kind of child who knows the pain scale, what his "normal" blood pressure is, when his heart rate is above 85 without bothering to take his pulse, and knows the medical jargon of a fourth year medical student.

As much as I want a cave and a blanket and a piece of chocolate, I think he needs it more than I do. If only it were that easy.

Tuesday, September 22, 2009

Mito forums...

While most of you don't hear from me in forever, I'm busy reading my email and studying the mito forum on yahoo. Being a little fly on the wall of this forum has yielded more information that I gained all summer doing google searches.

Friday, Will again complained of random hearing loss and pressure. I really thought he just was being non compliant with his medications and his allergies were an issue. Well, he actually cried over his ears hurting when his little sister shrieked into them, so I decided to take him in. I fully expected he had at least fluid in his ears, but instead, his ears were perfectly normal. And he passed a quick hearing test. Really. No explanation as to why the hearing issue. Saturday, he came to me after his infusion and said that he was having a hard time hearing again. It just didn't make sense, but I had this growing fear that we were looking at a mito issue.


Today, on the forum, they were discussing Meneire's Disease...headache (check), pressure (check), transient hearing loss that worsens (check), unstable balance (check). Dizziness. (check) Oh, great. Degenerative. (What with mito ISN'T degenerative????) Eventually leads to deafness.

No cure. But the treatment is a low sodium, low fluid diet. You're kidding, right? He's on medication to stabilize his blood pressure that requires him to retain sodium, he's supposed to take sodium tablets, and he is supposed to drink a gallon of water a day and receive a 2 liter infusion each week.

Am I jumping to conclusions? Maybe. Is it a little too real? Yep. He gets an infusion and he has hearing loss.

Nothing with mito is easy. Nothing. How much more can a 13 yo take? How do we even deal with one more thing?

Oh, Lord. I believe, but my unbelief because right now, I just don't know how on my own to manage mito, much less this. I've never hoped for me to be wrong as much as I do at this moment.

Saturday, September 19, 2009

So how did you spend your Friday?

Last night, Billy and I went to Pancho Villa Mexican Restaurant with our friends the Brooks. The weather was lovely. The food was wonderful. And the margarita was very much enjoyed...after what was a very long day in which NOTHING went according to plan. And I do mean nothing. I have no doubt in my mind that it was indeed the Lord proving once again who was really in control. And it most definitely is NOT me.

The plan was school in the morning while we await the dishwasher repairman and Will gets his infusion, and finishing school and household chores in the afternoon.

However, the day started with my oversleeping (the incessant Blackberry did sing its song, but I apparently dismissed it and continued snoozing) and awoke to an acrid odor emanating from my kitchen. I hopped out of bed and hobbled down the stairs (ugly knee injury in a fall down the stairs...story for another day!) just in time to hug my very tall sons as they head to Williamsburg for the day. They did a fabulous job of packing their lunches and fixing their breakfasts (acrid odor and all) and leaving on time without the presence of Mom. Part of me is every so proud of them and the other part is very sad that I am indeed working myself out of a job. They are becoming independent adults!

Fast shower, put on my referee stripes because the children are uncooperative, and head to the schoolroom...and the beagle escapes. Again. We leave the gate open for when he returns, take the labs, and head to the schoolroom. (Mary had a lamb, but we have labs!) Call the pediatrician because Will's ears hurt. 4 PM appt. That should just work...the home health nurse who was supposed to come Wednesday is coming today at 11, so we should finish the infusion and have just enough time to make it. Or not. At 11:15 I receive a call from her office telling me that she has had an emergency and won't be here til 1. A four hour infusion means that I now have to see if Dr Aaronson will see Will in 30 minutes. They say yes, so we race for shoes and into the van and into Fredericksburg. His ears are clear. He passes a hearing test. He is having random, unexplainable pressure and hearing loss and Dr A has no clue why. But, we do come away with a prescription for a cream to kill the chiggers that he and Caroline picked up in the woods on Wednesday. We immediately head back home because the dishwasher repairman is supposed to come. Only, upon arrival, we realize that we left the other gate open for Jackson, and now all three dogs are gone. At 1230, I call Sears and they inform me that he is coming, but he is running late. Great. Lunch, then back to school til the nurse comes.

