Home again... thoughts on our situation.

So, here is the update you've been asking for regarding Mary Hannah's condition:

Physically, she's fine. We have insulin and all of the associated paraphernalia. In fact, she got a whole lot of cool stuff from the makers of different diabetes equipment. Here is a partial list of some of the items she was given today at our "Diabetes Education" meeting:

Rufus: the bear with Diabetes
A pink One-touch glucometer
A JDRF/Accu-Check backpack
BD getting started Take home kit
A freestyle touch lighted necklace
a pink camouflage carry case for her insulin supplies
two copies of the Calorie King nutritional guide
Several children's books about being diabetic
...and lots of other stuff

The meeting itself was pretty smooth. The Diabetes Educator (DE) recognized that we knew most of what she was supposed to go over and told us just to stop her if we needed to refresh on any particular item. One thing that we did discover (and somehow missed before) is that when ketones are high, we should treat them with water, continues insulin and inactivity. That seems counter-intuitive because exercise causes blood glucose to drop, generally. But when you are already battling high ketones, exercise exacerbates it because ketones are a by-product of rapid fat usage by the body. So, the more you exercise, the more fat is being burned and the more ketones you are introducing. So, the next time the kids have moderate to high ketones, no karate for them!

MH did well almost the entire trip. She did great getting her Lantus shot in her tummy and her finger sticks all day whenever we needed to. She has revised her position on how much it hurts ("It isn't as bad as I thought..."). Humalog shots in her arm are handled with breathing out as she gets the injection. She even tried to count all her carbs at lunch (A bean burrito, chips and queso and sopapillas). She was glad to see Grammy and Steve, who drove from Enid to meet us for lunch. All in all, a nice trip. Except for the fact that HAVING DIABETES SUCKS.

During down time in the car, MH wrote in notebook:
MH: Why did I have to get diabetes?
Amelia: I don't know, baby. I wish I had a good answer for you.
MH: Me too, Mommy. Not fair! Not fair! Not fair! Not fair! Not fair! Not fair! Not fair! Not fair!
Amelia: You are right. It is not fair. And it is O.K. to feel that way. But at some point you will need to accept it and do your best to deal with it and take good care of yourself. I love you and I am proud of you.
later, she wrote:
MH: I don't want shots, Daddy. It's not fair! I wish I didn't have diabetes.
and then, in large letters on the rest of the page: IT'S NOT FAIR!!!!!!

On the drive home, she started sobbing uncontrollably. In retrospect, it was probably a mini-panic attack or anxiety attack, but she wasn't making any sense and couldn't stop crying, even for a moment. I got out her glucometer and tried to get a reading to see if she was having a low blood sugar moment, but after three tries (her fingers didn't bleed very much and the meter was acting funky, I got very frustrated and Amelia ended up having to take over and get it done) we finally got a reading. She was over 500 mg/dl. So, we gave her some more insulin and then I held her for almost 10 minutes in the chilling wind beside the car as she sobbed. She was thinking about having to go back to school the next day and was worried about how her friends would react. What would she tell them if they have questions? What if they didn't want to be her friend anymore? What if they got grossed out because she had to stick her finger and check her blood everyday? What if.... what if... what if....

My poor baby.

I know in my head that this will all be okay in the end. Diabetes is a chronic, incurable disease, yes... but... it is very managable and treatable. I know that with few exceptions, she will have happy, healthy, normal life experiences. But as her Daddy, I grieve, I hurt, I ache for the things she'll have to put up with that other people just don't understand. Four years ago, I went through the same emotions with Ethan. But we had come to terms with his condition. We'd taken solace in the knowledge that for all practical purposes, he's never known anything different for himself (he was diagnosed at 18 months). We'd found our "normal". Things weren't the same, but they were okay.

On Tuesday, before we went to the hospital, I was having anxiety because I feared that Mary Hannah did have diabetes, but I hoped, I prayed that we were wrong. When the doctors confirmed the diagnosis, my heart broke. Shattered. All the feelings, fears, worries and anxiety that came along with the diagnosis came rushing back. Is this how cancer patients feel at checkups when they find out that their cancer has returned?

