Health updates

Olaf's mouth and throat have responded well to the steroids, but the steroids have bad side effects too. He should be starting Imuran today which is good. In a few months, when the Imuran kicks in, they will be able to lower the Prednisone. It's a balancing act.

Simon had to have his blood drawn today. They are looking for Epstein Barr. He had a fever for five days and now his tonsils are coated in a white plaque. The strep culture was negative.  Oh happy day!

Olaf is home

Olaf is home and Simon has a fever. When it rains, it pours. I am tired both physically and emotionally. I wish I could quit. The end.

Olaf update

Olaf could be home tomorrow if he can swallow the medicine that the doctor wants him to come home with. If not tomorrow, then definitely on Thursday. He is beginning to heal even though he still has a lot of pain. He is on Dilaudid for pain right now and it does wonders for him. However, I don't think they will let him come home on that medicine. Vicodin, yes. Dilaudid, no. I am not sure if he is ready to give up his Dilaudid, so he may stay till Thursday anyway.

I have so many people to thank. I don't think many of them read this blog, but I want to thank them anyway.

Ray - You were the first person I thought of when I needed someone to stay with Olaf on Friday night. I knew you would do it without any reservations. Thank you so much.

Cheri - Thanks for watching the children Friday night.

Stephanie - Thanks for bringing lunch for the children on Friday and taking Grace and Josiah to your house.

Patty - Thanks for watching the children on Saturday.

Chief - Thank you for my Chili Dogs from the Varsity. You rock!

Tammy - Thanks for dinner on Saturday for the kids.

John Morris - Thank you for dinner for the children on Sunday.

Delta Family - Thank you for the phone calls and well wishes and hospital visits. It was very nice to have so many people care about my husband.

Olaf is in the hospital

Just a quick note to let you all know that Olaf is in Crawford Long Hospital. If he responds to treatment we are looking at a 3 to 5 day hospital stay. He cannot swallow at all at this point and is in a lot of pain. Please do not call the hospital room. I will update here as we know more. He will be starting major doses of IV steroids at 4:00 pm. I will be leaving here around 7:00 pm to go home for the evening and will be back tomorrow morning. A good friend of Olaf's from work will be staying through the night with him. Thank God for good friends!! THANK YOU RAY!! I am trying to juggle people to check in on the children, so if you are willing to do that, please let me know before you drop by the house. You can call my cell phone and leave a message if I do not answer. Thanks so much.

Pemphigus Vulgaris and Las Vegas

There is intercellular staining on monkey esophagus at a titer of 1:640. There is no staining with IgG on salt split skin. The Elisa for the anti-desmoglein-3 is positive. The Elisa for for anti-desmoglein-1 is negative. These findings are consistent with the diagnosis of pemphigus vulgaris.

Olaf's diagnosis was confirmed today as Pemphigus Vulgaris. He is now on 80 mg of Prednisone to try to get his symptoms under control. Prednisone can be an awful medicine with bad side effects, but the goal is to get his scalp and mouth healed. Then he will hopefully go down in dosage and be put on Imuran or a drug similar to that. His scalp looks awful right now and he is losing his hair where the sores are. We are hoping that this treatment plan begins to give him some relief from the debilitating pain he is constantly in.

On a much brighter note, Olaf and I spent three glorious nights alone in Las Vegas, Nevada. We had a blast walking the strip, eating at the Stratosphere and looking at the fountains at the Bellagio. Las Vegas has changed so much in 20 years and we truly enjoyed our time away from the children. We need to do it more often. Here is a picture of us in the Top of the World Restaurant in the Stratosphere.



This trip solidified the fact that I don't want anymore children. It was way too much fun and I am too old and selfish to have anymore. I have decided we will do one family trip and one couple trip a year. The end.

Some clarification

There were a few comments from the last post that made me want to clarify some things about Olaf's diagnosis.

Pemphigus is an autoimmune disorder of the skin, therefore the diagnosis is usually made by a dermatologist. The rheumatologist didn't even test for pemphigus because that is not his specialty and it is *that* rare. All Olaf's tests that the rheumatologist did came back negative, so he is 100% confident that the only thing Olaf is dealing with is pemphigus. The rheumatologist is NOT the doctor that will be Olaf's primary care physician during his treatment. It is out of his area of expertise. In this particular autoimmune disorder, the primary care physician is almost exclusively a dermatologist. We still do not have the results from the second scalp biopsy, therefore Olaf has not started treatment. We will hopefully know something by next Tuesday as we are leaving on Wednesday for our first ever trip away from the children. I will update as I know more.