But no. We have no bread and that simply cannot be, so I throw bread in the Bosch and send the kids to ride their bikes for 30 minutes. But now the dogs are home. And they are labs, so they very obviously found the local muddy pond. Instead of one chocolate and one black lab, we have two chocolate labs. They can't be bathed outside because the hose was run over by the mower. (First lesson to teach your kids when they mow the lawn is make sure the hose is put away!) If I leave them muddy, then they will probably "accidentally" be let in by one of the kids and then we'll really have a mess. Fine. So, I pick up this 80 lb lab and dump her in the tub and start the bathing process. I hurt my knee so I can't kneel on it, so I finally sit on the edge of the tub with my feet in the tub to bathe the dog. I'm looking like I took a swim in the local muddy pond, but eventually all 3 dogs are once again silky and beautiful. It's also now 330 and the nurse still has not arrived. I hurriedly cleaned the bathroom and then race for the shower. And she arrives. I throw on some clothes and the phone rings. It's Sears. The dishwasher repairman isn't arriving because he is headed to the hospital for a knee injury. Tony, the nurse, meets all of the children and my granddaughter and I finally fly down the stairs...only she realizes that she is supposed to actually infuse William. And it's now 415. And it takes 4 hours. And she has 3 other patients to see after William. So she reschedules for Saturday.

I dry my hair, make tacos for the kids for dinner, and open a can of vegetables. (I almost never use canned vegies!) Only my can opener breaks. Really.

Dinner is finally on the table, everyone is ready for bed, and I head out for a wonderful dinner with Billy and the Brooks, and I enjoy my margarita. It was a lovely evening filled with laughter and friends and a respite in the middle of a swirling storm.

By the way...the nurse is wonderful and loves kids and dogs. But she hates cats. :) The Lord loves to show us who really is in control. :)

Tuesday, September 15, 2009

Myrtle has entered the building...

Myrtle arrived this evening. She is a lovely, slender thing standing rather silently in the corner of the room with her little green "battery charging" light on. Andrew has decided to call her Bob. Bob just doesn't seem to fit, but I'll allow him to call her what he will. Here, she shall remain Myrtle. :)

The nurse is due to arrive tomorrow. This could get interesting. The order on the bag states that the 2 liters should be administered over four hours. Four hours is a long time. Especially when you have a stranger hanging out in your house with your son. Better yet, she is hanging out in a house with loads of kids and 3 dogs and 2 cats. The yard hasn't been mowed in weeks since I blew the engine in it (No, I wasn't racing it!)and the guys are working on it in their spare time. The deer got the garden so the garden is one huge overgrown disaster. The young chickens keep escaping the coop, so we even have chickens running around the property. We won't even discuss the house. We look very Beverly Hillbillies right now, so I have this sense of trepidation that she is going to dislike children and animals and she will totally be stuck with us...and us with her. So while I pray that we have this wonderful, maternal nurse with twelve of her own kids that are all grown and so she dearly misses the bustle of an insanely busy home, I fear that we have...the complete opposite. There's faith for ya, huh?

Myrtle is charged and ready to go but my batteries are on empty. I shall bid adieu and head to the sweet comfort of rest while I remind myself that the Lord really does have this under control and I really don't need to try to manage it all by myself...really. :)

Monday, September 14, 2009

First day of school....not.

A week later than most "normal" families, we were scheduled to begin our classroom work today. But we are not normal, are we? Nope. So, instead of eating breakfast and meandering our way in a nice straight line to the classroom in our very detached garage, we overslept (my alarm did NOT go off!), raced through a shower, (fortunately) threw on some clothes that could be seen in public, made oatmeal (it's fast), and called everyone to breakfast. And then found Will on the sofa.

