The saga of the appointment

We had a bit of frustrating news this week.  We got a letter from Children's Mercy saying that Lizzie's neurologist, Dr. K, will be taking a one-year personal leave of absence beginning August 17th.  Of course doctors are people too, and I'm sure he has something significant going on in his own life so that he feels the need to do this.  However, it introduces a lot of unknowns into our situation since he's been Lizzie's doctor all along!  The last time we saw him, he said that Lizzie didn't need to be seen again for six months, but that would put her appointment in September, after he's gone.

As soon as I read the letter, I immediately called Dr. K's office to see if we could get an appointment with him anytime before he leaves.  I left a message for the nurse asking if we could see him anytime between now and August 8th.  They called back and said they didn't have anything.  The only appointments they had available were on August 14th and 15th.  I explained that I am an elementary school teacher, and I have to report back to work on August 8th.  I asked if we could come sometime before that if they had a cancellation, and they said yes, so I asked if they could add my name to a waiting list or something.  They said no, that I would just have to call the office a few times a week and ask about cancellations.  They asked if I had any other family members who could bring Lizzie to the appointment.  I said, "Yes, my husband could bring her; but I also want to be there to talk to the doctor because he's the one who is most familiar with my daughter's history, and if he's going to be gone for a year, there are some questions I'd like to ask him about her." 

I asked which doctor Lizzie will be seeing after hers is gone, but they couldn't tell me that.  They said it would probably be one of two but that ultimately the decision was up to the nurses, so I asked when she might be able to get an appointment with one of them if we waited.  Dr. A is gone to a conference in September, and Dr. P is only seeing patients on Mondays and Tuesdays in September and is already full.  So with either of them, we'd be looking at a date past the six months Dr. K recommended for her next appointment.

At this point, I was really discouraged.  If they'd let us know sooner that Lizzie's doctor was leaving, I would naturally have called sooner and we might have been able to get in before I have to go back to work.  August 14th and 15th are just about the worst possible days for me to miss work.  August 15th will be the first day of school for my students, so I absolutely cannot miss that day; but August 14th we have a mandatory meeting in the morning and the rest of the day will be spent doing last-minute things getting ready for the first day of school.  I called my principal and explained the situation, and luckily he was understanding.  He said that I had to be at the meeting in the morning, but that if I needed to be gone for a little while later in the day, I could do that.  So I called the neurologist's office back and set up an appointment for late morning on the 14th.  Not ideal, but it'll have to do!

In better news, Lizzie has another tooth about to come through, and she's getting a little more confident with her walking.  We'll keep her practicing!  Mostly we have just been trying to keep cool with the triple-digit temps this week; we're sticking with indoor activities.  We saw Mr. Stinky Feet at the library, and today we're going to Lakeside Nature Center.  Lizzie just goes along with whatever we have planned.  We are lucky to have such a good-natured, easygoing girl!

Quote

This was posted on the Talk About It! Facebook page the other day and I liked how it made the point that epilepsy is not a blanket diagnosis; rather, being diagnosed with epilepsy is only the tip of the iceberg. 

The following from the National Institutes of Medicine Report, "Epilepsy Across the Spectrum: Promoting Health and Understanding," helps illustrate why we ask everyone to help us talk about it:
 
"Epilepsy is a common and a complex neurological disorder. Epilepsy is not a single disorder but rather a spectrum of disorders -- the epilepsies. Further, epilepsy is more than seizures and may be accompanied by a range of associated comorbid health conditions that can have significant health and quality-of-life implications. Some people with epilepsy have lives that are essentially unchanged, while others' health and well-being are severely affected, and for some people, epilepsy is fatal. Communicating this range of outcomes and meeting the spectrum of needs are major challenges faced by the epilepsy field."


Thank you again to everyone who made a donation to Lizzie's Team for the Epilepsy Walk!  Your donations go to research about the disorder and provide support for people living with epilepsy.

A new tooth!

Lizzie officially has tooth #6!  She's going to look a little crooked when it comes all the way in.  She already has the two front and center teeth on the top and bottom, and one tooth to the right of those on the bottom.  This new tooth is to the left of the ones on the top.  No matter, I'm sure her lopsided grin will be just as cute as the one she already has!

Walking...but not talking

Lizzie is a walker!  She usually only does 2 or 3 steps at a time, but she can take as many as 6 or 7, and then she plops down.  We're trying to have her practice as much as she's willing, but it's slow going.  I'm sure before long she'll be running and I'll be asking myself, "Why again did I want her to walk?"  She does better with the walking if she can hold a toy in her hand.  Not a stationary toy, mind you, just something to hold onto.  I guess it gives her a feeling of security.  Her therapist said that's not uncommon for a lot of kids.

We are also trying to get Lizzie to make more sounds.  She blows raspberries and makes loud "aaaaaaah" noises, and sometimes she even shrieks loudly in the key of "ear-splitting".  I keep saying she's going to sing soprano in the choir someday.  But she doesn't vocalize a lot of consonant sounds; occasionally, but not often.  She says "mama" and knows that it goes with me, and she says "no" but I'm not sure she really knows what that one means.  Once in a while we'll get a "dada" out of her too.  We have tried teaching her some signs: more, finished, milk, water, eat, drink, peach, and cheese, and waving for hi and bye-bye.  "More" and waving are the only ones she does consistently, but we'll keep working on it. 

The doctor keeps saying that she is going to have developmental delays, but so far we haven't really noticed any big ones.  Maybe language is going to be where we see a delay?  Time will tell.