Long time...

First things first! On May 4th Simon turned two, and today is Grace's 8th birthday! My children are growing up. As a matter of fact, Camille wore make up today. Uh huh (nodding my head). A little mascara on the top lashes (which I had to put on for her) and some pretty blue eye liner. Ah, life is passing by so quickly.

Olaf was in the hospital 2 weeks ago for a staph infection. It was just for 24 hours to get IV antibiotics in him. The staph is still in his elbow and he is still on oral antibiotics. He feels like crap due to the steroids, but he is at work like usual. His heart beats really hard and he has tachycardia as well. Hopefully he will be off the steroids in the next three months. He is now on Imuran, so as that starts to take effect, his prednisone can begin to be lowered. His scalp still has lesions on it, but it looks so much better than it did in March. His mouth and throat are good right now.

One reason I rarely post here is because I am on Facebook so often and post any pertinent information there. If you are on Facebook, look me up. Oh, and Grace has a blog now so go leave her a comment and tell her Happy Birthday!

Happy Easter

Today was a good day. Simon had fun on his first Easter Egg hunt in our front yard. It was precious.



Caleb, Camille, and Simon have a cold. First mono, now a cold. Oh Happy Day!!

Vlog

Tired...

I am tired and it is late. Simon is wearing me out. He only wants me. Not only that, he has learned how to talk and scream and throw a fit. I swore I would be a better parent and never, ever (God forbid!) allow my child to throw a fit or disobey me. HA! And I'll say it again for good measure. HA! I am too old to fight this little guy. The last one really is the most spoiled. Without a doubt. He has a recheck at the doctor on Wednesday so she can look in his throat to make sure he is getting better. I know he is because he started eating again. I may cancel it...

Caleb is on spring break this week. We are going to see this on Thursday afternoon. We also have plans to go see this in the future. I guess we will be learning about China's First Emperor this week in homeschool. I think there may be a Louvre exhibit at the High as well.

Have I mentioned that I am fat? Well, I am. I don't think it is going to change by me writing about it though. Apathetic at this point.

OK, time for bed. It is midnight and I need to sleep. I wish I didn't need to sleep and then maybe I would clean my house. But sleeping sounds like a better idea.

It is confirmed

Simon has mono. Where in the world did he get that? Now I am sure all the children will get it since we all share drinks and food. Oh well. At least I will know what it is once it hits. He is on steroids to help with the inflamed tonsils.

Olaf has a follow up appointment with his doctor that admitted him to the hospital today. I will post any new information tomorrow. I don't think we are going to learn anything new.

Josiah is behind in Kindergarten. I hope when he starts his DVD's next year that he can keep up. I have not done a great job of schooling him this year. He can read, but is behind on knowing his special sounds and is also behind in his writing ability. He does great in math though. He is pretty good on his DS and Wii. Does that count? I don't think the girls will get to finish their entire DVD series as well. We'll be mostly finished. He's not dead! He's just mostly dead!(Princess Bride)

Do you know that no one in my extended family reads this blog? I have a mother, a sister, and three brothers, and not one of them reads my blog. Is that sad or what? Can you imagine having family members, especially your own mother, who knows about this blog, knows there are videos of the children here, knows there are photos here, and doesn't even bother to come? Not only that, I haven't seen them in nine years. My mother has never seen Grace, Josiah, or Simon. She will not come visit even though she lives alone and I have offered to pay her way out here. Do you know how that makes me feel? Worthless. Same with my sister. She is off all summer long because she works for the school system. I offered to buy her a plane ticket out here, but she hasn't come either. I know bitching won't help things, but it just makes me sad. If you have extended family, be grateful. Very grateful. We have none! Olaf has one brother and we don't see him either. I cannot imagine having family who offers to care for the children or who you can call on in time of need. Lord knows I have needed some help the past few weeks. OK, I am done now.

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.