His bp was down, his heart rate was up, he was fatigued, and sick. And in a lovely mito crash. Erlene, the amazing friend, answered my call and came to substitute teach the first day of school while Will and I headed to the ER. Dr Teasley had called ahead to Mary Washington for us so we didn't have to explain everything when we got there. Or so we thought.

Let's just say that no one understands mitochondrial disease and leave it at that. They finally got an IV started, but then they put us in a room with at least nine recliners and four televisions...playing different stations...all competing for the loudest volume. Will, of course, prefers Mary Washington Hospital, because they have cable tv in their rooms and he gets to sit for hours watching Animal Planet and the History Channel. Unfortunately, they were competing with CNN and an entertainment news channel. Our personal DVD player recently died, so we were pretty much stuck. Not a great environment for my 13 yo son who has a compromised immune system and was in the same ER room with who knows what illnesses and watching television that really was not appropriate for him. I was a bit frustrated, to say the least.

On the other hand, they did recognize that they had no clue and allowed me to help them determine that he needed a second bag of fluids. His bp and heart rate did stablize, and he finally came back to life and got goofy. Yep, he's back.

Fortunately, home health is finally ready to roll. Myrtle will come live at our house tomorrow, and the nurse will arrive Wednesday morning to begin an infusion. I hope she likes kids and dogs, because she will get to spend lots of time here. These infusions take a while, so she is kinda stuck with us. And she gets to do it every week! :)

Hopefully Myrtle and her magic fluids will eliminate some of these lovely ER runs...and maybe we won't have to figure out how to replace our portable DVD player quite so quickly.

Friday, September 11, 2009

Do you treat pediatric patients?

That became my favorite question today. I needed to find a home health agency to administer Will's weekly infusions. Ha! After I called the first two...and the next 20 agencies, I discovered that most do not treat pediatric patients! I finally located one that did...only to discover that they don't participate with our insurance company. Well, since we've already paid out a gazillion dollars, we would really like to not lay out another $6,000, so I finally broke down and called the insurance company as well as our case manager.

There is now a company waiting to provide this lovely ER-avoiding treatment, but now I have to call the dr back and ensure that they have ordered an IV pump and the fluids that the nurse will administer. I thought this was gonna be easy, but, alas, tis not.

However, Will is approved for weekly infusions, we don't have to leave home to get them which means I don't have to take him to an ER to be exposed to who knows what, and the rest of our life can continue while he's hooked up to his new friend, Myrtle. At least I think we should name his pump Myrtle, don't you agree? Should you have a different name that seems more appropriate, then please let me know! In the meantime, I am going to get some sleep so I can call tomorrow and request that Myrtle arrive unscathed and in a timely fashion so that maybe, just maybe, we'll not need the ER again for a long while!

On a serious note, please pray that his veins hold up well to the infusions such that we don't need to put in a port. Will's immune system is compromised thanks to this lovely disease, and a port is like a constantly open avenue for infection...

Off to slumberland I drift....

Tuesday, September 8, 2009

I'm so out of creativity

Sorry. I can't come up with anything catchy and cute tonight with which to title this one...But I can promise it will be short! :)

Talked to Will's dr tonight. Short answer: She is calling Cleveland for us to see if she can get our appointment moved up. Will's autonomic dysfunction seems to be worsening, so we obviously need to do something more to get him back to something that resembles stability, esp before winter and cold and flu season hit.

She also is going to contact our new and very appreciated case manager at Anthem to request home health for six weeks for weekly infusions to see if that will help the stability issue and prevent the many ER visits that always seem to be looming.

She asked me to call Dr Grubb in Toledo and discuss the cardiac arrhythmia we saw Friday night and continued to see today. Sitting, his heart rate is in the mid 80's which is ok but not awesome. If he moved around today it hung between 130 and 164...I don't mean running around, I mean just moving around. That is way too high for so little motion.

