Beth Moore

Here's a video from the Beth Moore conference we went to a couple weeks ago. I'm actually in one of the pictures, see if you can find me! ;) I'll give you a hint... There's a young girl in the picture with her mom at the same time. :)

http://livingproofministries.blogspot.com/2009/08/lpl-fargo-nd.html

Home from Houston

We left early Monday morning for Houston. Kylie was really excited to fly on the plane since she doesn't remember being on one when she was 9 months. I remember it all too well however! She cried most of the time and passengers were giving me tips on how to get her to stop crying. (insert eye roll here) This time however Kylie did fine while Emeric was the bearer of plenty of loud noises. Mostly random screeching.

We landed at 12:30pm Monday and headed to check into our hotel. We had plans to go to the zoo and decided to go right away because it was supposed to rain the next day. It was pretty hot so Emeric was tuned out most of the time and not nearly as excited about the animals as last time. Kylie had only ever been to a zoo once so she was excited! I took her in the reptile exhibit and showed her all the snakes. We saw one(at least 10 feet long) lying in the water and Kylie looked at me, very surprised and said, "Mom, is that snake waterproof?" I laughed and said it looked like it was.

After the zoo we headed to the mall, which I was very proud to find on my own. Well, and with a little help from Mapquest. Houston is the 4th largest city in the U.S and I'm not exactly used to driving in big cities. Minneapolis doesn't even come close!

Tuesday morning we got up and left right away for our appt. A nurse weighed and measured Emeric and asked if we were from Michigan. I said no, we were from MN and she said, "Oh, I grew up in MN and I knew from your accent you were from somewhere up there!"

I thought for a split second about throwing her off with a few "ya'lls" but I didn't. And only because it was just her there so referring to her in the plural sense didn't seem right, not because it's completely unheard of for me(or most Minnesotans for that matter) to use ya'll. I have thought about starting though. It seems cool.

Anyway...

The appt. went well. Thankfully this time there was only one med student with instead of 5 so that meant only having to explain everything twice instead of 6 times! If you read Emeric's caringbridge than you've already heard what we found out at the appt. so in that case feel free to skip down. :)

All of the tests that we ran after seeing Dr. Koenig in February were normal. She thought that because his B12 levels were so low that it was possible he had primary deficiency in being able to metabolize B12. Since this isn't seen commonly with mitochondrial diseases she believed there was another primary condition going on. She doesn't believe this anymore. Mostly because there's a criteria used in determining if a person has a mitochondrial disease and Emeric qualifies as having a "definite mitochondrial disorder" under this, very specific, criteria.

Because mitochondrial diseases are relatively new much is still being learned about them. The muscle biopsy has always been considered the "gold standard" in terms of diagnosis and only recently are doctors realizing that not all patients with mitochondrial diseases have abnormal muscle biopies and if they are abnormal it isn't always in the way first thought. That's true of Emeric. His biopsy is abnormal but not in a "typical" way so that threw them off. However, because he has involvement in more than 3 organ systems, has lab abnormalities that prove the mitochondria aren't healthy and changes on his muscle biopsy they've determined that this is likely a primary mitochondrial disease.

Dr. Koenig did say that maybe 5 years from now Emeric will present with a new symptom that will lead them to find a different diagnosis but it's unlikely because he fits so well with a Mitochondrial Disease. Also, the doctor was hesitant initially to diagnose him with a primary mitochondrial disease because then doctors stop looking for all other conditions but now they have tested Emeric for everything they can think of and he has none of the diseases they've been looking for.

What this changes is that it means we stop looking for potential primary conditions and assume that the mitochondrial disease IS the primary condition. We approach it mainly from the standpoint of managing symptoms.

I trust Dr. Koenig because she has been very cautious in diagnosing him before she really felt 100% sure.

So, our official diagnosis is still Mitochondrial Disease but without the "unknown metabolic disorder causing secondary mitochondrial dysfunction". Hopefully that makes some sense. I know it's all really confusing!!

Prognosis is still largely unknown. Mitochondrial diseases are considered life threatening and life limiting. There is no cure but the diseases, while progressive, progresses much differently in everyone so there's really no way of saying at this point what it means for him long term. It does mean this isn't something he will grow out of and it is an explanation for all of his issues.

For now, I'll leave it at that.

I also got a call while I was there from Kaydence's pulminologist. She was on antibiotics for 6 weeks for chronic sinus infections. A few weeks after the antibiotics were stopped I felt like she had another infection so we took her in for another x-ray. Turns out she does have another infection. So, she is on antibiotics AGAIN and steroids for 6 days. She will see the doctor in a few weeks and he's assuming she's going to need her adenoids removed. Let's hope this is the case because if it isn't her adenoids causing the problems it's likely a more complicated problem to try to fix. I'm going to stay hopeful that it's her adenoids and that once removed the infections will stop and in turn this should help her asthma.

