If I should die...

A couple weeks back, I was driving across town to purchase a special Christmas present for KayTar. Between school being downtown and KayTar's docs being in the medical center, I'm on the freeways nearly every day of the week, usually without incident. But on this day, that wasn't the case. I was in the process of changing lanes when the car in front of me (in the lane I was leaving) slammed on his brakes, so I had to hit mine so I didn't clip him on my way out. I'm sure I've done this loads of times without any issue, but for some reason THIS time, my car started fishtailing across THREE lanes of traffic on I-45. I was definitely not in control of the car and did not know how to fix it. I remember thinking, "When you are hydroplaning or skidding, you are supposed to turn into it..." but I couldn't remember what to do about fishtailing! But then the car was okay again and somehow, I never got hit. It could have definitely ended badly with the way my car was careening around. My first thought after I had control of the car again was, "OMG, there are so many things about KayTar's care that exist ONLY in my brain!" If something had happened to me, poor Josh would have been lost. He is very involved in her daily care, don't get me wrong...but I do all of the remembering. I know her schedule and when she needs feeds and meds and when her doctor appointments are and who her doctors are and who writes what prescriptions and what home health companies handle what and where all her records are...and and and!

As soon as I got home, I got to work on compiling some pertinent information for Josh. A lot of it was already fairly accessible, as I keep and online copy of the start of her medical binder on Google Drive and a physical copy by my bed, but it wouldn't have helped him any since I've never mentioned it to him or shown him where I keep it. The medical binder already had the following info (and the physical copy also has her latest notes from clinic, sleep studies, audiograms, ect):

-List of physicians/therapist/insurance case worker and all contact info
-Copy of her insurance card and SS number
-List of all meds, what she takes them for, when she takes them, and if they are PRN or daily, as well as her formula and oxygen information
-Equipment and supplies list (and I added what HHC handles what equipment and when to contact them, as well as how to find her glasses script info online)
- An updated Visual Guide to KayTar

In addition to this, I wrote up a walk-through of an "ideal" day in KayTar's life, a non-sick, run-of-the-mill sort of school day:

5:00am Nexium
6:15am Give 7 ml Augmentin and start feed ((dose) 240 ml @ (rate) 480ml/hr) of 8 ounces of Elecare 3 tsp Miralax, and 1 tbsp cornstarch
6:45am Feed over. Get dressed. Turn off O2. Brush hair and teeth. Pull hair into ponytail. Give 2 puffs of Advair. Socks/shoes on. Prep school feed (8 ounces Elecare, 1 tsp of cornstarch and water). Make sure glucometer bag is packed and is in the front pocket of feeding backpack. Pack lunch. Write note for her jacket pocket.
7:20am Leave for school. Bring backpack, lunchbox, jacket, pulse ox, and feeding backpack. If it is Monday, bring O2 tank and supplies (check with Mrs. H about the Augmentin that stays in the clinic to see if/when she needs more.). Drop pulse ox, feeding backpack, and oxygen in clinic.
11:00am She gets her glucose check and tube feeding at school.
3:05pm Dismissal. Pick up pulse ox from clinic either before or after dismissal time. On Friday, bring home O2 tank and supplies.3:30pm Give 7ml of Augmentin and start another tube feed. Do homework. She does her handwriting work on the paper that I have stored on my computer. [My Documents->My Pictures->September 2011->Hi-Write Paper] Most things she can do on her own, but she often needs help remembering the steps for ABC order. We do it this way (if you don’t understand from reading it, just read it to her and she’ll show you what it means): Write the alphabet on the paper. Go down the list and circle the letters of the alphabet that the words start with. If there are multiple words with the same first letter, then she writes 2, 3, 4, ect. near the circled letter. Then she goes down the alphabet and stops at every circled letter, finds that word, gives it the proper number. After all the words are numbered, then she puts them in order on her blank paper.
6pm Shower or Bath. Pajama time. Braid hair. Teeth brushing. 2 puffs of Advair.
7pm Give 10ml of Benadryl and dose of Nexium. Reading time.
7:30pm Bedtime and cuddles. Start oxygen at ¾ liter.
8:30pm Mix Elecare; 27.5 ounces of water + 22 scoops of Elecare. Lay out clothes for next day (both kids).
9pm 7ml of Augmentin and tube feed.