We're gonna talk by phone again as soon as we have more information...and I'll keep you posted.

I appreciate your prayers. I am blessed beyond belief with the outpouring of love and support I've been shown in the last few weeks, and I deeply appreciate it all. I am overwhelmed with Will's issues, with the needs of my other kids, with impending school needs, and with my need for sleep and running. :) Thank you for your prayers and for loving my family.

Saturday, September 5, 2009

How do you spend YOUR Friday nights?

Our family is often seen swimming upstream. We have 8 kids. We home educate. We drive a very non politically correct vehicle. (15 passenger vans are NOT green! Ours is actually silver!) And we spend our Friday nights at the ER while most of America is sleeping.

Will thoroughly enjoyed playing with a friend on Friday. It was a rare opportunity that was enjoyed to its full capacity. Unfortunately, what had been simmering all week became a full blown mito crash that night. He went to bed on time even though he argued with me that he had not slept well all week. At midnight, he was wide awake, came downstairs where I was working (yes, I know. I should have been in bed as well, but that basement is almost finished!!!) and said, "Feel this." He was referring to his heart rate which was a whopping 132 beats per minute. Considering that 100 is tachycardic and is our "protocol number" for an ER visit for fluids, he was well beyond the point of wondering whether we should go. No waffling here. I sent him off to get dressed while I gave instructions to my oldest two boys who also should have been in bed but weren't, emailed Billy who then came home from work in order to go with us, and packed "The Bag." (My gym bag is always ready to go. All I have to do at any given time is throw in either gym clothes or regular clothes and I'm set for an indefinite period of time.)

After deciding to head to MCV instead of Mary Washington since they have a pediatric ER, his records are all there, and his specialists are all there, we headed south. The entire trip down I kept hearing him sigh in the back seat. Not a good sign.

The short story is Will's body does not make enough energy and he has no reserve capacity. While this seems like no big deal, it's a very big deal. His organs all require ATP (energy) in order to function properly. In its absence, damage occurs and it's irreversible. That is why this disease is progressive. With each crash, we potentially damage those organs even more. Not crashing is the goal but we haven't been able to prevent these crashes from occurring regularly. The sighing on the way down was an issue because it represents his body burning excess oxygen trying to create more energy that it just is not able to produce. It is the first time that has happened, which has me concerned... Is this a progression of the disease?

In previous ER visits, one bag of fluids is all he has needed to stabilize. Last night, one really didn't quite cut it. They were looking at admitting him because they really have no clue what to do with mitochondrial disease, when I asked them to hang a second bag and run a second bolus (a lot of fluid in a short period of time). Finally, his heart rate dropped below 100 but it still bounced all over the place which means that his heart rate was inconsistent...another sign that his autonomic nervous system is not coping well.

So, we finally were discharged and arrived home at 645 this morning, just in time to say good morning to my youngest three. Billy and I managed a couple of hours of sleep (thank you older kids for helping!) but we are exhausted.

On Tuesday, I will have to call Dr Teasley and determine if we need to make any further changes in his protocol and/or medications. Until then, we just watch him for further signs of distress which will provide us with another opportunity to visit the MCV ER and hang out with Kati, our nurse last night who promised to keep a look out for William and snag him as her patient when he returns. She actually read through Dr Shoffner's notes (Atlanta dr) which totally earned my respect because they are anything but an easy read. (She just wanted to understand Will's condition so she could help. Amazing!)

Thursday, September 3, 2009

Mito. It really is a four letter word.

I finally found a mito forum, thanks to Traci. I read daily about other families and their struggles with this heinous disease. Everyone who has it presents differently, but no matter how they present, you realize that they are fighting the same battles you are.

This week, there was a family who rejoiced in the birth of a new daughter...and that night grieved over the loss of one of their other children who suffered with mito. How do you even process that? There are single moms out there who have a child in the hospital for six weeks and have to fight the school system to get their child enrolled in a home bound program.

