TAKS testing!

There is nothing that can drain a teacher like the TAKS test!  I am so, so glad to get this week behind us! 

Sunday is the children's musical at church.  They are performing Under God's Sea in 3D! It's cute and the kids are fun to watch.

I know it's bad, but at this point, I'm just checking things off my to-do list. 

With this show done, I'll only have 3 events left on my list before the end of the year!

Of course, not on the list is the cleaning of my class room.  OH MY!!

In the midst of the never-ending-events of our house, last weekend, I sliced open my right hand and am the proud owner of 3 very expensive stitches. 

It's an interesting story.

Saturday night, Doug was grilling steaks out on the back patio and I was in the kitchen unloading the dishwasher.  The cabinet that the coffeemugs are stored in is directly above the dishwasher.  So.. I was putting up a coffeemug and having to reach a little awkardly to do so. (I've only done this a couple of times a day for the last six years..) And I dropped the cup.  It hits the counter and bounces back up as it breaking into pieces.  One shard sliced open the side of my right hand.  Immediately I knew I had to have stitches!

So my mom came over and pulled the steaks off the grill while we were at the hospital. 

And that brings us back to today.  The end of TAKS week.

I'm hoping for steaks tonight for dinner.

The Merry-Go-Round

Defeated.


That’s how I feel today.

I had really high hopes for Maddie’s Rheumatology appointment yesterday.

The doctor came in and asked about the big picture as to what Maddie’s basic problem was. I handed her a copy of the spreadsheet.

The spreadsheet consists of doctor visits, blood work, x-rays and surgeries. There are 185 entries.

Let me say that again

ONE HUNDRED EIGHTY FIVE.

185 SEPARATE ENTRIES.

That’s not a typo.

And this doesn’t include well-child visits! Nor is it every visit to a specialist.

Maddie is 10 years old. Do the math. This is not a “normal” child.



So we talk to the doctor and she starts brushing us off.

The merry-go-round music might as well as have started playing.

Maddie doesn’t fit a simple clinical diagnosis for her symptoms and her age.

I am used to this merry-go-round.

But it doesn’t make it any easier to take.



Thankfully, Doug was with us and started asking more questions and pushed the doctor a little. She initially wanted to send us on our way, but Doug was able to convince her that maybe she could wait for the results from blood work before she said Maddie was fine.

I can’t explain to someone who has not walked this road how difficult it is to hear doctors brush us off year after year. I would give anything for Maddie to feel good. To be well. But she is not. A “normal” child does not wake up in the morning after nine hours of quality sleep exhausted. EVERY SINGLE DAY. A well child doesn’t live in pain EVERY SINGLE DAY! It is hard to sit and listen to doctor’s explain away documented problems as if explaining it away will make it go away.

So here we are. Again.

We have some really good specialists that have improved Maddie’s quality of life significantly. The problem is that they are focused on their specific area. Yes, that’s what they are supposed to do. But in the mean time, we don’t have a specialist that looks at the whole picture. We thought we might get that with Rheumatology. I guess not. Doug explained to the Rheumatologist that we are tired of being pushed from one specialty to another. That we need a quarterback. We need a doctor to take ownership and to look beyond the textbook. In fact, half jokingly, Doug told the doctor to take good notes, that she might write Maddie’s case story one day.

So, where do we go from here? I don’t know. First, we wait for two weeks for blood work to get back. It’s hard. We want it to be good, but we also need something to show up so that maybe we can get a diagnosis of something.

Four years ago we were told it could take 10 years for a diagnosis. I guess we will learn to be patient. In the mean time.. if any of you out there know a student or doctor that loves research and interesting cases… let me know and I’ll send you Maddie’s case. I have done all the research I can with what I have. I’m in the market for some good (free) medical books!

And now I’m off to update Maddie’s spreadsheet with yesterday’s appointment details.

Maddie's Team Picture

Cool huh.  Not everyone is pictured, but it's an awesome feeling!

Now that I have the group picture, I have to get busy on the thank you notes.

Oh my!

Texas Bluebonnets and kids.. it's the way we mark the passage of time.

Another year has come and gone.  Truly it is amazing how fast the year flies.  I want to savor these sweet moments while my children are young.

It seems like just last month we were taking pictures in the bluebonnets and Kylie was just a babe-in-arms.  And here we are, again, and we can't take a picture with her in the same place twice!

This year with the complete lack of rain, the flowers are sparce.  We could have found a new spot for the pictures I guess, but I love taking the pictures at our friends house.  In previous years we would stop on the side of a highway or go to an old cememtary, but with the danger of the trucks flying by and slithering snakes at the cemetary, I love letting the girls roam and play while we take some traditional pictures!

 

Amazing isn't it.  They grow up so fast! 

And while I'm not posting it here.... Doug took a number of pictures of me orchestrating the girls.  I think I'll do an entire page in the scrapbook of me trying to get the girls to stay in one place, to all look in one direction and so forth.  The pictures are funny.. but let's just say, I'm not looking like a hot mama. :)