Another Day, Another Test

Today we go for more testing on Mya. The tests today will check her heart and heart function. Since the people at Kosair mentioned heart tests on several different occasions, we brought our concerns to the doctor’s attention. Based on Mya’s last episode, the doctor seems to think that Mya is having seizures, but she wants to rule out heart problems, and also sleep apnea. The last seizure happened through the night, and if it was brought on from breath holding due to sleep apnea, the doctor would be thankful. We’re not real clear on what the heart would have to do with seizures, but I’m anxious to rule out any heart problems.

We did take Mya to see the sleep specialist, and let me tell you, that was an interesting visit. Just imagine, when you walk into the room at the doctor’s office, what it looks like, the table with the paper draped over it, the sink, and all the scopes used for looking in the ears and throat. Well, at the sleep doctor, the room is actually a bedroom. I think my jaw dropped when we entered the room. It was nicely decorated with low lights, decorative pillows laying at the head of the queen size bed, a nice big recliner, TV, end tables, and all the makings of a bedroom. I have to give the decorator kudos; it was a nice relaxing environment. Bob and I sat on the recliner, and the doctor sat on the bed. Of course, we had to hear a lecture on sleep, sleeping patterns, and the importance of sleep. The doctor was very monotone, so it was hard for me to pay attention, especially with such an inviting looking bed. LOL! I’m joking. Personally, I didn’t care for the doctor at all. He was very condescending when speaking to us about Mya’s sleeping habits. He asked about her bedtime, as well as what time she gets up in the morning. I told him (she sleeps about 8 to 9 hours through the night). His response was, “now, do you think that’s enough sleep for a 4 year old?” I told him I didn’t think she had any issues. I got the look! I proceeded to tell him that she takes a 2 to 3 hour nap pretty much everyday. I was still getting the look. This doctor told us he thinks Mya is chronically sleep deprived. I’m thinking if he wants to see sleep deprived, he needs to ask about my sleeping patterns. Seriously! LOL! Anyway, we are scheduled to take Mya for a sleep study on the 9th, but I’m really not convinced she has apnea. We were sent home with a brochure that talks about apnea and the signs and symptoms, and other than snoring, Mya exhibits no symptoms. Even her snoring isn’t the choke and gag type snoring he was describing, it’s just normal snoring. That test may be ruled out!

On Friday we will take Mya back to Kosair for an EEG. If she’s having seizures, the Neurologist is hoping to catch the activity on the test. It’s really bothersome to me because we’ve had so many tests, and the Neurologist is ready to diagnose her with seizure disorder, or epilepsy, based solely on what we’ve told him, and put her on medication. Bob and I aren’t ready to commit to a lifetime of medication for our 4 year old. Of course, if the EEG shows the seizure activity, we will do everything needed to assure the seizures are controlled. On the flip side, if all the testing comes back normal, we’re back to “what’s causing the fainting, seizures and memory loss”?

When we speak of Mya’s memory loss, we’re not talking about her having no memory of the seizure’s, we’re talking about her losing an entire day’s worth of memory, or at least 6 to 8 hours prior to the seizure. As a mom, that’s scary. We know Mya is a bright child, and we know that she doesn’t forget anything, so when she’s not able to remember what happened the evening prior to the seizure, something isn’t right. Especially if it was a significant evening, not just an evening at home watching cartoons. My biggest concern is what this will do her learning development during her school years. Based on the past episodes, she would lose an entire days instruction if she had a seizure after school one day. I guess we’ll take what’s given to us and handle it the best we can.

We had another scare in the family. My brother, Joe, who was diagnosed several years ago with melanoma cancer, had a place come up on his head. The spot that came up was on the rim of the “hole” he has on the side of his head from the original cancer removal. Thankfully, he took immediate action and went to the doctor to have it checked out. It was nothing to be concerned about. The doctor checked him from head to toe and said he looks great! Wonderful news! The doctor did stress, since Joe is coming up on his 5 year milestone, he would like for him to have a PET scan done so they can catch anything that might be microscopic in size. Joe will schedule that and we’ll all keep our fingers crossed for the best.

Andrew and James put in a bid on a house yesterday, so that’s exciting news! I hope they are able to get a home of their own. The apartment they live in hasn’t been as nice as originally perceived. As with any apartment rental, they’ve had their share of problems. Now they know why the rent was a lot cheaper for the size of apartment they leased.

For Andrew’s MFA at Murray, he will still spend a couple of weeks, a couple of times a year, at Murray State, which isn’t bad. I was really pleased to hear that Andrew wouldn’t be moving to Murray. I can hardly wait to see something complete that Andrew has written. I’ve read a few of Andrew’s stories, but none of them have been complete, so I was left hanging for the outcome. The plans for the book to be published with Nickole Brown have been delayed to 2011. I was so hoping they would be able to complete that this year. I’ll patiently await its release!

I’ll have test results, and hopefully good news to post within the next week or so.

TTFN!