So, we are fortunate. I home school, my son is not in the hospital, and I'm still married. Does that make today easier? Nope. When Will comes to me complaining of random pain, I have nothing to offer him. He can no longer take Tylenol, so do we take Advil? Do we just learn to deal with the random pain? For how long will we be able to do that? What about his body temp? He's suddenly burning up...but now he's cold. He's not sleeping so he is exhausted and has an insanely short fuse. There's always this sense of impending doom, like I am going to wake up tomorrow and it's gonna be an ER day instead of a day preparing for school. Oh, and we have to plan our school year to accomodate Will being non-functional and maybe my not being here to teach while still moving everyone forward.

One of the moms on the aforementioned forum wrote a blog for the National Organization of Rare Diseases. It can be read at It makes me very sad for her and her family because I understand what she is going through. It also makes me realize I'm not so alone in this world in grieving over my son's health issues and what it is doing to him and to my family.

Today we got a call from a case manager with our insurance company. Woohoo! We finally got a case manager. This is one of those, "I wish we didn't need it, but boy am I glad we have it" moments. Finally, one person who can help navigate the insurance nightmare. Someone who can help find ways around the appeal processes. (I have two appeals I am currently writing.) She asked me loads of questions about Will's medical history, does he take any meds (um, you mean the ten he takes every day???), and finally asked how this was affecting our family financially. Amazing.

SO, now that I am finished being depressing, I'm heading to bed. My basement is almost finished, but my office and school room look like a tropical storm took up residence. Tomorrow is another day! Maybe we'll even spend it cleaning and not in the ER!

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!

Wednesday, July 29, 2009

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 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 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...

Tuesday, July 28, 2009


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 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!!! :)

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 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.

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.

Thursday, July 2, 2009


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. is the foundation for research and support of those with mitochondria disorders. Fabulous website. 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! :)

Tuesday, June 30, 2009

Let's Make a Deal

I chatted with a friend tonight about the articles posted below and about daily life in the Coleman home. Before she got on the line, her husband answered and asked how we were doing. I simply laughed and told him that I frequently chose to not answer that question anymore. :) As I've said before, and I quote from Thumper's dad, "If you can't say something nice, don't say nothin' at all."

So, let's make a deal. I'll simply post here how things are sorta going, and when you want to know, you can sorta read between the lines and get a brief synopsis of our daily life...and then you will not leave befuddled when I refuse to verbalize what is happening in our life. Does that work? I don't mean to ignore your question. I know that, for the most part, you really want to know. But I often can't answer without crying. When you ask me, it means I have to look at the big picture in order to answer honestly and if I look at the big picture, I'm totally overwhelmed.. and so I cry. Perfectly normal response, right? (Ok. I know it's not, but we are making a deal here, right? So this response is your concession to me!) :)

Yes, our family is struggling. Billy is working very long hours, is exhausted, and is not available by phone the majority of the time. Andrew got his license and is now working more than full time at Kings Dominion as a lifeguard. Chris is working a few hours a week at a local day lily farm and learning how to become a photographer. Will is struggling. Camden is mostly coping (and facing a birthday where he wants a Golden Retriever puppy...anyone know of one for really cheap???). Benjamin and Caroline are the dangerous duo. Me? Well, I plead the fifth. Let's just say that single parenting, home schooling, managing Will's illness, feeling crummy thanks to the new meds and not being able to run for the last three months, and trying to work miracles in a budget to allow for another long distance doctor's appt has left me a bit...weary. The children's hearts are struggling in very real ways and that has zapped the last bit of emotional energy that I might have had. That's simple honesty. God has given me more than I can handle and I really don't know what to do with it anymore. And, in general, I don't wanna talk about it. :)

HEAV article #2

I received this email yesterday afternoon from my editor who asked me HOW to home school a chronically ill child. Hmmm....How do I answer that one? Well, she requested a second article for the magazine based on that question. I am copying and pasting it below so you can read (and comment!!!) and tell me what ya think. Remember, you CAN comment on the blog...there's this little button below each entry with the word, "comment" on it. :)

Here goes...