So, we left Houston with a lot of appt's! Emeric needs to see a nephrologist for his kidneys because there may be a potential issue with his kidneys(we've seen some suspicious things in his urine tests), he will have tests done and sent to an immunologist because there are some "off" things with his blood, he will have a hearing test done, see an opthalmalogist to check his eyes again just to make sure everything is still healthy and he'll have a blood test done to potentially determine genetic inheritance of the mitochondrial disease.

Kaydence has an appt. next week and then in 3 weeks with the pulminologist.

One funny thing... When the pulminologist called he said he would call in a couple prescriptions for Kaydence. He asked the name of our pharmacy and I told him and then gave him the number. He said, "You know the number by memory?" and then laughed. I told him that yes, unfortunately I do!

All in all our trip went well. We did nearly get into an accident when a car was trying to get into our lane. I ended up swerving sharply to miss her and veering to the side of the road in the grass. She pulled over, very upset as was I. I don't know how I even saw her coming into our lane but we were going nearly 70 mph so had she hit us I don't want to imagine what would have happened!

Needless to say I have much more on my mind than I can process so at the risk of ending up with a 12 page blog post I'll end this now!

Happy 3rd Birthday Emeric!!!

I thought I'd share some very random, non-chronological pictures of Emeric(most are from the last year because I didn't feel like hooking up my hard drive with older pictures of him on there!)

Happy 3rd Birthday Buddy!

We've had a great 3 years with Emeric. He's taught me more about life than I would've ever imagined and I thank God everyday for him!

Eating cake on his 2nd birthday!

Still cute with a scraped up, dirty face and messy hair!

Some stats:

At 3 years old you are 29.8 lbs and 37ish"

You LOVE Pediasure and your blanket(nani)

You love trucks and pestering your sisters!

You like to show off and make people laugh!

You say: mama, dadda, nani, wan tha(want that), ju(drink), ow, boom and no

Your least favorite things are: listening ;), eating, therapy(most of the time), and hugs.

Hair, conferences and strolling...

Kaydence wanted her hair cut "like daddy and Emeric's" but thankfully I convinced her to keep it a bit longer. :)

I went to a Beth Moore conference this last weekend which was great! Over 4,700 people!

Travis Cottrell was the praise and worship leader

A picture of Jill(my sister in law) and me(with a huge looking head)

Epilepsy Stroll 2009

Kylie and Johnna

Jill and Ben(They're the ones moving into our basement)

Gimme 5!

Kerry(my sister in law) and my friend Erika

Jill trying to win us the "Spirit Award"(we did end up winning! :))

It was SUPER hot so I don't think Kaydence was thrilled

Some of the people on our team

THANK YOU!

A huge thank you to those of you that donated to our Stroll for Epilepsy or walked with us last night! We had a great turn out and I am so appreciative to those who took time out of their day to walk for a cause that is hugely important to us! We had a lot of fun and I will get pictures up soon but for now I'm packing because we have our church family campout this weekend and tonight I'm going to see Beth Moore!! I'm so excited! It should be a great conference and great to get away with other women for a couple days!!

Cure Pity

A friend of mine posted this link on her caringbridge site and I wanted to share it too. It's http://www.curepity.org.

The basic premise of the website is this: "...to look beyond the challenges children with disabilities face, and instead realize the enormity of what they can accomplish through spirit, sheer willpower, and leading-edge medical care. I refuse to focus on the obstacles that children with disabilities may encounter; but rather on their determination to face—and overcome—them."

Maybe you know a child with special needs and if so this message is one to remember. I know from experiencing pity in regards to Emeric's situation that it's the least comforting of anything someone might want us to feel. We don't look at him as pitiful so we'd hate for someone else to either and yet I understand too that it's common to react this way because we don't know what else to say or do sometimes. So, for that reason I share this site. I like to get others thinking and I like to be challenged myself!

Did you know?

Since I've been in a blogging slump lately I decided to steal this from my friend Jessica's blog...

