Happy Halloween

Little Big Man

7 going on 27

(in his dad's shirt)

✤✤✤✤✤✤✤✤✤✤✤✤✤✤✤✤✤✤

It's been another uneventful week. Heck, it's been an uneventful year for the most part.   Well, I suppose it depends on what you mean by uneventful. It's actually been quite eventful  --- all in a good way.  I've had the opportunity to travel to St. Louis, New Jersey, Colorado, and New York and enjoyed several weekend visits with out-of-town friends.  Definitely not my typical schedule to say the least.  I'm not sure what I did to deserve such a good year, but I'm just going to accept it, appreciate it and try not to read between any imaginary lines.

Jack's doing well, although he's been a little more "junkier" than usual (my fellow trach moms understand what I'm talking about).  Even after all these years, I'm still not a big fan of snot, especially snot that flows from a hole in the neck. But, he seems fine.  So far, we are all fine (translation: no H1N1).  I asked Eric if there were a lot of kids out in his class and he said no.  I'm still waiting to get "hit".

Next week is Jack's 11th birthday.  I haven't been inspired to write anything profound for his special day ... as of yet.  There are some years where I have much to say and there have been a few years where I feel like I've said it all and there's nothing more to add.  Jack's birthdays are always emotional for me, in ways that I can articulate and in ways I can't. Regardless, all of Jack's birthdays are special.

We don't have any big plans for the Halloween weekend. Poor Eric, being the youngest, he gets totally gypped on most the childhood traditions.  Of course, he thinks he's an adult anyway, so I don't know that he feels like he's missing out on anything.  He does have a costume, so we might head over to my sister's house and see if we can con my nephew (who is in high school) into a little trick-or-treating.  Jack will stay home with his dad and help hand out candy ... or something like that.

Have a fabulous weekend and don't eat too much candy!

Sedona, AZ

I had the privilege of meeting another "trach mom" this weekend. Sarah and I "met" on the tracheostomy.com message board several years ago. Sarah lives in California and she came to Phoenix for the weekend. We drove up to Sedona - which is by far the prettiest part of Arizona. We went on a six mile (roundtrip) hike through Oak Creek Canyon. Even though I've spent most my life in AZ, I've never hiked Oak Creek before - it was amazing. I've definitely found a new hiking place! Here are some pictures from our day in Sedona.

Chapel of the Holy Cross

Sedona is known as "Red Rock Country"

Pictures from our hike through Oak Creek Canyon

From the road ... heading home

I just thought this was fun!

Somehow, I managed to delete the only two pictures I had of me and Sarah on my camera (it was a great picture of Sarah and a lousy picture of me ... but it wasn't intentional, I swear.)  It was a fun weekend. I hope Sarah feels rested and refreshed - she has a lot on her plate and was definitely due for some respite.

Have a great week everyone!

(sorry this is a repeat for all those who follow FB)

A Hilary Project

Hilary shared with us her first animation project, so I thought I'd share it with you.  It's a "cut-out" project - which is self-explanatory when you watch the 10 second clip.  Every movement involved moving the position of the pieces, taking a picture, moving the pieces, taking a picture, etc. and then putting it all together.  She said it was a lot of work and took a long time, but she had fun.  I think she did a great job!

Make video montages at www.OneTrueMedia.com

Hilary also said it's starting to get cold and she's having to wear lots of layers - a new experience for an Arizona girl (considering it was 102 degrees here last weekend).  Hilary says she's looking forward to snow.  I'm pretty sure come February or March, she'll be sick of that snow she thinks she is looking forward to. She's anxious to come home for Thanksgiving though - she's tired of cafeteria food!

The kids are back in school after being on Fall break for two weeks.  I'm sure it won't be long before we are "hit" with H1N1.  We managed to get through last year with no flu for any of us. I'm not optimistic that we'll  have the same luck this year.  Part of me just wants to get the dang thing and get it over with!

As of now .... all is well. Thanks for checking in my friends.

Happy Saturday

Have a great weekend and may the "pigs" stay away!  To all my friends who've already been slopped on, may you feel better soon.

************

"How people treat you is their karma;
 how you react is yours."

