Abby-Normal : August 4, 2009

(1st Pic is of Aaron taking a morning nap on the beach.)

I guess this is it. I’m 45 today. Should be monumental, shouldn’t it? I gotta tell ya, it feels really weird, but not monumental. I look in the mirror and hope that the ageing skin is covered by the authentic smile creases around my eyes. My scowl lines need Botox, but then how would I ever get the kids to snap too in public without saying a word? It is what it is.

I’ve started to write several blogs since May, and always stopped. I wanted to have some kind of wonderful, exciting, or good news to share that would say “Hey, it’s worth remembering us in prayer. God’s listening. He really is.” I don’t have that kind of news to share, but I do have news. I realized today that my kind of news is actually bigger than an “oh wow!” kind of news. “We are persevering.” That’s it. That’s my news. The thing about it is, some of the trials we are going through we have no control over, and some of them we actually have a hand in creating.

For example, I am extremely irritated at my physical limitations. Even though I’m stronger and able to do things that I was never expected to be able to do again. So I get totally stoked up and all Miss Happy Pants doing my chores around here, and then I fall off the vanity sink in the bathroom and break 3 ribs and give myself a lung contusion. That was 5 weeks ago. Mad? You’ve never seen the likes of this kind of mad. I wanted to scream to the whole world that I was the biggest idiot on earth. I fell because I wasn’t paying attention to my footing. How careless. Never fear, I got my chance last weekend to prove I really am that big of an idiot. At a healing stage of 4 weeks, Mike and I took the kids camping on the beach. We were being extremely careful with me during our hike up and over bulkheads. SOMEHOW, I fell from the rope and re-fractured all 3 ribs. At that point, it was completely appropriate for every person we came in contact with to share their opinion about our poor judgment or if we even use our brains.

(Pic 2: Noah & Aaron on the ropes going up and over the bulkhead.)

(Pic whatever # it is: Noah got glasses!)

In some ways I do think I’ve begun to use my brain a bit less. I go into the hospital for my treatment once a week to keep the markers on my blood cells happy and my airway open. It takes about 4 hours every time I’m at the hospital, and it is boring. I always give myself a treat on the way home from the hospital though….Starbucks. I go into the same store and order my usual “venti, unsweetened, black, shaken, no water, iced tea”. Ticks me off that I like it actually, coz it’s just plain wrong what they charge for these yuppie drinks. Anyway, the tea compote sits out at room temperature, and if you don’t shake it, like it is ADVERTIZED, it is warm and not so special. The chick-a-bee working the stand didn’t shake it. So, I politely asked her to shake it. She told me “It’s just tea, ice and water. No.” Still calm, but in a higher pitch, I asked her to please fix it as it is advertized. She told me “No.”, and curled her lip up at me! Hello?! I’m paying $2.10 plus a tip here for this Barista to be mean to me AND I just came from the chemo ward. I believe my eyes swirled in opposite directions at this point because I told her “That’s fine. I will shake it myself.” So, I picked it up and shook tea all over Starbucks. So there’s the proof. I’ve officially lost the use of my complete brain.


Enough with the stories, here are the highlights:
• Noah is on the right medication and his weight is up to 91 pounds. We are thrilled about that.
• Aaron is the same, but Mike and I are trying to adapt. That is new. We are seeking help to raise a special needs child. I can’t express to you how difficult it was for us to accept that Aaron really is a special needs child.
• Great news…Aaron only broke out one more permanent tooth so far this summer! Noah one upped him by breaking out two baby teeth that were dangling from his braces. Cute mental picture, eh?
• The lawsuit is moving at a snails pace. The defendants and their own inspectors will be here in our home on Aug. 21st to do their own search. We really don’t know what to expect, but our lawyer will be here as well as all of our inspectors. Sounds like I should plan a little luncheon so we can all get to know each other. Should be fun, fun, fun!
• Mike changes jobs in September. He will return to the Bremerton Navy Hospital until retirement of September 2011. Unfortunately, it looks like he will be deploying to Afghanistan a few months after he goes back to the hospital. Whatever…there’s always something new going on here!

Dogs are Peop..er..I mean..People are Dogs Too:

Two nights ago Mike had had it with the shedding. We were sitting on the couch and he asked if I would go outside with Sydney, our yellow lab. She sheds like crazy in the spring, but she wasn't inside...I was. The medication caught up with me and I am losing my hair. I went this week and had several inches taken off so this is a pic of my new shorter do. Even still, I am losing it by the handfuls. The pic next to it shows what is on my pillow in the mornings. I don't know if I will have any left or if I will lose all of it. This is actually very hard to deal with. I know it is only hair...I know...but it is hard. Mike lost his hair to chemo 11 years ago this month. When it came back in, it was very thin, lacking color and a strange texture. He literally could care less, as could I, but for moi? It's a different story. I'm a tomboy when it comes to being outside, but, wow, am I ever a girly girl when it comes to hair and makeup. Right now I'm experimenting with new hair products that are supposed to give me "big sexy hair". Yeah...that's just how I'm feeling... :-|...oh baby.

All good news on my bone marrow though. Without cutting my throat muscles or removing a section of my vocal cord, my airway has remained open even through a few reactions. We wanted to postpone the surgeries until after the new treatment because the surgeries will make it very easy for me to aspirate the rest of my life. Our goal is to avoid surgery.