Homeschooling is already overwhelming, so adding in a chronic illness can make you feel like the needs are greater than your ability to meet them. The statement that “God only gives you what you can handle” is totally false. He gives us more than we can handle so that we have to lean on Him. Lean on Him and trust that you aren’t failing.

• The first thing to do is to realign your expectations. Then make realistic goals for yourself and your sick child. When necessary, repeat number one.

• Don’t compare your daily accomplishments with your best friend’s. She probably went to the doctor once last month. You’ve already seen two this week. Your day is totally different, so don’t pretend they are the same. They aren’t.

• Determine exactly how much time you can devote to formal “schooling.” Be realistic. If you can’t accomplish school this week, there’s always next week. Yes, it can become an issue when it’s always going to be “next week,” but you can’t function without rest and you will dig yourself into a physical and emotional hole that will overwhelm you if you try to live your life with unrealistic standards. Remember that homeschooling is about more than school.

• Consider creative scheduling. If you can’t manage to squeeze in four language lessons and four math lessons every day, consider teaching your younger children on Monday, Wednesday, and Friday, and your older children on Tuesday and Thursday. The school year may be longer this way, but everyone is still moving forward. If you have to miss a day, you miss it. Just go back to the plan as soon as you can.

• Write out your lesson plans in advance. I take a month during the summer and lay out the entire program for the year, especially the books that my children will read. When I am unexpectedly away from home, they just have to look at what’s next in order to continue forward.

• Find a curriculum that makes your life easier. I understand the concept of learning styles, but on a practical level you have to be able to manage. If your program is cumbersome, look for something that will allow your child to move forward but takes less of your time.

• Outsource. Find creative ways to home educate your children so the full responsibility is not on your shoulders. There are fabulous online programs that allow your children to move forward without you being present. Find a piano teacher who will come to your home. Use a co-op. Find a college student willing to teach a class to your children. One or two video courses might help for an older child.

• If you rely on library books, put them on hold two weeks before you need them and have your husband pick the books up on his way home. Our library allows my husband to check out books on my card so that, should a crisis occur, the library late fees are all on one card. (Our library has a maximum fine of $10 which, I hate to admit, we pay regularly, but we only pay it on one card!)

• Train your other children as soon as possible in household management. Someone has to keep the ship on course and you can’t always do it. If you have to miss school in order to teach your children how to mop the floor or bake bread, consider it a home-economics class. These are skills the children need on a practical level, and you need help. The family is in this together, so do not feel guilty asking your children to pitch in. The Proverbs 31 woman had lots of servants; you have children. 

• Focus on today. Tomorrow has its own issues.

• Trust your instincts. You spend inordinate amounts of time with this child. You will know which days he is able to perform schoolwork and which days he can’t. Every child and their illnesses are different. You may have to simply write off a full school year. Or, a school “year” might take you two years to complete. Again, trust your instincts.

• Get emotional support, either from a friend or from a professional. You need someone to talk to honestly without fear of rejection. Your emotions are real and need to be dealt with. Don’t ignore them.

• Find some way to manage the stress. I started running three years ago and it truly has saved my sanity. I lost weight, I gained energy, and the endorphins can’t be beat. Exercise is amazingly helpful.

• Nurture yourself. You have to put something into the emotional tank to be able to effectively parent/nurture your children, much less maintain a relationship with your husband. Remember. 70% of the marriages with a chronically ill child end in divorce. The threat is very real. Protect yourself and your family by also protecting (nurturing) you.

Monday, June 29, 2009


So, I'm probably as verbose in writing as I am in speaking...which is not necessarily a lovely trait. But it is a known trait. :) But I love writing so much more than I love speaking, especially with the lovely Plavix drug on board. I may lose my train of thought writing, but I don't have someone standing there staring at me wondering what in the world I was saying and where was I headed with that? With writing, I can just sit still and patiently wait (or not so patiently wait) for my brain to catch up with my fingers...and my fingers can move so much more quickly than my mouth...but the devastation they wreak is so much less offensive when I can simply backspace instead of having to say, "Oh, that isn't what I meant to say!" :)

And yes, I'm babbling. It's that kind of a night...that followed that kind of a day.