Diagnosis and DNA

There was a time in this journey that I wanted -- no, needed -- to know exactly what Jack's diagnosis was. I figured if I could get a diagnosis, then I could set out finding a way to treat (aka: fix) it. I spent hours upon hours on the computer researching and reading PubMed abstracts and articles.  I took my information and pressed Jack's doctors with my theories of what could be wrong with him. I was bound and determined to find a name for Jack's condition, provided it didn't contain the words "muscular dystrophy". There was just no way my child had muscular dystrophy.

Fast forward to July 2005 and a week of appointments in St. Louis that included a bronchoscopy and eye surgery on the schedule.  For some unknown reason the thought occurred to me, and I asked Jack's neurologist if she thought it might be a good idea to get another muscle biopsy from Jack while he was under anesthesia for his other surgeries. (Jack's first muscle biopsy was done when he was 5 months old.)  She jumped at my "offer" and the procedure was added to the list.  Incidentally, you'd never get a Children's Hospital in this City to coordinate the schedules of the ENT, the ophthalomologist and the neurosurgeon to perform their respective procedures on the same day, in the same OR, at approximately the same time, on the same kid!

A few months after we returned home, I heard from Jack's neurologist. Jack's muscle showed reduced alpha dystroglycan and he now had a diagnosis of "congenital muscular dystrophy secondary to reduced alpha dystroglycan".  There was no more denying it - Jack had muscular dystrophy.

In many ways, Jack's diagnosis finally allowed me to "let go".  People with muscular dystrophy don't get better (at least not yet).  There is absolutely nothing that can be done to get Jack walking, talking, eating and breathing on his own.  Jack's muscles simply won't allow it.  It was time to cut myself and Jack some slack and stop setting and trying to reach goals that were not, and never would be, attainable.

The next few years were preoccupied with Jack's spinal fusion surgery and recovery and just dealing with every day life.  With each passing year, I found it a little less difficult (but far from easy) to tell people that my son has muscular dystrophy.  Although, signing on with MDA as one of Jerry's kids is still something I have not done and likely never will.

Fast forward to October 2008 and another trip out to see Jack's team of doctors at St. Louis Children's Hospital.  During our visit with Jack's neurologist she told me about several new DNA sequence tests that could be done at the University of Iowa which could determine if Jack had one of the four known genetic mutations for Jack's type of muscular dystrophy.  It was also the first time that I heard the truly "official" name of Jack's type of muscular dystrophy -- Dystroglycanopathy congenital muscular dystrophy.

Given the severity of Jack's disease, I was fairly certain that Jack wouldn't test positive (ie: he wouldn't have the DNA sequencing) for any of these genetic mutations.  Because the testing is so expensive, they initially did DNA sequencing for only two of the genes: POMT1 and POMT2.  They came back normal.  About a month ago, they tested for the other two genes: FKRP and POMGNT1. When I was in New York visiting Hilary, I received an email from Jack's neurologist that provided in part:

"it should not shock you that Jack's POMGNT1 and FKRP sequencing came back normal.  I have a rule that parents are almost always right about their children and you guessed this."

She went on to tell me that all the tests comment that "it should be realized that DNA sequence tests do not detect all types of disease causing mutations.  Nucleotide variations in non-protein coding regions as well as whole or partial gene deletions and duplications may not be detected by this method."

During Jack's short lifetime, we've gone from an initial muscle biopsy finding of "myopathy, active chronic", to a finding of reduced alpha dystroglycan, to an official diagnosis of dystroglycanopathy congenital muscular dystrophy, to DNA sequencing to rule out four known genetic mutations for dystroglycanopathy CMD.  Amazing!

Jack's neurologist assured me that she would talk with one of the top researchers in the field of muscular dystrophy (Dr. Kevin Campbell at the University of Iowa) about Jack's lack of genetic diagnosis and discuss other research avenues.  I assured her that if Jack has taught me anything, it's that I won't get most my answers this side of heaven.

As I sit here today,  I have my much sought diagnosis and I'm certain that I could find many articles on PubMed discussing Jack's specific disease if I felt like reading up on it.  But the fact is, you lost me back in 2005 when I first heard the words "muscular dystrophy".  While I appreciate the fact that Jack's neurologist is being persistent in trying to find out as much as she can about Jack given today's technology, I'm no longer interested in getting all the information.  I really don't need to know what Jack's specific genetic mutation is.  It doesn't change a thing for Jack.  However, I realize in the big picture, it's important to study Jack in order to help others with his disease in the future.  So, to the extent Jack's brilliant neurologist and the researchers in Iowa (and elsewhere) want to continue to unravel the mystery of Jack, we will support them.