This is an ideal day...we both know it doesn’t always go like this, though! :) On the weekend, it all gets shifted around. Feeds are typically 4 hours apart, so set an alarm until it becomes second nature. Be sure to check her oxygen saturations periodically, if she is BELOW 96, start her on ¾ liter of oxygen and increase until sats are appropriate.

I also wrote a "troubleshooting" guide for if she is sick, kind of the thought-processes I go through when deciding how to treat her when sick. It won't cover everything, but these are the most frequent things we encounter:

Ketones/Hypoglycemia:
*When KayTar is sick, periodically check her urine for ketones. If positive, check every urine until they resolve and occasionally thereafter.*Check glucose in the morning when sick and when she is symptomatic during the day (lethargic, nauseated, dizzy/wobbly, “legs don’t work”). If lower than 70, give 2 ounces Gatorade. Recheck in 15 minutes. Give 2 more ounces of Gatorade. Continue until glucose is appropriate. If below 50, go to ER at Children’s Memorial Hermann and give them her protocol letter.
Coughing/Congestion:
*First line of treatment is Benadryl (10 ml every 4 hours) and Albuterol (2-4 puffs if coughing is not bad, a nebulizer treatment if it is bad, every 4 hours.*If the cough is not responding well to that, you can give her 10ml of Triaminic Long Acting Cough (dye-free). The other OTC cough meds make her manic, beware! If you ever have to use a different brand, do not give it after 2pm!*If coughing does not resolve after a viral illness or if she gets better (no more fever) and then spikes a new fever 1-3 days later, take her to see Dr. H...she either needs oral steroids or has pneumonia. This is her pattern.*When sick she needs increased oxygen support, make sure to increase her oxygen dose so her sats are in range and keep her on 24 hours until she is doing better.
Gut Stuff:
*Give 5ml of Ondansetron every 6-8 hours for vomiting.*If she feels too full after a feed, draw some out with venting/decompession tube.*If she is not tolerating formula feeds due to illness, slow the rate down (try 120ml/hr). If she still is not tolerating it, try slow drip Gatorade instead (a rate of 60ml/hr and a dose of 240ml will run in 8 ounces of Gatorade in 4 hours. Try to get 2 of these in during the day. Then run the pump overnight at 30ml/hr with a dose of 240 ml and she will get 8 ounces over 8 hours to keep her glucose up. Try formula at this rate the next day. When running formula over long periods of time, hang an ice pack with it. Continue to work the rates up from there until she is back to (or close to) normal, which is rate of 480ml/hr with a dose of 240ml.
Fever:
*I do not usually give meds for fever unless it is at/above 102 or she is bothered by it.*First line of treatment is 10 ml Motrin every 6 hours. *If Motrin does not break the fever or if it spikes back up prior to the 6 hour mark, you can give 10 ml of acetaminophen every 4 hours. Write down what time you give which med, it gets confusing in the middle of the night. If you know she needs both meds to keep the fever down, try to get into a schedule of alternating them every 3 hours.
*If she is feverish and ketotic/hypoglycemic and not tolerating feeds...or if she stops urinating or isn’t cognitively herself...take her to the ER at Children’s Memorial so they can manage her.

I put all of it on Google Drive and shared it with Josh. I also showed him how to braid KayTar's hair...you know, the important stuff. ;) It isn't everything and I don't think I can EVER cover all of the bases, but I feel like I got enough of the important stuff down in writing to make it considerably easier for everyone if something were to happen to me. I probably should have done it ages ago, in all honestly, but thinking about and preparing for your own death just feels sort of grim. Realizing how quickly and unexpectedly something terrible could happen was the little push I needed to finally take care of this!

Sometimes Mountains Move.

Last Wednesday, as I was in line to leave the parking garage at school, I read an email from our case manager at Transgenomic (the lab with the $17,000 test that might be able to diagnose KayTar). It said that she had spoken to our insurance and they had denied our appeal again, for the THIRD time. But she offered me an interest-free payment plan, you know, in case the interest was what was holding us back...not the $17,000! It was extremely frustrating and although I am not a crier (I hate crying), my eyes welled up with tears and I had to choke back quite a bit of emotion that was threatening to escape through my eyeballs. I vented my frustration to a couple of people, but otherwise kept it to myself. It was depressing and dwelling on it was not going to be helpful for me, so I made a decision to talk to KayTar's mito specialist about an alternate route to diagnosis and to find out if MDCP (Medically Dependent Children's Plan, something we are trying to get K into, but that is another post) might cover it...and then I decided to let it go and choose joy. I wasn't super HAPPY about choosing joy, but at some point, I just had to accept that letting myself wallow would not make me feel better and it would not change the outcome. I would have to wait and see what came next and decide to go for another round of appeal when I had more information. And I prayed.