We have a tentative diagnosis

Thanks to the dermatologist of all doctors. Olaf's scalp biopsy came back positive for pemphigus. It is a very rare autoimmune disorder. As a matter of fact, the dermatologist said he has only seen one other case at his practice approximately ten years ago. So today they took another scalp biopsy and drew blood to send out for further evaluation to determine the severity of the pemphigus. When that comes back, then he will start treatment which will include high doses of prednisone as well as other medicines. I am thankful for a diagnosis and hopeful that treatment will help him.

Olaf Update

All of the test results thus far have been negative. We are still waiting for a few more results to come in, but for now Olaf moves on to the rheumatologist.

Caleb had an EEG this morning for his seizure disorder. We should get those results in a few days. He hasn't had a seizure for several years, but he has been on his medicine as well. He gained 17 pounds since his last visit about 8 months ago but only grew an inch. That's my boy! He is 5'7" now. Camille is probably 5'6" now. I think she will hit 5'9" before she stops growing. Josiah is taller in inches than his weight in pounds. He weighs 48 pounds and well over 48 inches. I am not sure of his exact height, but I am sure he is 54 inches or taller.

I am typing one handed, so I am going to sign off.

We know this much...

the sores themselves are not cancer, but we figured that much since they heal with meds. We won't know the results from the other cultures until Monday or later.

My house is a mess because I am lazy. Anyone want to clean for me?

Biopsy on Monday

Olaf has his biopsy on Monday. I'll keep you posted.

Video of Olaf's Mouth

Vlog

Thanks Heather!

Look at my coolio blog. Thanks Heather for telling me about that website. If you use Blogger, look at the little link up in the left corner and you too can have cool backgrounds.

Olaf's mouth is such a mess again. He called the doctor and asked to be put back on the medicines. I have no idea what is going on with that man. I sure hope we can get a diagnosis. He cannot live on antibiotics and antivirals forever. I want to take a photo of his mouth to post just so you guys can have an inkling of how bad it is. His tongue is nothing but a huge white patch that bleeds when the white gets rubbed off by eating or swallowing. All of the soft tissue in his mouth is white puss pockets and his entire esophagus is covered in the same stuff. He can't talk, he can't eat, he feels like crap... And I cannot do anything to help him. Pray for him. He needs it.

Simon caught the cough that the girls had, but when Simon get something respiratory it is always bad. His chest rattles with every breath. The next two weeks are not going to be fun.

Oh, Zoe asked where my last vlog was. I took it down before I reformatted the blog to see if that was the reason my sidebar was all wonky. I just never put it back up. I still have your pen pot. I will get that in the mail next week if it kills me.

In order to get my comments back...

I had to reset my blog. I absolutely hate the awful pink color background, but until I figure out how to change it, you're stuck looking at it. The good news is I now have comments. The picture on top is Olaf and I on our wedding day, January 23, 1988. Gosh I was cute! Where does all this self esteem come from I wonder? Hmmmm.... I think it comes from Cheri.

Bragging a little; OK, a lot!

I absolutely have the best husband in the world.  While on our lunch/breakfast date at Cracker Barrel, my husband looks at me from across the table and says, "I don't know how it is possible to love someone more each day, but I love you so much." Then he started to tear up.  He took a deep breath and composed himself so I wouldn't cry too.  After lunch we did a little shopping.  We went to Rack Room Shoes because he needed some new shoes for work.  While we are there, I start looking at dressy sandals and pumps.  After he found his shoes, he comes over to me and is genuinely interested in my shoe purchases.  He is pointing out shoes and giving me his opinion.  It was fabulous.  I don't even care if he was faking it!  It was still fabulous.  We walked next door to TJ Max and I bought two more pair of shoes.  (And I am not even a shoe gal!)  Then to top it off, today he asks me if he can give me a pedicure.  He asked me.  He said, "You really need a pedicure. (He noticed my awful feet from trying on the shoes.) Do you want me to give you one?"  So off we go to the bathroom where he scrubs my feet with Basin Sugar Scrub, rubs lotion all over them, files my toenails, then paints them red.  What is even better is he said, "This is hot!" as he was painting them.  I think I'll keep him.

