I'm such a big chicken...or is it turkey?

I'm a scaredy cat. It doesn't take much to have me hiding under the covers in fear of some unseen boogey man. (Don't ask me why people like me pull the covers over our heads when we are frightened. That not only makes us chicken, but it makes us stupid as well. There is no way a thin little sheet is going to save us from any monster...unless it's a killer drier sheet).

Anyway.

I've been a little extra jumpy since we returned from Seattle. I have a good reason too. There was a haunted elevator that kept trying to kidnap me. No really there was. Every time I got on that particular elevator and pushed the first floor it would take me to the basement, but the door wouldn't open. Then it would take me up to the fourth floor (or some other floor...it varied) and the door wouldn't open. It was very creepy and more than once I ended up pressed against the door saying, 'let me out!'

Like I said, I'm a scaredy cat.

But it really is true! That elevator had it in for me. Mom and Lauren sat there and watched it stop on the first floor once and then not open. They were waiting on me and they couldn't figure out why the door wasn't opening. What they didn't know was that I was on the other side once again saying, 'let me out!' Of course Lauren didn't help matters by telling me it was probably haunted by an ancient Swedish Nun and mom didn't help by waiting until it was quiet on the elevator and then jumping around, cupping her face with her hands and yelling, 'boogida-boogida-boogida'. After that I really hated that elevator.

So you can see why I was a little jumpy when I got home from the trip what with all the haunted elevators and scary ancient nun stories. I mean who was to say the nun didn't follow me home? She could have jumped into my suitcase. She may be running (or floating) amuck in my house looking for an elevator to lock me in. Only HA! The jokes on her. I don't have an elevator.

Anyway, this current jumpiness led to me screaming in horror and almost wetting my pants early this morning in my own home. I was up early and doing some housework when I ran across one of Dave's windbreakers that needed to be hung up. I grabbed it and went into the front hall to place it in the coat closet. I didn't turn on the light because the girls were still asleep. Instead I reached into that dark and shadowy closet, praying there weren't spiders or nuns and groped around for a hanger.


Only instead of a hanger my hand wrapped around something really weird feeling. I peered into the darkness and saw a beedy eye staring at me from a severed head. Like any rational adult would do I screamed at the top of my lungs, ran like fool and jumped under my covers. After a little while when no severed head came after me with killer drier sheets I worked up the nerve to go back and get a closer look at whatever was staring at me in the dark closet. I turned on the light and saw this:




It's a turkey decoy my husband uses for hunting. I'm thinking of sicking the nun on him. This is all his fault.

Loving this Loving Award

Not too long ago I received this lovely award not once, but twice!







Isn't it adorable?? I KNOW! I totally think so too. First I received the award from Angie over at John Deere Mom and I was SO excited...just tickled pick I tell you. Then a few days later I received it again from Sarah over at Reading Teachers Rock. Then I was even more tickled...so much so that I had cute little brown spots on my tickled pink self (I just LOVE brown and and pink together). And yes, that really is the name of her bog. I didn't even pay her to say that. Why would I have to? Reading teachers DO rock, and of course we are also extremely humble.



So now I am supposed to pick a few blogs that I love to pass the award along to. I must admit I am woefully behind on reading blogs (and writing on my own), but I still know which blogs I love. So here's my list and it is filled with wonderful, loving women that I am very blessed to know.



Lama Mama

Mom Mom's Rant

For the Love of Home

Mindless Junque

The Jackson Journey

Tara

Tammie

WeevilMaw


If you ladies want to play along all you have to do is post this award on your blog and pick some of your favorite blogs to brag about. Not that I know a thing about bragging...I'm just a humble little reading teacher that ROCKS.

There's No Place Like Home

We are home! Yippee Skippee!!!

And home it is. This little town has never felt more like home than it does at this moment. I am so awed and overwhelmed by the outpouring of love and support we've received by friends, co-workers and our church family. Everyone has been so amazing.

And we needed it...not the money so much (although there is NO way we could have made the trip to Seattle and back without the love offerings we received), but more the reminder that God loves us. Oh we never really forgot that He loves us, but I for one was letting myself feel a little 'forgotten' by God. I feel ashamed admitting that after the incredible way the Thompson family have kept their faith through their recent trials, but I am just being honest. I used to have a full well of faith. I kept my faith while Shanna suffered all through our childhood and on into adulthood. I kept my faith through five miscarriages. I kept my faith through both girls being very ill at birth and spending time in NICU. I kept my faith through Lauren's open heart surgery and later through the finding of her brain tumor...

But when Shanna died, well I guess I started losing a little bit of my faith. I wasn't really angry with God. I was more hurt. Yes, that's the word. Hurt. My parents have always served God selflessly and raised us in Church. We always believed God could preform a miracle in Shanna's life and keep her here with us, allowing her to be a great witness of His awesome power.