As for the boys...well, I'd be LYING if I said things were good, so I won't. Things are, as always, full of challenge. The Reader's Digest version is this: Aaron's stint in public school didn't workout. After 4 weeks, the school decided that he needed to be moved from the resource room to the life skills room. In the meantime, Aaron had lost most of his reading and writing skills he had begun school with. It was so frustrating because his I.Q. is in tact, but they said they didn't have the manpower to work with him. So, once again, we pulled Aaron and actually placed him at Burley Christian where Noah attends. We hired a private teacher to work with him all day, yet help Aaron participate in the classroom too. She has actually turned out to be a true Godsend. Unfortunately, Mike needs to moonlight more! And, of course, Aaron is still Aaron...sweet, lovable, seizure maniac, accident prone, little Aaron...last week I had to get him from school, take him to the E.R. for a fracture in the ankle and on the way to the hospital I got a flat tire. Ahhhhh, yes...life in the Schlegel household...never boring. He used the crutches for exactly a day and then chucked 'em. He said his armpits hurt too bad! Okay, but what about the ankle?

Noah is still struggling to maintain weight. He is 5'4" now and at 79 lbs. Last week the doc said if he loses any more weight he is going in the hospital. We don't have a definitive diagnosis on him, but with the biopsy, it still looks like crones or colitis. He is, without question, the heaviest concern on our hearts right now. Unfortunately on Sunday morning he woke with a fever of 102 and has been hugging the porcelain queen all week. To stop his over reactive system, the doctor has him on several extra medications. Because his fever broke, we MADE him attend school this morning and that didn't go so well. His system didn't cooperate and the school doesn't understand that just because the kid is barfing; (and I knew he might still be) that he doesn't have something contagious. Ohhhh, they weren't too happy with me. :-}

So, thanks for checking up on us. Most importantly, thanks for the prayers. Obviously a miracle is occurring since there really was no hope for me to recover and look at me now. I am a bonifide, functioning person again!!!

Wildlife Abounds - April 13, 2009

I thought I would share some pix of the critters around here. Doves, dogs, rabbits, deer, fish, hummingbirds, metal bulls...You know, the normal stuff. It is definitely spring, because they are all happily breeding! Well, not the bull.

April Fools Day

Woke up this morning to the snow coming down, and I had to laugh. Of course it is snowing! Only God could orchestrate such a stellar joke. The boys have decided to slather the door handles in Vaseline for Mike's benefit. Sweet children...where is their mother at anyway...oh yeah...encouraging the antics. I'm busted.

My hummingbirds are still searching out nectar and the primrose aren't frozen so I guess spring will arrive SOMETIME.

Onto the health front instead of the weather front, I am scheduled to have my first throat work done on April 6th. However, we got some exciting news yesterday from my other allergist. There is a therapy called XOLAIR Therapy that is given and binds with the IgE allergens in my blood. There is some promise that this may work. I don't want to get to techy on you, but this would actually help heal me. Talk about doing a happy dance! I was beside myself having a party after talking to her on the phone. So, we do have two camps: one of my allergists says that I need to stay on the medication to slow the overproduction of my bad bonemarrow cells for 2 years and that there is nothing more she can do. The other has introduced the XOLAIR Therapy and thinks I may actually have a body that could experience healing....I'll go with her!

That's the latest scoop, and here are the latest pics of snow...taken a few hours ago...because "where there is snow, aspergillus won't grow."

The Deed is Done - March 19, 2009

We are home! Everything went extremely well this morning. The initial scope in my throat was to be done without provocation of aspergillus. The 2nd scope in my throat was to be done with provocation of aspergillus to see exactly what muscles and/or vocal cords were involved in closing off my airway. Since nothing seems to go as planned, it didn't! The doctor was able to see what was engaging in my throat through a series of tests without provocation. He felt the risk would not add enough information to change our course of action. So the great news is that I didn't have to stop breathing! The next step is to address the vocal cord/muscles in my throat. The goal from this is simple: Since we can't avoid anaphylaxis, we are hoping to keep a small airway open.

Another bit of confirmed good news is that my body is healing. Yes, it is actually healing. My bone marrow has quit overproducing, and I am very stable. It's gooooooooood. Mega answered prayer!

D-Day in the Morning - March 18, 2009

In a few short hours Mike and I will head over to Seattle for my little throat procedure. Actually, I'm remarkably calm considering that they are going to inject aspergillus in my body and cause my airway to close. I'm either in denial or being prayed for. Thanks...I know you are praying for me. :-) Will you specifically pray that this procedure will work in helping to diagnose what to do in my throat to keep my airway open? Also, please pray that my body will respond quickly and fully to the epinephrine when they attempt to stop the anaphylaxis. Finally, please pray for peace. It is really anxiety provoking when your airway closes off. The sensation of trying to draw a breath and being unable to move air is pretty bad. So, I would kind of like to have an out of body experience and not "really" be there! Unfortunately I don't have a choice. Pray for me to keep my focus on God and what He can do instead of what is happening in my throat. We will update the blog when we return home. Love to all!

I'd love to go on vacation again someday! Since I can't fly for awhile, how about the Schlegels and Rogers come here this summer? It'd be interesting...I promise!