I don't talk about my faith much here, but it is an integral part of who I am. I pray about things in our life and for people we care about and things going on in their lives, too...but in praying over our life, I rarely ask Him to change circumstances or fix things. I believe that He allows us to be challenged for a reason and if He wanted to intervene, He could and would. He knows my heart better than I do, I'm sure, and He doesn't need me to tell Him what I desperately want or need. I don't pray for KayTar's healing, I pray for wisdom for those caring for her, strength for Josh and I, joy for her, diligence to fight through the battles we face, and so forth. He created her just as she is and I don't pray away the struggles that come with it, I do my best to pray through them. Sometimes when I am too tired to pray for strength, I just simply pray that He would move someone else to pray for me. I know that mountains have a purpose and it isn't my job to tell Him where they belong, even when I am tired. He knows. So on Wednesday, I did not ask Him to fix it...instead, I told Him I was exhausted. I told Him that I was tired of jumping hurdles and just wanted to lay down in the middle of the track. I maybe flopped onto my bed to illustrate my point. I asked for strength and wisdom in moving forward, because dramatically tossing myself down in the middle of the metaphorical track was not a realistic choice, and I thanked Him for the encouraging people He has placed in my life. There was more, but that was the meat and potatoes of it. I felt kind of better. Less wallowy, more ready to find some joy and move forward.

Today, my cell phone rang. It was an out of area number and I answered it because I thought it might be related to Mito Camp (this weekend!). Instead, it was a manager at Transgenomic. She said that unfortunately, there was a lab error resulting in KayTar's test sample being ruined and they would need another sample. We've had this happen before, so it was not a real shocker. I said something like, "Well, we're having such trouble getting insurance to approve it anyway---" and she interrupted me and said, "Yes, I know you've been working with J to get it covered, but whether or not that happens, we will be running KayTar's sample immediately after receiving it and there will be no charge to you either way." And I said, incredulously, "ARE YOU KIDDING ME?!" She was very polite and said, "No ma'am, I've noted it in the chart. There will be no charge for the testing."  Then some very different emotions attempted to escape through my eyeballs again and I tried to suppress the urge to jump around until I was off the phone. It was miraculous! I don't know if the test will give us answers, but today it doesn't really matter. There was a mountain in the way and then it was gone! There are billions of more important things happening in the world today and every day, bigger prayers that beg to be answered, and I can't explain why He chose to move this mountain...for me...today. I just know that He did. Sometimes mountains move, and it is unbelievably breathtaking when it happens.

Ketchup.

1. I bought a new-to-me car on the 14th! The minivan was super nice, but it was guzzling an immense amount of gas with my commute into downtown for classes. If our calculations were correct, we were spending more on gas than the car payment! So, we traded it in the 2007 Dodge Grand Caravan for a 2008 Scion xD and I LOVE it! It is so fun to drive and the difference in fuel efficiency is insane.

2. KayTar is magic. Seriously! We went to lunch the other day and there was a display with a PacMan ghost in it. She says, "Aww, I wish I could have that." as we were explaining that it was part of the display, so she couldn't...the hostess said, "Sure! You can have it!" Then, as we were leaving, there were flower pens at the register and she said, "I wish I had one of those!" The next thing I know, the cashier pulled out two brand news ones and let KayTar have her pick!

3. Inspired by The Muppets, BubTar has learned to whistle!

4. I got some kind of nasty virus last week and was in bed from Friday night through Sunday morning basically. It was TERRIBLE! KayTar was so sweet, though, and when she checked on me, she told me, "You look GOOD! You're sooo beautiful!" Such a darling.

5. My semester is off to a good start. All of my classes seem interesting/not too taxing, and I think I'm going to love Sociology!

6. Words cannot express how much I love this photo of BubTar. He is the handsomest!

7. KayTar's stomach is a little better, but not 100% yet, or even back to 90% or whatever it was that she was functioning at prior to this little bump in the road. However, since we increased her meds, the pains seem less intense and more fleeting...but still there, which I don't like. She puked Friday night, too, no real reason. C'est la vie!

Seven is a lucky number, yes? Let's stop here.