Actually, the reason it all came to mind is that today, I received an email from my editor requesting another short article regarding home education and chronically ill children. I am happy to write the article, but I'm happier that I didn't tell her my initial thoughts. :) My first inclination is to laugh...home education and chronic illness are just so...incompatible. You feel like a failure no matter what you do. The needs are so great that you feel like you can't possibly meet even a fraction of them. do I teach math and not be at home? Hmmm... Does math come before calling the doctor...or after? Do I hug my 7 year old who didn't see me yesterday or do I insist that she say her math facts?

I pray that whomever reads what I have written will indeed find it beneficial and encouraging...because I know from personal experience that encouragement is so doggone hard to come by most days...

Sunday, June 28, 2009

Atlanta, Toledo, and a Garden ;)

So the news is seeping in from Atlanta and I have never in my life felt more...ignorant. I have always been able to research and grasp the information regarding Will and felt fairly competent when talking to his numerous doctors. But mitochondria (mito for short) issues? Oh my heavens. When you start talking about oxidative lost me at hello. Let's just say that the rusty old brain is getting a workout these days relearning about cellular respiration (remember that 9th grade biology course that you knew you would never really need? Ha!) and anabolic and catabolic processes in relation to glycolysis. Yep. A little light reading going on over here at the Coleman home...

On a lighter note...the garden is beginning to thrive (thank you, Lord, for the rain so it could thrive on total neglect!) and beans should be in next week. Anyone interested in some? And for the record, squash bugs really do NOT like nasturtiums! SO far, it's working! No spray and very few bugs. Woohoo!

We have an appointment in Toledo. Will is becoming symptomatic again, and the news from Atlanta is filtering in, leaning towards a Complex III and Complex V mito disorder, so his neurologist recommended we go asap. Well, asap isn't exactly in the budget or on the calendar, so we're heading up the last week in July...Billy and kids will remain at home (Billy is still working insane hours) while Will and I trek north. Will's requesting a very long Jeep ride, but I'm not sure if it will get to make the trip with us or not. That decision is still out. An '88 Jeep on a 1200 mile drive might not be the wisest...but then again, it only has 168K miles on it...

Please remember to pray for us. The ropes over here are getting a bit frayed...

Tuesday, June 2, 2009

HEAV article...Homeschooling with Chronically Ill Children

You can simply avoid this post if you don't want to read a really long one. :) I submitted this tonight...If you guys have any thoughts on it, I'd welcome them. It should appear in the fall issue of the HEAV Educator Magazine...The magazine will have a nice little box of how to's, but this is the accompanying article. Comments welcome! :)

Homeschooling with a Chronically Ill Child
Nancy Coleman

Most people don’t realize that when a child is diagnosed with a chronic illness, the family is diagnosed with the chronic illness. No one escapes. When our son was diagnosed, the doctor informed us that 70% of the marriages in his practice end in divorce, and the teen pregnancy rate is significantly higher than the national average. I was shocked and pridefully believed that this illness would not affect my family that way.

Homeschooling is challenging. Homeschooling with a chronically ill child defies description. The time, energy, and financial resources dedicated to the management of the illness can be staggering. We have not only the normal, every day challenges of cleaning, laundry, grocery shopping, and child training, but we also have the added challenge of doctor appointments and medical crisis. In the first four months of this year, I drove 5,600 miles to 52 doctor appointments in Richmond (49 miles one way) as well as out of state. The constant physical, financial, and emotional strain takes a toll.