Olaf Update

Olaf finished his medicine for his mouth a few days ago, and now his mouth sores are coming back.  He was on a strong antiviral, a very strong antibiotic, and a steroid for 14 days!  He goes back to the doctor on Monday, however his mouth and throat will be covered by that time.  My guess is that the doctor will want to biopsy the sores and perhaps do more invasive tests to look for leukemia and other cancers such as a bone marrow biopsy.  I'll keep you posted.

Tomorrow is our 21st wedding anniversary.  Camille is going to watch the children for a few hours so we can go out to lunch or perhaps go see a movie.  I want to see Slumdog Millionaire since I have heard so many great things about it.  I hope Simon doesn't poop.  She doesn't like to change poopy diapers:)  The temperature is supposed to be 63 degrees tomorrow which reminds me of the day we got married in Hesperia, CA.  I think it was in the low 70's that day.  It was a sunny, gorgeous day and I remember being nervous as I walked down the dormitory stairs with my 2 girlfriends.  I remember thinking (or maybe even saying out loud) I am about to get married!  That is crazy!  To be honest, I never expected to be married for life.  Neither did Olaf.  We were kids and we thought since we were dating, we might as well get married and get some extra money from the government.  The military pays you extra to live off base and you get a supplement for food as well.  So, hey...  Why not get married?  Who knew that twenty one years later we would actually love each other more than the day we got married?  Not me.  

Something I read...

Rosa sat so Martin could walk,

Martin walked so Obama could run,

Obama ran so our children can fly.

Only three days!!

Until LOST returns!  I can't wait to see what happens.  

Five days until my 21st wedding anniversary.  January 23, 1988 I married a 19 year old kid and now I have a 40 year old hottie.  Why do men look better as they age?  It really isn't fair.  I just look old and fat.  

I am listening to Luther right now, holding sleeping Simon, and typing one handed. Talented, eh?  We went to Costco today and spent a wad of money.  I love Costco though.  

My friend, Raylene, gave me a new drink recipe.  It's called a Cloud and it's made with 2 shots Grey Goose Vodka, 1 shot Creme de Cocoa, 1 shot Godiva White Chocolate Liqueur, splash of cream.  Shake with ice, strain and drink.  Yummy.

Olaf is off tomorrow for MLK Day.  I plan on talking with Camille about Civil Rights and what Dr. King accomplished.  If it weren't for him, Mr. Obama would not be taking the oath of office in 2 days.  No matter your political affiliation, our country is making history on Tuesday.  

Oh, Dance With My Father is playing now.  You must listen.

My Vlog with Cheri

Can be seen here.  It was too long to upload to YouTube:)  This one is only 10 minutes and we have FIFTY minutes total, so there will be more people.  Oh yes, much more.

Olaf saw the doctor yesterday and all his blood work came back good.  That was great news!  So now he is on some serious antibiotics, steroids, and an antiviral with the hopes that it will finally cure him of these mouth sores.  If this round of medications do not work, then they will put him under and biopsy the sores themselves.  Thank you to everyone who has asked about him.  I appreciate it so much:)

Chewing...

"I have three things I'd like to say today.  First, while you were sleeping last night, 30,000 kids died of starvation or diseases related to malnutrition.  Second, most of you don't give a shit.  What's worse is that you're more upset with the fact that I said shit than the fact that 30,000 kids died last night." - Tony Campolo

"Water is fluid, soft, and yielding.  But water will wear away rock, which is rigid and cannot yield.  As a rule, whatever is fluid, soft, and yielding will overcome whatever is rigid and hard.  This is another paradox: what is soft is strong." - Lao-Tzu

"Man is a religious animal.  He is the only Religious Animal.  He is the only animal that has the True Religion - several of them.  He is the only animal that loves his neighbor as himself and cuts his throat if his theology isn't straight." - Mark Twain

"Gandhi sought to follow Jesus without being a Christian, whereas we try to be Christians without following Jesus." - Brian McLaren