I'll be back tomorrow (or thereabouts) with some theater rehearsal updates! :)

Happy New Year!

So, it is 2012. Sounds weird, right? We rang in the new year with good friends and game night. KayTar wanted to stay up until midnight, but gave up at 9:33 instead. I was going to do a big sum up of 2011 for the first post of the year, but I just didn't feel like it...so I'm not. 2011 was a mixed bag for us. KayTar was healthier (as far as infections go) than she has been in previous years, but she had a rough medical year on all other fronts. Headaches, GI problems, respiratory weirdness, ect. I spent a lot of the year worrying about her. It definitely wasn't all bad, though, there was plenty of love and laughter and time spent with friends and family, so I think it was a good year overall, because that is the most important stuff. Josh and I celebrated 10 years of marriage, went to Vegas, had a beach vacation, KayTar and I had a little weekend getaway to a downtown hotel...among all the other more run of the mill fun things we did. There were the less fun things, too; the gas leak and being without gas for 16 days, Calculus, my credit card being cloned, medical tests that weren't very fun. We started seeing KayTar's new specialist in 2011 and our hope is that in 2012, someone will finally be able to successfully diagnose her! I don't do resolutions, but that is my #1 wish for this year...and it is probably about as likely as most people sticking to their resolutions. ;)

There will be a couple of changes for me in 2012. I changed majors at the end of the semester, from Biological and Physical Sciences to Psychology. BPS was dragging on forEVER because of scheduling problems. Every semester, I've tried to fit in some of the science classes with labs, and every semester the classes have been scheduled at times I can't take them. It wasn't a huge deal in previous semesters, because I had enough basic requirements left to fill my schedule, but I'm done with that now and still couldn't make the labs work. They seem to only schedule them during the kids' dismissal time or at the time Josh gets home from work...meaning I'd have to leave before he was home since campus is an hour away. It just isn't workable. Nontraditional undergrads with two kids and one income can't afford medically savvy nannies to cover gaps like these. Sooo, I looked at my transcripts and reevaluated things and discovered that I'd actually be closer to graduation if I switched, so I did it. Also, the classes are at normal times and many are offered online, too, which is an added bonus.

The other big thing is that I'm almost certain that I'm switching tracks from premed to pre-PA. It has been of those long torturous decision-making processes, so I'm going to spare you all of that agonizing hemming and hawing...I've pretty much had my fill of it already. The bottom line is that this year, we saw possible disease progression in KayTar and that has made me reevaluate my priorities. I love medicine, that hasn't changed...but if there is ANY chance our time with KayTar could be limited in any way, I cannot/will not sacrifice 7 years of time with her. PA programs are shorter in duration and I could still work in a field I love. My end goal is primary peds anyway. I don't think I will ever look back and wish I had spent less time with the kids and more time in school/training (even if KayTar does go on to have a happy, mostly healthy, full life, which is our fervent hope)...but I can definitely imagine wishing the opposite. I don't want to set myself up for big regrets. While I never think we should live our lives in fear of what might be, I also think God sometimes uses circumstances in our lives to nudge us in the right direction...and this year has been one of those nudges. So this next semester, I'm not taking any prereqs for either program, I'm just going to sit on this decision (even though I'm pretty sure about it) for the semester and maybe through the summer too, and then move forward with a certain direction in the fall...so I'm not straddling the fence and wasting time by completing two sets of prereqs. For now, I'm just going to keep working towards finishing undergrad and keep taking things one day at a time with KayTar.

KayTar celebrating at 9:30. I love how she says, "It's midnight!"

Notes from the Wobble Board.

KayTar is having a pretty good week. Monday and Wednesday she got through the entire school day without having to visit the nurse (except for her daily visit for meds and pump hook-up), and Tuesday there were some small bumps, but she made it through. She's flirting with a little respiratory infection, but doing well in spite of it.

