Tuesday, March 22, 2011

Older Bolder

Here I am, old enough to have a teenager (wow), and I am definitely starting to feel my age! I have always heard that when you get older, you get a little bolder and you start to say and do things you would never have dreamed before....I believe it!

Alyssa received some money for her birthday. Actually, as sad as we were to be celebrating such a big milestone so far away from home, I think her day turned out pretty well. Our friends, the Rohls, came over, and we had three other of our friends here while their parents loaded a moving truck, so it felt like a party. I have been so touched at the way the Rohls have taken us in as their own. She opened some gifts and a big box that we got in the mail from Grandma Jackie (that actually had a little bit of something for everyone). The Rohls brought a bouquet of balloons, Emilie and Grace (one of our friends) made decorations-o-plenty,  and we had lots of food....it was fun. :-) That afternoon, we took Alyssa to get her first make-up and taught her how to put it on for a natural look that would be appropriate for a thirteen year-old girl. That night, her Daddy took her on a date....dinner and a movie!

After all the partying, she had some money and gift cards that were burning a hole in her pocket. I had a noon appointment at the eye doctor yesterday ( in the mall), so we decided to go and make a day of it. I told the girls that once my appointment was over, we could go visit the places they wanted to go.

Okay...so here's where the "older/bolder" part comes in.

We arrived at the eye doctor five minutes early...nothing short of a miracle for us. There are some appointments you totally expect to wait for...the pediatrician in the middle of flu season, the OB when he has an OB emergency (those babies aren't always very predictable), but the eye doctor.....um, how many eye emergencies are there? I filled out my paperwork and the nurse took me back for all the "preliminary" stuff.

And then we sat.

And sat.

And sat.

And sat.

I could hear her (the doctor) talking and laughing with someone. And then this fella walked in and said he was there for some experiment with the doctor, so they took him straight back for about 5 minutes and then back up to the front to make a future appointment.

And then I sat some more.

Then her 12:30 appointment arrived. When I heard the lady say that, I laughed out loud. (Whooops...it totally slipped).

At 12:38 I very nicely told the lady at the desk that I was going to have to leave.

She looked shocked and said, "Are you sure?"

I said, "Yes. I did not allot time for this kind of a wait today and I have a lot of other things on my schedule today (not to mention I was sitting in a tiny waiting area with four ticking time bombs.)

We got up to leave, but the chord to Alyssa's ear buds was tangled around the wheel on the stroller, so after the few minutes it took to finish that, we left at 12:40. Was that unreasonable? A year ago I wouldn't have done that. Maybe I have grown hard from dealing with so many doctors, or maybe I am just getting old, but I have come to expect better service.

So we spent the time at the mall I had promised the girls. I also realized how DESPERATELY we need for Clara's adaptive stroller to come in. It is taking FOREVER! She had a bit of a rough day yesterday. There were a few times I looked down at her in her (too little) stroller and she almost looked catatonic. I don't like it when she looks like that.

I was starting to let myself feel a little encouraged about the possibility that her newest diagnosis was her only diagnosis. The day after I talked to Dr. Kendall, Dr. Berenson, Clara's neurologist in Atlanta...aka, her boyfriend, called out of the blue and said that he had talked with Dr. Kendall and that he was very excited about her newest diagnosis and thought there was a great possibility that after treating Clara for the rickets, we would be done. (That is a gross paraphrase.) Additionally, remember the supplement I told you that Dr. Kendall started Clara on for her muscle pain? Well, I got the nerve to stop the ibuprofen about a month ago, and she has had no muscle pain.

Until yesterday..... So it is those kinds of days that I really think we are dealing with both diseases, and I don't see how in the world we can take away the mito diagnosis. She was exhausted all day, had a hard time focusing, and every muscle in her body hurt. She had ketones in her blood. It was a low level, but they were still there. Does rickets really cover all of of her symptoms? I am very apprehensive. Hopeful, but apprehensive.

The rest of the day was nuts, and didn't get any less weird. I had promised dinner to a family last night, and when I got it there, they were not home and I haven't heard anything else from them. Weird. I had to leave the food with a neighbor. I hope they got it.

Last night was wonderful, though. Bible study started. We are studying from the book Lies Women Believe by Nancy Leigh DeMoss and I can tell you, it's gonna be great! God is already starting a huge work and I know He is going to do some pretty incredible things through this study. If you have not read the book (and you are a woman), I highly recommend it.

Otherwise, we have been enjoying the beautiful Spring weather. It is raining cats and dogs today, but it has been so nice the last few days I can't get too upset. :-)

So...I am off to make another eye appointment somewhere else. I pray your day is blessed!

Much love,

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