1. What Color Is Your Toothbrush? White with purple

2. Name One Person That Made You Smile Today: my kids

3. What Were You Doing At 8 Am This Morning? sitting with Emeric

4. What Were You Doing 45 Minutes Ago? talking on the phone

5. What Is Your Favorite Candy? maple nut goodies

6. Have You Ever Been To A Strip Club? never have. never will

7. What's the last thing you said out loud? "don't spill"

8. What Is The Best Ice Cream Flavor?I'm not a huge ice cream lover but I suppose something with pecans and caramel

9. What Was The Last Thing You Had To Drink? Coke

10. What Is The Longest You Have Gone Without Sleeping? 3 days

11. Have You Ever Made a Promise You'd Die to Keep? I don't think so

13. The Last Sporting Event You Watched? basketball

14. What Is Your Favorite Flavor Of Popcorn? caramel

15. Who Is The Last Person You Sent an email to? Nena

16. Ever go camping? yup

17. Do You Take Vitamins Daily? No, but I should

18. Do You Go To Church Every Sunday? yes

21. Do You Drink Your Soda With A Straw? if it's a cup with a lid, or at a restaurant yep. Otherwise nope.
22. What Did Your Last Text Message say?"Will you return the movies?"

24. Where Is Your Dad? in the woods

25. Look To Your Left, What Do you see? an old breastpump, guitar case, towel, papers, ok too much to list
26. What Color Is Your Watch? Don't wear a watch.

28. What did you do yesterday? went to Menards, babysat, worked on finishing my basement

29. Do You Go In At A Fast Food Place Or Just Hit The Drive Thru? Depends

30. What Is Your Favorite Number? I guess I'm not really partial to any specific number

31. Who's The Last Person You Talked To On The Phone? A doctor

2. Any Plans Today? nothing worth listing

34. Biggest Annoyance In Your Life Right Now? myself

35. Last Song Listened To? From the Inside Out because it's on my blog

36. Can You Say The Alphabet Backwards? Probably extremely slowly.

38. Favorite Pair of Shoes You Wear All The Time? flip flops, unless it's winter and then random pairs of shoes

39. Are You Jealous Of Anyone? yes

40. Is Anyone Jealous Of you? Not that I know of

41. Do You Love Anyone? yes

43. What Do You Usually Do During The Day? take care of the kids, do laundry, bring Emeric to therapy, clean, waste time on the computer, eat...

44. Do You Hate Anyone That You Know Right Now? no

45. Do You Use The Word 'hello' daily? mostly when answering the phone

46. Meaning of life? Loving

47. Do You Like Cats? NO.

48. Have You Ever Been To Six Flags? nope.

49. How Did You Get Your Worst Scar? I don't have any major scars but I do have 4 on my ankles from playing hockey two years ago and my skates were rubbing on my ankles.

50. Last big talk? today.
51. Last Cd Played? Sara Groves
52. Last Bubble Bath? last week
54. Last Meal? Subway... Pizza and mt. dew
55. Have You Ever Dated Someone Twice? yes
57. Have You Ever Fallen In Love? yes
58. Have You Ever Lost Someone? yes
59. Have You Ever Slept Until 1pm?I don't think so
60. Have You Met A Famous Person? I've met Charlie Pride. LOL
61. List Four People You Can Tell Pretty Much Anything To? Anna & Karri... Can't really think of 2 more

62. List Three Favorite Colors/shades: Pink, Purple, Blue

63. Laughed Until You Cried? yep.

64. Went Behind Your Parents Back? yes

65. Who Posted This Before You? Jessica

66. Opinion on Abortion? I probably have a stronger opinion on this issue than any other... I very much disagree with it.

67. Lowering The Drinking Age? nope.

69. Who Are The Best Huggers That You Know? I don't really like hugs all that much but I guess the best huggers would be those that give side hugs and do it genuinely and not out of awkward, not know what else to do, kind of thing...

70. Do You Believe In Love At First Sight? no

71. Is There Something You Want To Tell Someone? yes

72. Something that makes you go "hmmmm?" I agree, Jess, fake people. And lots of other things.

73. Would You Kiss Someone you just met? Only if it were Patrick Dempsey ;)

74. How Many Kids Do You Want To Have? 3

75. Do You Want To Change Your Name? no

76. Last Time You Saw Your Father? 5 years ago

77. What Time Did You Wake Up Today? 7:00am

78. How Old Are You?28
79. What Were You Doing At Midnight Last Night? sitting with Kaydence on the chair holding a heating pad around her legs because they hurt

80. What Is Your Favorite Thing In Your Room? the carpet. Since I rarely see it my heart has grown fonder of it.

81. Where is your bffae? I don't know what this acronym is... I'm assuming it's Best friend forever and then something else??? Anyway I don't really have a "best" friend.

82. What can you not live without besides food and water? My family. Oh, and the internet. And pizza. And Coke, in a can.