After all, my kid has muscular dystrophy, whether I like it or not.

Anybody Home?

Yes, we are home and all is well. I know I haven't updated in a while and it's simply because I don't have anything to update about. After the last two weekends of travel (which I absolutely enjoyed!) I'm content to just be hanging out at home doing a whole lot of nothing. Well, actually, I'm doing a lot more than a lot of nothing, but it's certainly nothing exciting (it's fun stuff like cleaning bathrooms, scrubbing floors, laundry, dusting, more laundry . . . )

As I sit here today, life is GOOD.  No sick kids, no complaints with nursing agencies, DMEs or insurance companies.  I've had some much needed time away, it was great to see Hilary, the other kids are on Fall break and things are going well.  I know better than to spend too much time worrying about when all good things will to come to an end because then I just end up missing out on enjoying all the good things.

So, enjoy I will.

***********************

A picture Eric drew ... one thing in particular stood out to me. Any guesses?

Apparently, after Jack dies ... according to Eric, he's still stuck in his wheelchair! I think Eric needs some RE (religious education) classes pronto! Hey Jenny, do you teach correspondence courses? :)

Have a great week everyone.

Carpe Diem!

Weekend in Rochester

Well, I had to break down and get a YouTube account because there is no other way to share the videos I create using the Mac on Blogger other than by YouTube. Frustrating! I took a lot of pictures this weekend with Hilary and it's easier to share via a slide show than uploading all the pics. I thought it would be fun to spice it up with a little Vivaldi. Enjoy!

(Unfortunately, you lose a lot of the vibrancy in the pictures when you upload them to a slideshow/video. Hopefully, you get a good idea of all the reds and oranges that are everywhere - it's spectacular).

It was a great weekend and I think Hilary enjoyed seeing us! She is definitely happy here and seems to really be enjoying her classes. I don't think she's feeling too homesick - which is a good thing, I guess.

I'm anxious to get home and stay home for awhile. All this traveling is exhausting and a pain in my rear - literally. I'll share more on that later.

On The Road Again

Mary and I fly out to New York tomorrow morning to spend the weekend with Hilary.  I'm excited to see Hilary and to get to spend another weekend enjoying beautiful Fall weather. We plan to visit Niagara Falls while we are there too.

There's not much to report on here at the Ranch.  All is well ...  everyone is healthy (knock on wood) and happy.  The kids have a 2 1/2 week Fall break starting next week, which should help cut down on the risk of getting sick for awhile.

Between Blogger and the Mac, I'm so frustrated right now. I wanted to share a video I made using iMovie (those of you who are on Facebook have already seen it). But, Blogger fails every time I try to upload it and iMovie won't let me upload the movie to OneTrueMedia.  Arg! I purchased a program that will allow me to legally convert the iMovie to a format that I can upload to OneTrueMedia, but after downloading the program, I can't find it on the damn Mac! Double Arg!  I could upload the movie to YouTube, but I'm not a big fan of YouTube.  I think it's just too big and too much exposure.

So there you go, I've got N-O-T-H-I-N-G for you.

I'll update from New York - with pictures of course.

As always, thank you for checking in.

Weekend Getaway

I had the privilege of spending this last weekend in Denver/Estes Park, Colorado with two very special friends. We found each other through the tracheostomy.com message board and our blogs and have been in touch via phone, email and blogs for the last year or so.  We finally decided it was time to meet each other in person, so Karen (from Maryland) and I headed to Denver to spend this past weekend with Jen.  Unfortunately, Jen was very sick and wasn't able to get away with us to Estes Park.  But, it was a nice weekend spending time with Karen and just relaxing and taking in the Fall colors of the Colorado Rockies.  The weather was perfect!

Jen lent us her car for the drive to Estes Park. When we returned her car on Sunday, we were able to spend some time with Jen.  Faith was sick too, so I only got a short peek of her, but she did flash me a big, beautiful smile before she fell asleep.  We also got to meet Jen's husband and Faith's daddy, Brian.  It was a great weekend and we are sorry that Jen was too sick to spend it with us, but one can never plan when they are going to get sick!