Only He didn't heal her. She suffered her entire life and then died, leaving us (and her wonderful son Tre') to deal with her loss. I found myself starting to ask God why. Why didn't He heal her? Why did He let her suffer so long if He wasn't going to ultimately heal her? Why? Why? Why? When Lauren starting having these horrifying problems lately (problems that I haven't really covered on the blog out of respect for her wishes), I really started feeling abandoned. I wanted to have faith that God could heal Lauren, but I'd watched my sister suffer and then die...my well of faith was running close to empty.

Then the trip for Seattle came up and the people of Munday reminded me exactly how much God loves us. I felt His love through them and their many kindnesses. God does love us and He is in total control of this situation with Lauren. Through their love my well has been refilled. I will forever be grateful for that.

I know you are wondering how Lauren is doing and I'd have to say that overall she is doing very well. During her last test they gave her an injection of Corticotropin-releasing hormone (crh) to stimulate her pituitary tumor (or whatever is causing the ACTH/Cortisol to be so high) and then drew blood every fifteen minutes to see how she reacted. As soon as they gave her the injection she felt like a horse had kicked her in the chest. She felt like she couldn't breathe at all. That passed though and she seemed fine. Then she started turning bright red and got sick to her stomach. The trip home was no picnic for her (although she didn't complain much at all) but she got to know the bathrooms at the airport very well and still feels sick today (three days later). She is still a little red and this afternoon she started having a lot of trouble with her seizures. I have no idea if that is from the CRH or just a coincidence.

We won't know the official results from the test for two weeks when Dr. L calls. I've seen about half of the test results (I had them printed off in medical records again before we left) and so far she has seven test results that are indicative of Cushing's Disease (high cortisol and high ACTH). I can't wait to see the rest of the results and hear what Dr. L suggests we do next. He sent home several tests to do at home and while we wait we will start on those.

Thanks again for all the prayers and support!

Thursday

Wow, what a night! I have no clue what is wrong with her, but Lauren had an awful night. This was the first night we didn't have to get up and go to the infusion center for tests so I was hoping for a good night of rest for Lauren. Instead what she had was a night full of pain, crying and quite a bit of panic on her part. For some reason she had this weird pain/burning all through her chest. She had a lot of trouble describing it to me as it was not something she'd experienced before. I never did figure out what was wrong. She tried laying on both sides, sitting up, standing up...well, we tried everything. I still don't really have a good grasp on what the pain felt like because she couldn't describe it and was too upset to really try. Ugh. It was NOT fun.

She finally fell asleep around four this morning and has slept well (I have been up watching her like a hawk). My guess is that the dexamethosone that they have her on for tomorrow's stim test is causing this pain. If that is the case it is going to be a very long day and night. She has to continue taking the dex all day today and through the night. Gosh, if made her that sick after the first two doses I am afraid of what seven will do.

Anyway, back to the actual update. We did meet with Dr. Ludlam last night. We didn't leave his office until after six. I can't say he was the friendliest or most encouraging man in the world, but he seems to really know his stuff and that is all that matters. He said we are assuming this is Cushing's Disease and will continue testing until we prove it (which is the only way to get clearance for surgery). He didn't have any of her test results back yet from this week and said he'd call in two weeks after everything was in so he would have the 'big picture' before he talked to us. We were given a kit of home testing stuff (poor Dr. Finley is going to be a busy man) and he told us to expect to be testing a lot because that's how things went with diagnosing cyclic Cushings. The trick is to figure out your cycle. We will be charting every symptom she has while we test. Then we get her 'highs' back, we go back and look at her symptoms. From that point on we try just testing when she has the same symptoms again. This will ensure more 'highs' and makes things easier with the insurance company.

Okay, now for the rest of my news. Remember when I said Dr. Ludlam didn't have any results back from the lab yet? Well I do! I went down to medical records and asked the nice man that works there to pull up anything the lab had entered into the computer and he printed what they've finished so far off for me. Yay! (Shhhh. Don't tell Dr. Ludlam. I don't want to make him angry. I just want to know what's wrong with my baby and two weeks is a looonnnnggg time to a worried mom). Really the only thing back from the round the clock draws is the Cortisol levels...well, some of them. Here is where I will get a tad technical and do a terrible job of explaining things:

Cortisol is high during the day and non-existent at night for most people. It should be <1 at the 12:30 a.m. and midnight draws. Dr. Ludlam considers anything over 1 to be high and anything over 5 to be highly suggestive of Cushings. Lauren had FOUR that were over five in just two nights of late night draws. Her really low numbers showed up during the daytime. This is also suggestive of Cushings because people with this disease have diurnal rhythms that are out of whack (out of whack is a medical term...let me know if you need translation).

Also her prolactin level was very high. This is the hormone that tells your boobs that it is time to become milk factories when you have a baby. This should not be high for Lauren. She isn't expecting a baby and plans to be a vet, not a factory worker. The cause of high prolactin is almost always a pituitary tumor. (Lauren doesn't have milk production yet, but she complains of extremely itchy boobs ALL the time).