In PT, KayTar had to stand on this thing called a wobble board, it was a wooden platform on top of a rounded rubber pillow of air that forced her to work VERY hard to maintain her balance. She would get up there and her legs would shake and her knees would buckle and she would grab onto her therapist for dear life. Lately, it seems like I'VE been on the wobble board. This semester has been stressful for me. I was chosen to be part of a STEM majors honor society at the end of last semester, which initially I thought was great. I was under the misconception that it was simply a scholarship program for impressive students (because that is all they tell you when applying!), but it turned out to be so much more than that. I had to sign up for an additional course, which was just one credit hour, and from there I found out that there were multiple mandatory events outside of class time. The society itself had something like 10 mandatory extracurricular events (the list just kept growing!) and the one hour course had several in addition to that. The class also required a lot of reading, online participation, and group work...it was my most demanding course and made Calculus look like a cakewalk. For a NORMAL undergraduate student, I can see the benefit of all of these things, but for me, especially THIS semester with the way things are with KayTar, it was impossible. A few weeks ago, I attempted to withdraw from the program, but my advisor said she was willing to compromise with me on certain things, so I tried to stick it out for the semester...but things just kept getting more complicated with KayTar and I just COULD NOT have that hanging over my head. So I finally officially withdrew last week and I feel so much better. I hate "quitting", but the truth is that if I had known about all of the hidden requirements when I applied, I NEVER would have applied. I am so careful about my schedule, because I know that there is a limit to what I can balance and I was even more careful this semester because this summer was rough for KayTar and we are seeing a lot of doctors and going through testing right now. This program tipped the scales in a dramatic way and withdrawing from it was the right call for me...and for us as a family. So, whew!

I'm not sure what I'm going to do about next semester. It has been a long time since Josh and I have really been hit by the uncertainty of raising a kiddo who has an undiagnosed, unpredictable disease, but this semester has really driven that point home once again. This summer was difficult, this semester has been difficult, and Josh and I are both concerned that next semester will be more of the same for her. We are thankful that her motility medication is helping and heartened by the good week she is having, but it seems like abdominal pain, headaches, dizziness, and other things are constantly lurking. We both hope this is just a flare up and we hope that she is on the upside of it now, but we can't say that with any certainty. Josh, who is extremely laid-back, brought up the possibility of home school last week, and he is NOT pro-home school. We're definitely not there yet, but the fact that he brought it up at all shows how uncertain things have been this year...how much our day to day with KayTar has shifted. As far as my school goes, if I had to decide right now, I'd say that it would probably be best for me to take next semester off or go back to evening classes for a while. When I decided to go to school full-time during the day, things were simpler with KayTar and it was an easier balance to maintain, but now everything is topsy-turvy again. School is important to me, but KayTar is my priority...she doesn't always need me, but I want to be there for her when she does. Luckily, I don't have to make any decisions right now...I just have to keep my head down and survive THIS semester (which in spite of all the extra stress, is going pretty well), because as my favorite Bible verse says, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." And isn't that the truth!

To Do:

Cal I -> 1.1-1.4 (by Wednesday)

Medical Writing -> Read chapters 1 and 2 in  The Complete Guide to Medical Writing (quiz 9/15)

HIST -> Review chapters 17-21 for exam (either 9/15 or 9/20)

POLS -> Read pgs. 354-62, 367-86, 401-16; make cheat sheets (exam 9/14)

CSP -> Call zoo RE: group volunteering; read pgs. 7-122 in Service Learning; read pgs. 219-245 in Navigating Research; post to discussion threads for chapters

Personal -> Call pulmonologist RE: visit cost as self-pay; call insurance RE: reimbursement policy; do income verification check for insurance; call HHC RE: pump servicing and coverage under possible new plan, call HHS RE: switching plans; call possible new plan RE: coverage of therapies and DME

Drudgery -> Laundry; waiting for the city to come inspect the gas line so the plumber can start work on it (yes, STILL NO GAS HERE!)

What are you up to today?

First day of school...

FOR ME!

Here is the big takeaway message from today. It is HOT in Houston, like miserable, sweltering, entertain-the-idea-of-jumping-in-front-of-a-car-on-the-walk-from-the-parking-lot-because-the-ambulance-that-came-to-get-me-would-have-air-conditioning HOT. 22 record-breaking consecutive days of 100+ weather (that is without adding the heat index), with a forecast of the same for the rest of the week. BLURG. Unfortunately, this semester I did not get a spot in the parking garage, so I had to park in the lot...which is farther away. Walking from the garage last year was far enough for me, because it involved an uphill walk with a bag full of books. The lot is farther, and the walk is even LONGER because they are doing gobs of construction on the streets near the campus. So, the walk over the river (bayou) and through the woods (other parking lots and construction sites) up to the bookstore was long/hot enough. Then I got to walk back down the hill/through the maze with 6 college textbooks in hand, all the way back to the parking lot, before heading back out to the building my class was in. It was miserable. The humidity was oppressive and the wind was non-existent. I think I live in the wrong state! I was born in Alaska and I think my biological thermostat was meant to run a little bit cooler than this.