Me, Jen and Karen
(Jen wore a mask the whole time except for this picture - she was so worried she would get us sick).

And this picture is for Karen .... we finally got the freaking rock cracked.  Eric was disappointed that there wasn't a precious stone inside that would earn him millions! :)

(this was a geode I brought Eric back from Colorado)

It's back to the grindstone this week, but it's a short week for me.  Mary and I leave on Friday for Rochester, NY to visit Hilary for the weekend.  For someone who hates to fly, I'm doing a heck of lot of it lately.  All I can think of when I'm on the plane is "H1N1"  Eeekkk!!

Happy Wednesday!

Nothing like starting your day off with waffles, chocolate milk and Diary of a Wimpy Kid. It doesn't get any better than that!

Have a fabulous WednesDAY!

Fall has come to the Jungle

Fall has not arrived here in Arizona, but it has made its way to a certain jungle located in these parts.  It's still 100 degrees here in the desert, so Fall is no where near showing its face. But, you'll get no complaints from me - it's the price we pay for the beautiful "Winters" we get while most of the country is dealing with ice, snow and windchill.

Although, I have to admit ... I love the Fall (and the Starbucks Pumpkin Lattes that come along with it!) So, I thought it would be fun to bring a little Fall to Jack's room.

I'll get to experience Fall the next two weekends, as I'll be out of town visiting friends and Hilary in much cooler parts of the country. But, this is about as much Fall as Jack will see this year. Pathetic, I know.

Have a great week everyone.

Time and Experience

As a shuffle through a week's worth of mail on the kitchen counter, I find scattered in with the junk mail and bills an envelope with Jack's name on it.  I've learned not to throw anything away without opening it first because everything looks like junk mail these days.  Sure enough, the letter is from a collection agency.  My friends at Apria sent us to collections for 21 freaking dollars! This company that collects at least $3000 a month from us for Jack's equipment and supplies, sends us to collections for $21. Ridiculous!

But that's not the point of this post.

Five years ago a letter from a collection agency would have enraged me.  My "fight or flight" response would have kicked into high gear and my response would have been 110% fight.  I would have picked up the phone, cursing the entire time I was on hold and then likely yelled at the person on the other end who had the audacity to call me "Ma'am". (You know that condescending tone I'm referring to.)  I would have furiously pounded out a letter to Apria threatening legal action if they didn't remove my account from collections. I would have stewed all night about the injustice of it all, and then rushed into the office to fax the letter off to Apria first thing in the morning.

I would have done that . . . five years ago.

Now, I simply tuck the letter into my "Personal" folder that I shuffle back and forth between home and work every day.  My folder full of stuff that requires attention whenever I can find a few spare minutes here and there at work to deal with it. Today -- a good two weeks after it arrived in the mail -- I pulled out the letter.  I called Apria's billing department.  I calmly explained to them that we have Medicaid as our secondary insurance and that not only do we not owe the $21, it's against the law to bill us for it.  I calmly explained that for reasons I don't understand, they (Apria) unilaterally changed the party they bill as our secondary insurance.  I calmly explained that we've been getting our respiratory equipment from them for over seven years and that we've always had Medicaid as our secondary, that they have always been paid by our Medicaid provider until recently when someone at Apria decided to change who they were billing as our secondary insurance.  Based on the clicking of the keyboard I was hearing through the phone, the person at the other end was furiously typing his notes as I was giving him my spiel.  At this point, my call had already been escalated to the next level. (Which likely means nothing more than that the person answering the phone didn't want to deal with me, so he put me on hold hoping the call would roll over to the person sitting next to him.)  I provided contact information for the person at the agency they are supposed to bill as our secondary, and I was assured that the matter would be handled expeditiously.  I calmly ended the call with "I won't hold my breath, but thank you for your help today".

Now what to do about the collection agency threatening nothing short of imprisonment if I don't cough up the $21?  (Okay, so that's a bit of an exaggeration.) As I look at the letter, I realize it's addressed to Jack.  I remember that the monthly billing statements from Apria are addressed to Jack, and when I call Apria's billing department, they ask for Jack's date of birth.  Everything is tied to Jack.  Fact is, Jack doesn't give a rip about his credit score.  And, while I recognize that I'm personally liable for my minor child's medical bills, I'm not going to sweat over the $21 allegedly owed to Apria or the collection letter.  I calmly put the letter back into the folder and cross it off my list of things to deal with.

