Where do I begin????

This is gonna take a while...so 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 Waynesboro...like 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.

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 provision...here 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.

Recovery....in 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 angry...it 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.

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??? :)

Ugh

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...

Thanks.

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.

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???