My first class was Calculus, taught by Dr. Pepper. No joke! My professor's name is Dr. Pepper. He seemed like a nice, even tempered guy with realistic expectations. The homework will NOT be online (hallelujah, I really, really hated the interface for the online PreCal homework last semester) and it will not be graded/mandatory unless we really do badly on the first test, then he'll start taking completion grades. 2-3 exams, 1 final, 5-10 quizzes with the easier questions from the sections. Sounds doable. We took a Algebra review pretest, which I do not think I did awesome on...but it isn't for a grade, so that is okay. After Cal, I walked waaaay up the hill again to the other building for Govt II. The professor reminded me just a wee bit of a leprechaun, and he is definitely a talker. We spent the entire class period going over the syllabus!

After that was over (and after the looong, sweltering walk back to my hot-enough-to-melt-crayons* car), I picked up the kids and headed to Meet the Teacher. We bought their supplies from the PTA, because it is a million times easier than tracking the items down, and dropped them by the classes. BubTar's teacher seems great (and I've heard great things about her), the kids met their new SLP and librarian (who gave the kids books, I think she knows the way to their hearts), talked with the nurse, and visited KayTar's classroom, although her teacher wasn't there due to a family matter. I think we are ALL ready for tomorrow! The good news is that I have no classes tomorrow, so I'll be around to help with any issues that might come up as we work out the first day kinks. I was supposed to be in class tomorrow, but I was taking that section for a specific professor and she emailed me tonight to say she got switched to a different section...so I searched for an online class at Josh's suggestion and found one! Now I'm only in classes 3 days a week. :) I was going to be missing a lot of that class due to KayTar's already scheduled appointments, so it really worked out well in the end. I just hope the professor isn't too demanding, that is always the risk with online classes. Honestly, I'm pretty thrilled not to have to walk to campus in the heat again tomorrow!

*Not just a figure of speech.

Tune in tomorrow for the rest of the 'Tars first day stories...theirs will include cute pictures, too!

Birthday Wish

Today is my birthday, I'm 28. Tonight when I blew out the candle on my pretend birthday cake at the Olive Garden while being embarrassed in public for the SECOND time today, I wished that KayTar will be diagnosed this year...before I turn 29. I know, I know...you aren't supposed to tell people what you are wishing for or it won't come true. I've been secretly (and not so secretly) wishing for this for YEARS and no luck, so I'll take my chances either way.

It seems like it might just be possible this year. I feel like she is finally seeing the RIGHT doctor, one who thinks this is solvable and who feels it is important that we figure it out. At the end of all of this testing and retesting, we might just learn something new.

In some ways, a diagnosis won't change anything. KayTar's ever-present medical issues will still be ever-present. In all reality, we will still just be treating symptoms and putting out fires as necessary. In other ways, a diagnosis will change everything. We can explain KayTar to the people involved in her care by building on the foundation of knowledge that comes from having a named condition. It is so difficult to explain the ins and outs of KayTar without having anything to build upon. She LOOKS normal and SEEMS normal most of the time, so it is hard for people, even people who know her well, to truly understand why she needs to rest more often than others...why she gets sick so easily...why she is going to need a wheelchair for relatively short distances soon...why she can't be out in the sun for long...why she needs a g-button...why she needs therapies...why she needs assistive devices in school...and so on. A diagnosis would give an provide us with a way to explain why for her body behaves differently than other children's bodies. A diagnosis would provide a community and understanding. It would provide a course of action.

A diagnosis probably will not provide a cure. I know that. A diagnosis may provide knowledge that is unpleasant. A diagnosis may be hard to hear. In spite of that, I can't imagine that we will ever wish to go back to this time of trying to find our way down an unknown path in the darkness, unsure what is around us or where we are heading. Not knowing what is ultimately causing her difficulties makes it hard to know if we are treating it appropriately at times. Whatever is going on inside her body has been happening for years and will probably continue to happen, a name doesn't change what it is or where we're headed...but gosh, it sure would be nice to FINALLY know! And hey, if it doesn't happen in the next 365 days...I can always reuse this wish next year. ;)

A-nevada-versary! Anni-vegas-ry!

We arrived in Vegas around 5:30 Thursday evening...slightly later than planned because our plane arrived late and needed a part fixed after we boarded. We settled in at the Aria, wandered around the casino a bit and then went out for a walk.