Everything I wrote above was just my motherly take on things. I am not a doctor and I have no idea how Dr. Ludlam will interpret those results. Also if you are reading this because of a google search on Cushings or something...seriously, I am NOT an expert or a doctor, just a worried mom that's done a lot of research. So please remember that only your doctor can explain this stuff to you properly.

End disclaimer.

Anywho- today is Lauren's MRI and CT scan. I am hoping that if the tumor really is back that it shows it's ugly mug as plain as the circles under my sleepless eyes (that's really plain folks).

I think that's all for now. I need to get back to staring at my kid.

Hugs and love to you all!

Wednesday

I want to clarify something. A friend told me last night that my last post sounded 'weird'. When I asked what they meant they said that it sounds like I want Lauren to be sick.

That is absolutely not true!

Lauren is already sick. I wish she wasn't, but she is and the disease she has is cyclic. That means she has days that the tumor doesn't secrete at all. I was just trying to say in my last post that I am afraid that the tumor won't secrete at all this week and this trip won't be very fruitful. It's not that I want her to be sick ever. I don't...never, ever. But if she is going to be sick I want it to show up while we are here having these tests done.

Clear as mud?

As for today it has not been a very eventful day. We were up at 12:00 a.m. and 12:30 a.m. for blood draws and a saliva test. Then again at four and eight for blood work and to finish up another 24 hour urine test. We are meeting with Dr. Ludlam later today and starting some test that requires her to take dexamethasone every six hours through Friday and then they will inject some other type of medication into her (that will make her really sick) and they will draw blood every thirty minutes for a few hours to see how her pituitary is reacting to the injection. I anticipate lots of seizures from this test. If she has too many seizures part of her brain shuts down and she looks like she had a stroke. It's scary when that happens. The last time it did we spent a week in the epi unit.

I will post again after we meet with Dr. Ludlam.

Thanks so much for all the prayer and support. You are all so amazing!

Tuesday

Today was a good day. Well it was good unless you are the alarm clock in our room, in which case you might have been hit once or eight times. We are in the middle of 32 hours of blood draws that started at 12:01 this morning. We have to get up, get dressed, go down to the Ambulatory Infusion Center, get the tests done, go back to our room, lay down, close our eyes, hear a loud beeping and beat the alarm clock and then get up and start it all again. We repeated this process several times last night and today (minus the part about getting dressed...eventually we just went in our pj's). We will be testing the same way tonight and all day tomorrow. It's quite exhausting.

Lauren is feeling pretty well. She still has some pain where the PICC line was put in, she had some chest pressure/pain after a cortysn stim test, and some dizziness when walking around. Other than that she has had nothing negative to say.

Unless you think calling the alarm clock a doodie head is negative.

Tomorrow we meet with Dr. Ludlam. I think I told some of you that we have the CT scan and MRI tomorrow, but I was mistaken. Those happen on Thursday. Tomorrow is just lots more blood work and the doctor's appointment.

I must admit I am ready to go home already. I miss Dave and Brookie. Plus the TAKS scores came in and I wasn't there to congratulate my students (who all did really well on their reading tests). I'll just have to give them big hugs when I get back.

I have met a few women here with Cushings. One girl went through this week long testing protocol three times with no high results to help her get to surgery. She finally got high results testing at home and is heading to surgery next week. It worries me to hear that kind of story. So many people helped with this trip and I feel like expectations are high for something big to happen on this trip. I hope we do get to the bottom of things quickly, but I'm worried it won't go that smoothly and people won't understand.

Oops...Brookie is calling from Mrs. Wilson's house (that's where she is staying tonight). Talk to you guys tomorrow!!

quick update

Hello internets! Whew. What a day. It was by far the easiest testing schedule that Lauren will have all week. All we had to do was some blood tests, start a 24 hour urine, and get a PICC line put in. Everything went beautifully when they put in the PICC line. It seemed almost too good to be true and of course, it was.

About 45 minutes after they put in the PICC line and let us go back to our room we received a call from the Ambulatory Infusion Center. The radiologist looked at Lauren's chest x-ray and was not happy with the way the line curved at the end. Apparently it was too close to her heart. So they asked us to return immediately to have it repaired. I must admit this scared me a little, but I shouldn't have worried. They fixed it up and sent us on about our way. It was no big deal.

While we were in getting the PICC line we met another patient that is undergoing the same tests Lauren is. She was very nice. She ended up taking us around and showing us a few sites (she is local). Today was her birthday and we took her out to eat for dinner.

Lauren's PICC line is very sore. She feels like the tube is poking her. They said it is probably hitting exposed nerves which can be painful. She is icing the cut they made and taking pain medication. We hope it feels better by tomorrow.

We start more testing tonight (well technically tomorrow morning) starting at 12:00 a.m. She will test again at 12:30 a.m. and 4:00 a.m. and then 800 a.m. and noon (and so on and so forth). For the next 36 hours she will be testing around the clock. Sometimes it is just blood draws. Sometimes it is urine or salivary collections or stim tests.

Thanks for the prayers and nice notes. We love you all.