Done.  Calmly.   No ranting, no raving, no high blood pressure or spitting nails.  A simple phone call, a simple explanation and the ability to LET.IT.GO after that.

It's amazing what time and experience gets you.  You learn that "it is what it is" and all the screaming and cursing in the world won't change it.  You learn that you are so not in control, and you learn not to sweat the small stuff -- and the majority of it is small stuff.

I've lived so much of the last (almost) eleven years in a constant state of urgency and anger, with a "my way or the highway" attitude. (Well, let's be honest, I've probably lived most of my life that way.) And certainly, I still have my moments and there are still those times when my "fight" response kicks in.

However, time and experience have tempered the anger and have brought to me patience, confidence and perspective.  All things that make for a much better -- and healthier -- way to approach each day.

And if you don't believe me .... just ask the guy at Apria.

Necklaces Are Now Available For Purchase

The Willow Tree necklaces are now available for purchase. (See sidebar)  The new website for The Willow Tree Foundation is not ready yet, but I ordered my first shipment of necklaces and keychains and I wanted to make them available for purchase now.  You can purchase using PayPal or if you want to pay by check, please make it payable to: The Willow Tree Foundation and send it to P.O. Box 13145, Chandler, AZ 85248.  If you are paying by check, you can get the price of the piece by clicking on the "Buy Now" button.  I only have a few necklaces on hand, so the first to order will get theirs the quickest.  I will order more from the designers as orders come in, but the turn around time will, obviously, be longer once I sell those I have on hand.  The second necklace is designed by Kristen's Custom Creations  and it's a beautiful necklace too.  Kristen's design can also be put on a bracelet or key chain - if you want one of those, email me and I'll get it ordered.  Selling items via PayPal is new to me, so I have no idea how this will work, but I'm told it's easy and painless. Just make sure I have your email in case I have to contact you.

Thank you everyone!

He Doesn't Want To Live On The Moon

Tonight Jack was watching one of his Sesame Street videos. Yes, I realize that a ten year old should be well beyond watching Sesame Street, but he really likes the music and singing.  Except for one song, apparently.  I was buzzing around Jack's room, getting him ready for bed, giving him his last can of food for the day and enjoying the singing right along with Jack. Then, the song "I Don't Want to Live on The Moon" comes on and I glance over and see this face:

Apparently, he doesn't want to live on the moon!  You can't help but wonder how much Jack really "gets" when you consider that he has never been able to communicate to us what is going on in that head of his.  Jack's body allows for very little self expression.  Even his ability to smile has been progressively affected because of the weakness in his facial muscles.  Yet, every once in a while he reacts so deeply to what he hears, and it's usually when he is listening to a song.  I'll never know what it was in the song "I Don't Want To Live On The Moon" that triggered the reaction I captured tonight, but these random moments of expression are a much needed reminder that a wise soul, with feelings and emotions, likes and dislikes, and a gentle spirit is very much alive in that silent and paralyzed body of Jack's.  I often wonder about the "why" of it all.  But, Jack continues to remind me that he is very much here and he understands a lot more than most people will ever give him credit for.

Here's the song, in case you want to hear it.

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On a Hilary note  - she sent me a text today that went something like this "Because I'm not really fitting into my writing class, all the students just sign. It's likely I'll go into a new section. I think it's good for me, I just want to talk with others. Ok".

I can honestly say that I didn't think I'd ever see the day when Hilary would say that she "just wants to talk".  It makes me so happy that she's finally in a place where she is comfortable and willing to talk without worrying about what others will think.  

What a day.  All of it good.

Labor Day

Hope you aren't checking in for that certain "blog thought" I promised.  I didn't take get the opportunity to work on it this weekend.  It would have required me to sit down at my computer and think  . . . and labor.  It was Labor Day weekend after all, which I believe means that we are supposed to take a break from laboring, right?  I'll get it finished eventually, I promise.

* * * * * * * * * * 

It's amazing how one particular seven year old can turn my entire house into his playroom.  It's insane, actually.  I miss having a basement.  When we lived in St. Louis, we confined the girls and all their thousands of pieces of Barbie paraphernalia to the basement. I have no place to confine Eric and all his crap stuff.  For example, today my family room was invaded by army men.