My faith reminds me that God is close to the brokenhearted (Ps. 34:18), he saves those who are crushed in spirit. I don't doubt that God is present and hurting along with us. But my faith is at war with my feelings. I have the same questions that Mary Hannah has: Why, God? Why her? Why our family, AGAIN? I have joked before that if God doesn't give us more than we can bear, then he must have a pretty high opinion of us... but I am not in a joking mood.
I'm not looking for solace here. There is no need to comment on how God is good and he will take care of us. I KNOW that.... I'm just venting. I'm told by experts in the field that this is healthy. God is big enough to handle my anger.

Mostly, after several days, I'm worn out. I want every one to be as upset about this as I am, and although I'm comforted at the response of so many people (from close friends and family to obscure people I don't remember adding as friends on FB), part of me is shocked to see how life seems to go on as normal for everyone around us. I have to give a lot of thought about how to answer people who ask how we're doing. Do I give them a full answer with technical details they will neither understand or care about or do I thank them for their concern and give them the Reader's Digest/Sunday Morning answer? That is not to say that anyone is insincere or that I am being rude by saying that most people won't understand. It just is how it is.

Tomorrow, we'll wake up and do what needs to be done: check the kids' BG, feed them breakfast. Cover their carbs and give the appropriate shots. Make their lunches and label the food items with their carb content. Make sure they have emergency supplies to carry with them at all times. Over the course of a typical day, Ethan and Mary Hannah will prick their fingers 4-5 times to make sure they have blood sugars in the proscribed range. Ethan has a pump, so he can just press buttons to deliver his insulin, but MH will have to learn (eventually) to measure out the appropriate amount of insulin, not too much and not too little, inject herself and get back to being a "normal" little girl without being embarassed or ashamed by her condition.

Again, I know, I know there are so many upsides to this situation. It could be worse. Amelia pointed out that at least, we have the *same * chronic illness between the two of them. Just so you don't think I'm sliding into the pit of despair, here is a partial list of all the ways that God has blessed us in this situation:

- we recognized the signs and caught it before she went into a diabetic coma
- it was MUCH less traumatic than Ethan's diagnosis
- MH is bright and smart and is dealing with it as well as can be expected
- We have the supplies on hand. We didn't even have to go to the pharmacy. We had syringes and insulin on hand from Ethan's backup supplies
- We are probably some of the most well educated and prepared parents for this circumstance.
- God has surrounded us (and continues to) with a support network of family and friends who shower us with concern and care and tangible help in the areas we have needs.
- We have jobs that are flexible to allow us to respond.
- We have insurance that helps us cover the medical bills
- We know the best Pediatric Endocrinologist around and they set us up with an appointment the next day. Ask other Abilenians about their DX experience.

I could go on, but you get the point. I know and recognize God's goodness in the midst of our broken-ness. But my heart still hurts for my baby. My babies. I pray that God will continue to help us in the stewardship of these precious gifts as we strive to live for him.

*sigh* it is almost 2am and I have a long day tomorrow... Night, folks. Thanks for your prayers.
-jeff

Diabetes update!

Mary Hannah says, "Thank you for the comments about me trying to get better. I read all of Daddy's notes on Facebook and this blog. Lucky Bear says 'thank you', too."

I've posted a few pictures from last night. The latest update (as of just a few minutes ago) is: our Doctor has coordinated with the Pediatric Endocrinologists at OU Children's in OKC, which is where we take Ethan for his checkups. We've got some preliminary numbers for how much insulin to give her, so we're set until we can have an actual visit. They want to see us tomorrow at 1pm, so it looks like we'll need to do some schedule shuffling, but we'll make it. Thanks for your thoughts and prayers. We love you all and are very much feeling your concerns and love flowing our way.

Kissing my baby.

Oma was driving home from Dallas and came straight up to see us.

