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.

Prayer Request

I was halfway done with a light and fun post when I received a text from home (we are in the hospital in Seattle right now) saying that two brothers from the town where I live were in an accident. They are both wonderful people with wonderful families and beautiful sweet, children. Neither are doing well at all. Obviously I stopped writing my post and turned my attention to praying. If you read this, whether you know them or not, please, please pray for these men. Their names are Tyler and Trey. They need all the prayers they can get right now.

I had so much to tell everyone, but that will have to wait. For now here is a quick update on us. We made it safely to Seattle and are settled in at the hospital. Tomorrow is by far our easiest day of the week. Lauren has a few tests first thing in the morning (just starting a 24 hour urine test and having a few blood tests done). Then at one she has her PICC line put in. She is really nervous about this, but I know she'll do great. Then I think we are done for the day. We will start her blood draws and the other tests at 12:01 a.m. on Tuesday and will have to report to the lab four or five times before dawn for tests (and then she'll have lots more during the day Tuesday).

I will update again tomorrow night. Please pray for Trey and Tyler.

Does Midol come in chocolate flavor?

As soon as I get the girls straightened out I have got to get myself to the girly doctor, and by girly doctor I mean the one that has the stirrups and the gloves (sorry Dad) (and any other unsuspecting male that stumbled upon my blog). I need to get my hormones checked out. Something weird is going on. It could just be stress, but man, my body is going KUH-RAY-ZEE! I am emotional, my face is breaking out, and I have so many periods now that I could be the Declaration of Independence. Only if I were it would read something like this...

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Chocolate.

Don't be offended. It's just the hormones talking. Plus, the words chocolate and happiness are pretty much interchangeable anyway.

Speaking of happiness, my mom gave me the prettiest bracelet for a belated birthday present last weekend which made me very happy. It was made of sterling silver beads and would have gone with just about everything. Notice how I used the past tense when I described my new bracelet? I bet you are wondering why. I know my mom is.

Well, it's like this. I was in the bathroom today at work and when I was finished taking caring of my girly business (sorry again Dad) (and random strange men) I went to wipe and my bracelet slipped right off my wrist and landed in the potty with an impressive splash that my bottom did not appreciate. I sat there for a moment in stunned silence, looking down at my beautiful new bracelet resting at the bottom of the toilet. I wanted to reach right down and grab it, but ewww. So I thought to myself, oh I know! We have gloves in the nurses office. I'll just run and grab a pair of those and then fish it out. My brilliant plan would have worked too, but I was forgetting one thing.

Automatic toilets.

Yes, that's right. Our school went all twenty-first century this summer and as soon as I stood up it was bye-bye bracelet, hello Christy screaming in horror and jumping around with her pants around her ankles.

Curses on you futuristic toilet! Did it ever occur to you that I might not be finished pottying yet? Maybe I was just getting up to stretch or maybe my left cheek was going to sleep and I needed to move around a little or MAYBE, just MAYBE my lovely new bracelet that my mom gave me for my birthday fell into your evil, watery bowels (no pun intended) and MAYBE I wanted it back. But noooo, you just had to get into a hurry to show off and flush before I was ready.

Okay. It just occurred to me that I was talking to a toilet. A toilet that I seriously doubt reads my blog. See what I mean by hormonal?

All men may be created equal, but all toilets are not.

(And I could really use some of that chocolate about now)

Rambling

Here are a few more pictures taken by Lauren. I may have posted the picture of Madame Dog already. It is one of my favorites. It always makes me smile. I can imagine how Lauren looked trying to lay under that squatty little dog just to take that shot.

I can't believe it is less than a week until we leave for Seattle. I am both excited and nervous. I am nervous because I have met some other mothers of children with Cushing's Disease so I have a pretty good idea of what is in store for Lauren this week. It won't be a fun week for her. In fact it will be a really rough week. Of course I am excited because this is the first big step on the path to Lauren's cure. She has been sick for so long. To the outside observer one would think she was healthy. She doesn't whine or carry on about her pains, seizures or the mental effects of her illness. She puts on a happy face and does her best to enjoy each day. She deserves a normal, healthy life. She shouldn't have to fight for that, no child should have to fight for their basic health.

I spent a lifetime of watching my sister fight to feel good...a lifetime that at times seemed like a hundred lifetimes. She fought hard and was always a positive person, even in the most difficult of times. I see a lot of her in Lauren. Lauren dreams of her often at night. She loves these dreams. It makes her feel close to her Aunt Noo Noo. Sometimes I think Shanna is coming to visit Lauren in her dreams to help her through this rough time. That sounds like something she would do. She loved the girls so much.

I wish she would visit me too. I really miss her.

If I was any more thankful you'd have to stuff me for Thanksgiving

I took Brooklyn to the Nephrologist on Friday and things went very well. He doesn't think anything major is wrong (thank You God!), but sent her to the hospital for a renal ultrasound just in case. If nothing shows up amiss on the ultrasound he wants us to try six weeks of bladder retraining. He thinks she is never fully emptying her bladder and that is allowing bacteria to grow and I guess causing some type of protein to be there. So all we have to do is make her tinkle twice in the morning (about twenty minutes apart), twice around lunch and twice before bed. This is so she will learn what it feels like to have her bladder totally empty. Then we just go back and see if the protein is gone. If it's not, we start back at square one and look for a different answer. I have my fingers crossed that this is all that was wrong and we have nothing serious to deal with.