We caught part of the show at the Bellagio while we were out and then explored the inside a bit.

After that, we headed back to our hotel to freshen up for our 8:30 reservation at Craftsteak. When we made the reservation, we didn't take the time change into account, so it was a SUPER late dinner for us...10:30pm our time. It was super late AND super expensive. Holy COW. Literally, because it was a steakhouse. ;) It was also super delicious. But the price...it was roughly the equivalent of 2 weeks of groceries! I don't know that we will EVER spend that much on a meal again, but it was definitely an experience. I had a ceasar salad (with three little anchovies on top, which I had to set aside while their headless bodies quietly judged me) and diver sea scallops with a Craft colada to drink. Josh has a warm frisee salad with bacon, poached egg, and blue cheese dressing, a ribeye, and a pineapple upside down cake cocktail. We shared fingerling potatoes and honey sautéed carrots. It was delicious and EXTRAVAGANT. We made a pact not to eat anywhere we have eaten before or that we could get at home while on vacation, so this fit the bill for sure. We played a few slots on the long waaaaalk back to Aria. We went to sleep around 11:30...which was 1:30 for us. A late night for us old married folks with kids!

We started the next day with coffee and pastries from the coffee shop and phone calls home to check on the kids. It was KayTar's kinder graduation morning and we were missing it (our trip was scheduled before the date was set)! My parents went so she had special people there who took photos and video for us. The school librarian sent me photos via text, how sweet is she? And I talked to KayTar after the ceremony, too. She was a little sad that some of the kids had balloons and flowers and she didn't, but my mom told her she would get something special at pick-up time. Wasn't she a beautiful graduate?!

After that was over, we headed out for the day. We walked back over the the MGM and took the monorail down to Harrah's and the Imperial Palace and wasted some time gambling before lunch at Hash House a Go-Go. Josh saw it on Man VS Food and he likes to plan vacations around at least one MVF meal. We had the sage fried chicken eggs benedict. It was YUM!

After lunch, we walked a LOT. We went to the Venetian and Mirage and back to Harrah's to grab the train back. We stopped at Bally's/Paris on the ride back and went back to Aria that way. I loved Paris...it was so cool inside. I was so tired and my knee was hurting so much that I didn't really take any photos inside. We crossed over to Bellagio and took the tram back to our hotel.

I was beat when we got back and my bum knee was being VERY bummy, so I elevated it (the only use for all those extraneous hotel bed pillows) and watched Law and Order while Josh went to get coffee for us. After recuperating, we went down to the casino for a while and then headed to NYNY for dinner, which we also loved! It was very cool inside. We ate at Broadway Burgers that night and it was good. Josh had a chicken burger with tomato, white cheddar, and a fried egg on it. I had a chicken burger with mozzarella, bruschetta, arugala, and a parmesan crisp on it.

 After dinner, we gambled a little, mostly at our Munny slot, and then rode the roller coaster once our dinner settled. It was AWESOME! Great, great ride. Then we went down to Bellagio for the fountain show, and back to Aria, gambled a bit, and headed upstairs to soak my knee in the amazing bath.

On Saturday, we had coffee, got ready, and went to Monte Carlo for brunch. It was yummy! Then we gambled a bit and I won $55 at roulette, another $55 at the Munny slots, and then another $38 at the Munny slots before going up to pack and leave.

It was a fabulous trip and we are already ready to go back! It was great to spend some time together without all the busyness of normal family life, but I think next time, we may stay somewhere kid friendly and bring the kid's along...and maybe my parents so we have an evening sitter! :) Although, we've got a lot of saving to do before that happens!

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It has been an entire decade...

Since these two kids got married. I was 17 and he was 18. We met on the Internet when we were 13! I'm sure a lot of people thought we were crazy and wouldn't make it, but here we are a decade later, still happy and even more in love...with 2 kids, a house, a dog, a cat, a guinea pig, a snake to show for it! 

Today we are flying to Vegas to celebrate! WOOHOO! :)

In Photos: The Old Days

I went through a box of old photos yesterday and found these gems. Josh and I, from 8th grade to 12th. That first one was taken in his grandma's house...which is now our house! That little guy in the photo is Josh's brother, who is in his twenties now! Gah! The second one is from a strip of photo booth photos...I edited out the ones where we were sucking face. Hahaha! We've officially been together FOREVER.