When people ask how they can help, I generally have this “deer in the headlights” look because I just don’t know how to answer. The list is huge; the needs are great. But I‘m not sure I want to burden someone else with my load. Before my son was ill, I would read through those “how to help” articles and think, “Got it: make dinner, pray, occasionally help with a daily chore.” My goal here is to help you understand why that list exists, and then give you some real, practical ideas on how to come alongside these families.

Encourage us
Every “how to help” list suggests sending a card. Now I understand why. I can put a card on my desk and simply see it sitting there to remember that someone out there is praying for my family and loving me even when I have no time to return a phone call or an e-mail. It is a tangible reminder that I am not alone. E-mail is great, but I don’t see that e-mail when I walk past my desk.

Job lost his entire family and all of his material possessions. His friends came by and sat with him for a week and said nothing at all. They just sat with him. You have no idea how much it means to someone grieving (and we do grieve over the health of our children), to let them know that they are not alone. Pray for the family, and then drop them a note that tells them you prayed for them. It is a huge encouragement to be able to gaze at the card on the shelf. It is a reminder that we are loved not only by our friends, but by our Heavenly Father.

Remind us
Remind the family of what is true. We often hear, “God won’t give you more than you can handle” or “God doesn’t make mistakes.” We know that God is sovereign and that He has a plan that we just don’t understand. We need to be reminded that God loves us and our children and that even in this God is showing Himself to be faithful. He has not abandoned us. Send a scripture verse with a note that explains why that Scripture is important to you.

Come alongside us
Help us avoid our isolation. Doctor’s offices and hospitals are lonely places, especially when we are out of town. At home, the needs are so great that we just keep plodding forward. There is no time to do anything else. We would love to go out for coffee or visit for an afternoon, but school and housework are already incomplete. How do we afford the time?

If you would like to visit, suggest working on a job together. That bathroom that is half painted can be finished in an afternoon with a friend. Not only do we get to see a friend, but we get to complete a task that never leaves the list. We need human contact and friends, but sometimes we just don’t see how it fits. There are always jobs that two can do… weed a flower bed or bring your ironing over and work together while you chat. If you simply want to visit, offer to come over for an hour and bring a snack to share. It is a manageable amount of time for both, and removes the panic of “how to be hospitable.”

Include our children
Homeschooling brings monumental pressure. Older children are better able to manage because they can work independently. My younger children are a whole different ballgame. We have a family friend who volunteered a couple of days a week to keep my younger children moving forward academically. We would have lost almost this entire school year if not for Erlene.

Another family invited my older children to their home for a science and world geography class. We were able to keep that one afternoon a week available for that class, and my older children were able to see their friends and complete two classes that I did not have to manage at all. Not only would my children not have seen their friends, but those classes would never have happened this year if not for this family.

The child that is ill gets the vast majority of attention. He also gets to escape household chores because he is either ill or at a doctor’s office. The other children therefore, carry not only a heavier load, but they do so with less supervision and attention. They are just as isolated as I am. Consider including them when your family does something fun like going for ice cream or visiting a museum. If your child is playing a team sport, consider asking if you can transport a child. My children would love to play team sports or take ballet, but I simply don’t know how to make it happen.

Pray for us
70% of the marriages with chronically ill children end in divorce. I really thought Dr. Grubb was exaggerating. The marriage is the foundation of the family. But when the family is assaulted by a chronic illness, the strain on the marriage is truly unbelievable.

I am utterly swamped trying to keep up with daily life as well as understanding all of my son’s diagnoses, medications, and how he feels each day―because any change in the morning could have consequences for the afternoon. He has multiple issues and two of them are rare and little understood.

My husband is utterly swamped at work and feeling the pressure of excelling at his own job performance while still maintaining a relationship with me and the children. Changing jobs takes on a whole new perspective when you have to consider the health insurance issue and whether or not our son would be insured by a different company.

Add in financial pressures from medical expenses and just the driving (36,000 miles per year and traveling to out of state physicians), and the marriage struggles. Time is what we don’t have but what we need to nurture the relationship. How marriages survive without Christ is truly an enigma to me. Please pray for us.