Matt graciously let us borrow Heather, who provided moral support and Tacos.

MH got to play on the laptop and update her Webkinz. Lucky Bear kept her company the whole time.

MH was in remarkably good spirits after getting her IV set up.

Heading home after a long afternoon. Life keeps going.

Again?!? C'mon, God!

So, we're in the hospital again. It is 9:20pm on Feb. 3, 2009. We've been here since about 6:30pm. It is issues with diabetes, but the patient this time isn't Ethan, it is Mary Hannah. In retrospect, we've seen the signs over the past week. She's been drinking a lot, going pee more than normal... I noticed her breath was stinky-sweet and commented on it the other day. But again, we wrote it off to her being sick recently. However, yesterday, MH started complaining of some unusual things and Amelia got nervous and we questioned whether we should check her blood sugar. Part of us didn't want to check because we thought we might be overreacting because of our experience with Ethan. But, we ultimately figured that it was a small price to pay to make us feel a little less anxious by assuring us that there was nothing wrong with her blood sugar.
So, this afternoon, I got out Ethan's glucometer and we all checked our blood. Mine was 104 (normal adult BG is 80-120). Nana's was 119. Ethan was running pretty high at 440, but I gave him some insulin from his pump and he was good to go... then I checked Mary Hannah. Her blood glucose was 494! Amelia checked her later this evening and it was only down to 414. So, we brought her to Hendrick and they confirmed our fears. MH has been super brave and they've got her on a saline drip to help flush her blood out and get her BG back to normal. Tomorrow, I suppose we'll get with her doctor and start working on a plan to get her on an insulin regimen. Thank you all for your concern. Medically, MH is fine and we know how to deal with diabetes... but emotionally, we're kind of reeling. We've come to terms with Ethan.... but ... man.. this sucks. More ranting/venting later. Keep us in your prayers. We love you all.

-jeff & am

Tagged and Bagged

I don't usually give in to the phenomenon of "I've tagged you in this note, now you have to follow the instructions and tag others..." but there are exceptions to almost every rule:

25 Random things about me.

I won’t call them facts, because facts don’t exist. I learned that recently from a discussion about post-modernism. Facts are a social construct, created to ease our anxiety about being powerless in the face of the random chaos in which we exist. Facts are only how we choose to understand and make sense of life. Facts are the enemy of truth. That said, let’s proceed:

1. I have a secret dream to one day star in a production of “The Man of La Mancha” as Don Quixote. If I don’t get the lead role, I’d gladly play Sancho Panza if I can manage the falsetto needed.

2. I’ve discovered that I enjoy having someone else wash my hair. Apparently, the Wal-Mart haircut places include a shampoo in the cost of a cut… so instead of paying $7.00 for a cheap haircut, I’ll pay $12.95 for a cut and a wash. Sometimes you have to ask them for the shampoo, but since you’re ALREADY paying for it, make sure you get it. I now factor the amount of my tip on how long/vigorously/luxuriously my scalp is massaged.

3. I love being a dad. This isn’t a secret (I hope), but it is well worth mentioning. When we were first married, Amelia was worried about my fatherhood ambitions when I was reluctant to hold other people’s babies or dote on small children. As it turns out, I am the best daddy in the world (just ask my kids or my wife!). It makes a huge difference when it is your kid.

4. Fatherhood has given me some experiences I never thought I’d have. For instance, I have lost 13 games in a row of Candyland. I’ve seen the movie Cars over two hundred times (okay, props to my buddy, Timothy Dodd for the last 150). For almost a year, I came home everyday to hear my son greet me : “Mr. Incredible! You’re home!” To which I would reply “Thanks, Dash.” I have developed a more than passable method for fixing hair in pigtails. Wow, I could go on and on… but I’ve got 21 more things to come up with…

5. Until I got my iPod touch recently, I have never had much of a desire to listen to my own personal music (ala walkman, personal cd player). Now, I’m really enjoying throwing on my headphones and zoning out.