She hasn't been throwing up anymore either. That stopped a day before the Nephrologist appointment. Since she was feeling better I called and canceled Monday's appointment with the GI guy in Dallas. I can always get another appointment if the problem starts up again.

Whew! One sick child better and one to go. We leave next Sunday morning for Seattle. I am getting very nervous. She is going to have some pretty tough tests next week and I just pray, pray, and pray some more that they find everything they need to set up her surgery.

I have to share the most amazing thing with you guys. On Thursday before we left for my mom's house we checked the mail and there were three cards in there. The first was signed by our Sunday school class members and there was 1200.00 in it. The second was signed by another lady in our church (and others...it really said that...'and others') and it had 750.00 in it. The last wasn't signed at all and it had 300.00 in it.

WOW.

God is so good ya'll. I totally didn't know how we were going to make it through this month after buying the Seattle tickets. Then there has been all the driving back and forth to Dallas with Brookie (at a hundred dollars a trip), all of Lauren's medications, and other expenses that were just making me a nervous wreck. I was trying my very hardest to trust in God and not fret, but this is by far my biggest weakness. I just worry myself sick over things instead of having faith and trusting that God will meet our needs. I have no idea why I do this. He has never once let us down, but still I worry.

Dave is going to stand up at church Sunday and thank everyone, but I want to say it here too.

THANK YOU ALL! Thank you so very much. I cried when I opened the cards. Dave teared up. Lauren stood there with her mouth hanging open, just amazed that people cared that much about her to do this. Brookie asked for a hundred dollar bill. Sorry! Three out of four grateful hearts isn't bad though!

I know God is going to pour blessings down on each of you, just as you've blessed us.

Bottoms and Blessings

We had quite a bit of hullabaloo and excitement at our little elementary school today. The tornado siren went off in the midst of an awful storm. We have no basement in our school so we lined up all our precious little children in the hallways and had them bend over facing the walls and cover their heads with a book.

Yeah, I know. It's the best we can do in an emergency. Well, that and pray.

I don't get too nervous during storms, but at one point things looked pretty bad out the double doors of the school and I wondered if rows and rows of tiny butt cracks would be the last thing I'd ever see.

What?? What did you expect from hundreds of bend over children? All you could see of them was their cracks. It looked like the Texas Public School of Plumbing. All we needed was a few tool belts and some training in the art of overpricing.

No offense to the plumbers out there (or their cracks).

Although while we are on the subject of cracks (how did that happen again?) I'd like to make a suggestion. If you happen to be a plumber and you go out knowing full well that your crack will be making an appearance then might I suggest a little big of waxing? Naked crack is one thing, but naked crack with hair...well, that's a whole other (furry) animal.

Ahem.

What was I saying again? Oh yes, the tornado. We were blessed and the tornado missed our town and our school. We had a few power lines and trees down, but nobody was hurt (that I know of). The Lord is so good.

And now on to other important things.

Like my hair. It was pouring down rain when I got out of the shower this morning so I decided to just let it dry naturally. I have naturally curly (aka frizzy) hair so it is a big fat waste of time to fix it on a rainy or humid day. No matter how much I blow dry and straighten it, it still tries to go curly on me. So instead of fighting with it today, I just let it curl. I didn't think it looked all that bad...at least I didn't think it was all that bad until I got to school.

You'd have thought I'd grown a moustache and changed my name to Frank. They giggled. They stared. They pointed. They fainted.

Okay. I made that last one up. But they really did act shocked and somewhat appalled. One little third grader said, "Your hair is really too curly for me, but it works for you." I said, "It's not a new hairstyle. It will be back to normal tomorrow," and she was sooo relieved. She let out a huge breath and said, "Oh thank goodness."

So you live and learn. Today's lessons:

1. If you have a hairy crack, be sure and wax it. You never know when there is going to be a tornado. (Unless of course you are a plumber, in which case you can dress however you want and charge whatever you please).

2. Do not wear your hair in big, frizzy curls. This isn't the eighties.

3. I work with a wonderful group of women who put the safety of the children in their classes before their own safety without giving it a second thought.

4. I am blessed.

Brookie

Brookie and I made the eight hour round trip to Dallas to see the pediatric Urologist today. I couldn't wait to go so that I could find out what was wrong with her and stop worrying so much. Unfortunately I didn't find out anything. This doctor is sending her to two other doctors. One is a nephrologist (kidney specialist) and one is a GI doctor (abdominal specialist I think). The only thing I really learned was that there was still protein in her urine and that sometimes people just have that for no reason and it is nothing to worry about. We have to go to the nephrologist to find out if Brookie is one of those people. I can't wait to tell my boss that I have to miss even more work. That should be fun.

The good news is that the 'spells' of sickness and pain are getting farther and farther apart. She made it most of the day Saturday without getting sick. We walked all over an art festival in Austin and she had no problems. It wasn't until later that night at the One Act Play contest (where we placed second...woohoo) that she started throwing up again.

While we were at the festival Brookie had a caricature done of herself. She loves this picture. She thinks it is so cool to know what she'd look like if she were a cartoon. I told her if anyone should be in the funny papers it is her! Here is the picture she had drawn:

I won't know the dates for the other two appointments until tomorrow. I will be sure and let everyone know how they go. Thanks for all the prayers and well wishes!