Eric somehow convinced Mark that he needed these army men because he certainly doesn't have enough toys to play with already. Or maybe, Eric wanted a reminder of his Uncle who is in the Army (Ohio National Guard) and who will be leaving shortly for Iraq for his second year long tour.  Except that Eric really has no clue who his Uncle is because he lives in Ohio and we don't see him too often. So, that's probably not it.

Whatever the reason, Eric managed to entertain himself for several hours with these guys, so I guess it was worth it.  They've all been neatly thrown packed away in their container for the night.  

* * * * * * * * * * 

I promised Jack a trip out of his room this weekend.  Poor kid rarely gets out of his room, let alone his house (and yes, this fact is accompanied by much guilt).  We went for a walk around sunset, with camera in hand ... of course.

It was a typical, beautiful Arizona sunset.  And, just in case you are wondering, these pictures are of a neighborhood within walking distance from where we live.  We do not live in this neighborhood.  We live on the other side of the tracks street. But, it's nice to pretend on occasion. :)

* * * * * * * * * *

And for my friend Dana and anyone else who is wondering - Hilary is doing well.  She doesn't seem to be missing us at all! Her first official day of school was today (what's up with that!) She is beyond thrilled because she is on track to get into the school of film and animation next year (which is highly competitive) and she will spend this year taking classes to prepare her for the program.  I've already made reservations for Mary and I to fly out to see her the first weekend in October because that's her birthday.  I've also  booked her flight home for Thanksgiving.  I should own stock in Southwest Airlines with the amount of money I will be giving them over the next four years!

As always, thanks for checking in.  Have a fabulous rest of the week!

* * * * * * * * * * 

I already posted this on FB, but I'll share it again here because it made me laugh out loud:

May those who love us, love us; and those who don't love us, may God turn their hearts; and if He doesn't turn their hearts, may He turn their ankles so we'll know them by their limping.
(Irish Blessing)

Weekend Warrior

Just a typical Saturday morning in the Schrooten Jungle!

Chugging Along

I suck. I promised more regular updates and I've not come through.  For those who continue to check in on us, I apologize.  As a blog stalker myself, I know how disappointing it is to check in for updates and see the same old post day after day.

I've been working on a "blog thought" the last few days, but I'm struggling to finish it.  Ironic, since it's about my "struggles".  In an effort to increase my hours of beauty sleep (because God knows I could use it), I'm making a real effort to get to bed before 11pm on week nights, which really cuts into my blogging time.  I promise a post worth reading (well, I suppose you'll have to decide that) by the end of the weekend.

Life continues to uneventfully chug along.  You know, same $#$^, different day.  Not that I'm complaining, because I'm not.

Enjoy your Labor Day weekend and think of Jack if you happen to tune in to the Jerry Lewis telethon.

Thanks for checking in.  I really mean that!

It's 10:45pm .... 15 minutes before I turn into a pumpkin! Gotta go :)

Have a Happy Week

If you want others to be happy, practice compassion. If you want to be happy, practice compassion.

Dalai Lama

Have a HAPPY (and compassionate) WEEK my friends!

More Good News to Share

I received an email yesterday from the person at Johns Hopkins who has been part of the team implementing the "TouchStones of Compassionate Care" Program. His email provided, in part:

This past year we made a habit of handing out the stones and a copy of your "Dear Future Physician" letter to each physician resident that served a rotation in our pediatric intensive care. They were a hit! Folks really seemed to appreciate the thought that went into your letter and in the gift you made available. . . . It was so successful, in fact, we were wondering if there is anyway we could receive another supply of stones to be able to offer to future residents as they come to the pediatric intensive care portion of their training.

How totally cool is that! It just made my day. To know that Jack and I really can made a difference almost makes this journey worth it. (well, that might be pushing it.) So, where do I go from here? I get more stones to Johns Hopkins to start with. And then, I start contacting other Childrens Hospitals around the country and share with them the success of the program at Hopkins. After talking with the PICU doc who agreed to be the first to try the program (who was at Hopkins when the program was started, but who is now at Vanderbilt Children's), we both think that pediatric residencies are the best venue for this project because these physicians have the clinical experience needed to truly understand the impact of the program. I also need to find a way to raise money to support this program - the stones aren't cheap! Somehow, I'll get it done.

This has been a good week!