6. The only interest I have in any professional sport is for social reasons. I secretly laugh at people who know the stats for their favorite teams and players and who are obsessed with keeping track of the same. The fact that I am intimately familiar with the 5,000+ Star Wars:CCG cards I own is in no way related to my friend’s obsession(s) with sports.

7. At the recommendation of my friend, Matt Loomis, I purchased a Mac two years ago and I haven’t regretted it for a moment.

8. I usually wear a pair of shoes until they are worn out. Then I buy another pair. I have a pair of black dress shoes and a pair of sneakers. Any other shoes I own are the worn out ones that I just haven’t thrown out yet.

9. I prefer regular Oreos ™ to Double-Stuft.

10. I went to the Texas State competition in Cross Examination Debate my Senior Year of high school. My partner, Hayley Hollis, and I lost the first two rounds and spent the rest of the day goofing off.

11. I spent from 2nd grade to 7th grade living in Europe. My father was in the Air Force and we lived in Athens, Greece, Kaiserslautern, Germany, and Kleine Brogel, Belgium. I also attended school at an international school, AFCENT, in Holland.

12. I have never broken any of my own bones.

13. I fell in love on my honeymoon…with Aussie Cheese Fries from Outback Steakhouse. I’d never eaten there before and Amelia assured me it would be awesome. It was. It is.

14. I used to prefer Peanut M&Ms™ to regular ones. Now, I prefer the original M&Ms™.

15. I played Everquest, a MMORPG, for almost 5 years. My highest level character was a 73 Gnome Necromancer named Abihu. I played primarily on the Prexus server. I was not addicted. I quit on my own, with no intervention required.

16. I have worked consecutive jobs, without being unemployed, since I was 16 years old, with the exception of an emotionally devastating layoff from my last ministerial position, which resulted in a 3 month stretch where I was (in my semi-official opinion) almost clinically depressed.

17. I have recently taken up the hobby of photography, which I absolutely LOVE. With the exception of an elective class in my undergraduate days, I am pretty much self-taught (with some able coaching and inspiration from some photography friends). Check out my website: http://emerysmemories.googlepages.com or look at my albums on Facebook.

18. Until I came to college, I didn’t have any really close friends (with one or two exceptions)

19. I climbed (but did not summit) Mt. Whitney in Colorado.

20. I part my hair the way I do because I think that if I part it the way it naturally falls, I look too much like my dad. (He’s not bad looking, but I just wanted to be different)

21. The simplest thing that gives me the most joy is opening the cabinet at home and pulling out a tumbler from Eskimo Joes. They are the perfect size to hold the quantity of beverage (plus ice) that I enjoy.

22. I love jokes. I pride myself on being able to recognize 90% of the jokes that I hear. I am a bit of a joke snob and almost can’t stop myself from ruining a joke that I know when someone else is telling it. I really have to hold back. On the other hand, when I hear a joke that I’ve never heard before, I get very excited. For my all time favorite joke, check out: http://jde95f.googlepages.com/hahahahahahhahhaaha!

23. In my high school senior yearbook, I was voted “Most Flirtatious”

24. I am aware that I talk too fast, sometime slurring my words. I know that I am a know-it-all. However, I like to think that I am also kind with my words, generous with my praise and generally positive in my disposition. In my mind, being really nice somehow balances out being an arrogant snob.

25. I make a wonderful French Toast meal.


Ok, that is enough for now. Thanks to Jeremy for tagging me and giving me an excellent reason to avoid writing casenotes. I won’t perpetuate this procrastination tool of Satan by tagging anyone else, but my intense desire for validation demands that I make this request: If you’ve read this and enjoyed learning anything new about me, please comment. ☺ Have a great day!

Hi, all. Time for a quick (really!) survey. Take a minute and give a few clicks to help satisfy my curiousity.



Thanks for your help. Send your friends to this blog and have them click to help me out as well. Thanks!
-jeff

A little taste of Christmas

Hello, all. Thanks for stopping by. There are a few readers who are waiting for videos/pictures of our tribute to greed and gluttony last night, so here you go. Just feel fortunate that I took time away from playing with my camera, portable printer, new lenses, spy 90 degree angle adapter, DVDs and Wii to put this little post together!

(Rich, Jen and fam... thanks so much!)




And Grammy, you are so special and we love you so much! Hope you all had a wonderful Christmas. Blessings in the new year. Stay tuned for an update with more pictures and a year-end recap. Love you all!

time for a crazygonuts quiz

So I got this email....

1. Put your iTunes on shuffle.
2. For each question, press the next button to get your answer.
3. YOU MUST WRITE THAT SONG TITLE DOWN NO MATTER HOW SILLY IT SOUNDS!
4. Tag 10 friends who might enjoy doing the meme as well as the person you got the meme from.

Questions:

1) IF SOMEONE SAYS "IS THIS OKAY" YOU SAY?
The Motions by Matthew West
It’s all okay when you’re just going through the motions.

2) WHAT WOULD BEST DESCRIBE YOUR PERSONALITY?
You’ll be in my heart by Phil Collins
I’ve been told that I have the bad habit of finding the best in people…

3) WHAT DO YOU LIKE IN A GUY/GIRL?
Everyday People by Billy Joel
I like people. Leave the pretension at home

4) HOW DO YOU FEEL TODAY?
Made to worship by Chris Tomlin
And everyday!

5) WHAT IS YOUR LIFE'S PURPOSE?
Life means so much by Chris Rice
Hahahaha I was just thinking, “Man, these are deep questions for a random quiz to answer!”

6) WHAT IS YOUR MOTTO?
Smell the color 9 by Chris Rice
That’s how I roll…

7) WHAT DO YOU THINK OF YOUR PARENTS?
Sea of Faces by Kutless
Who is my mother? My father?

8) WHAT DO YOU THINK ABOUT VERY OFTEN?
Race car ya ya’s by Cake
… where you can’t change lanes. Where fuzzy dice still hang proudly like testicles from rearview mirrors

9) WHAT IS 2+2?
Sometimes love by Chris Rice
Would you believe I have several Chris Rice albums in my playlist?

10) WHAT DO YOU THINK OF YOUR BEST FRIEND?
You are my king by Newsboys
My best friend… Jesus is my best friend… Jesus is my best friend… I am not alone.

11) WHAT DO YOU THINK OF THE PERSON YOU LIKE?
12 days of Christmas by Reliant K
It is still only 1 day, Amelia, no matter what the song says…

12) WHAT IS YOUR LIFE STORY?
Cornerstone by Day of Fire
I knew it was pivotal to my history…

13) WHAT DO YOU WANT TO BE WHEN YOU GROW UP?
Safe and Sound by Matthew West
And happy… and rich… and …

14) WHAT DO YOU THINK WHEN YOU SEE THE PERSON YOU LIKE?
Back where you belong by Newsong
…. By my side, baby.

15) WHAT DO YOUR PARENTS THINK OF YOU?
Sadie Hawkins Dance by Reliant K
Dunno… I got nuthin’

16) WHAT WILL YOU DANCE TO AT YOUR WEDDING?
You raise me up by Josh Groban
Innuendo, anyone?

17) WHAT WILL THEY PLAY AT YOUR FUNERAL?
I go to extremes by Billy Joel
If it is my funeral, apparently, I did!


18) WHAT IS YOUR HOBBY/INTEREST?
Opera Singer by Cake
I play the part of the Fat Lady ™

19) WHAT IS YOUR BIGGEST SECRET?
I’m Lion-O by Reliant K
Thunder, thunder, thunder cats! Ho!

20) WHAT DO YOU THINK OF YOUR FRIENDS?
Why does this always happen to me by Weird Al Yankovic
If you met them, you’d understand.


21) WHAT WILL YOU POST THIS AS?
I’m gettin’ nuttin’ for Christmas by Reliant K
Apparently, I ain’t been nuttin’ but BAD.