Domestic goddess

I was feeling domestic today. We didn't have any pancake mix. SuperD almost gave up, until I reminded him that people used to make pancakes without Bisquick. I pulled out my Better Homes & Gardens cookbook, whipped up some waffle mix, and made these:

Pinky wanted some chocolate chip waffles, but we didn't have any chocolate chips. I took dark chocolate bar that I got from Teacher Appreciation week, broke it into small chunks, and make dark chocolate chip waffles. Oh, ye of little faith. I may not be the the chef SuperD is, but I am resoursceful.

Proud Mom moment

I'm so proud of my kids! They worked hard this year, and it paid off! Despite having difficulty staying on task during class, The Brain earned mostly A's during his fourth grade year. His daily grades were all over the place, but they averaged out just fine. Obviously, Reading is the area where he struggles most.

And even with her crazy-hard schedule, Pinky pulled out straight A's! As if Freshman year wasn't hard enough, this was an amazing accomplishment, considering the number of before and after school hours she logged in for marching band the first semester. And she had two year-long pre-AP courses and one semester-long pre-AP course. Her first semester Health grade doesn't appear here, but she made an A there, too.

So, thanks for indulging me for a moment while I brag on them because I am awfully proud!

A little time with God

I was up early this morning and noticed a strange, apocalyptic, orange glow shining through all of my windows. I stepped outside the front door to view the misty sky after a thunderstorm and saw this:

Did you see the reflection? I don't think i have ever seen a double rainbow which extends from horizon to horizon! This video, in no way, fully illustrates the brilliant colors that I saw when I looked up into the sky. It was truly AWE-some!

What a shame that everyone in my house was still asleep. I had no one with whom to share such a beautiful moment. Just me and God.

So what caused it?

Once C's spinal headache was cured, we began the quest to discover what caused his initial ER visit. Every doctor who evaluated him mentioned at least one of three possibilities: mini stroke, seizure, or migraine. The original CT scan was normal, so his pediatrician referred us to a neurologist, who ordered an EEG.

In order to perform an EEG, the patient must be sleep-deprived so that they sleep during the test. SuperD jumped at this opportunity to stay up all night and play video games with C! Altogether, they only slept 3 hours that night. Well, SuperD went back to sleep after C and I left for the hospital. Keeping a 10YO boy awake on only 3 hours of sleep proved to be very difficult. He tried to sleep in the car. He tried to sleep in the hospital lobby. He tried to sleep in registration. He tried to sleep in the waiting room. Boy, was he mad at me for keeping him awake!

After all the electrodes were attached, he finally slept for about 30 minutes. That's all he got because the neurologist wanted to see him that same day. I bribed C to stay awake by taking him to IHOP, and I treated myself to some brioche French toast. YUM!

The neurologist was impressed by the amount of details I recalled from C's incident, and the video was very helpful, too. After his evaluation, he determined that a mini stroke was unlikely for such a young boy. He was leaning more toward a partial seizure or a confusional migraine. Either would explain why C was left confused and unable to communicate. In order to gain more clues, the neurologist ordered an MRI. 

I was very worried about this test. How would my active little ninja lie still long enough for the technician to get pictures of his brain? Would he suffer from the same claustrophobia I feel? 

Other than the trauma of having yet another IV in his arm, C was a trooper. The nurse said he was fantastic! He didn't move at all! They even let him have a picture of his brain! C said he didn't realize how big his brain really is!

The next week, the neurologist asked me to come in for an appointment to discuss the results of the MRI. As I sat in his waiting room, I began to get very nervous. The doc said he saw nothing to indicate that C was prone to seizures. There was no damage to indicate stroke or seizure, so he was convinced that C had experienced a confusional migraine. There is no conclusive evidence, but he seemed to have ruled everything else out. Unless C has migraines which increase in number or intensity, the doc said there was no need to see him again for migraines.

Then the doc told me that he had seen something else on C's MRI. C has a type 1 (mild) Chiari malformation. The base of his cerebellum extends about 6mm beyond the base of his skull. His condition isn't causing him any problems which would be associated with more severe types of malformation. In fact, it's possible that he will never suffer posterior headaches or numbness in his extremities caused by the brain pushing on the spinal cord. It's also possible that he may develop symptoms later in life. We just don't know.  So, quite literally, C does have a big brain! As you might imagine, this news led to all kinds of jokes at our house. 

So, I've decided to cease referring to my son as "C". I've toyed with several different nicknames, such as Megamind or Brainiac. But I think I've settled on "The Brain." Since we're huge Animaniac fans at our house, A will be known as "Pinky". After all, one is a genius. The other's insane. You can decide which is which.

Complications

While C appeared to recover from the episode that sent him to the ER in the first place, he soon developed a horrific headache. Tylenol didn't help much. Two different people told us they thought it could be from the lumbar puncture (LP) he had at the ER.

About 40% of people who undergo an LP develop a spinal headache within 24 hours of the procedure because they develop a tiny leak of spinal fluid. In most cases, the body repairs this leak within the next 24 hours. One nurse friend recognized what was occurring and told C to lie down to relieve the pressure. As long as he did that, he was fine. She advised us to go immediately to the local children's hospital in case he needed an additional procedure to repair the leak. 

That ER visit was a frustrating one. After a long wait and an extensive evaluation, the doctor sent us back home to wait it out. He wanted to give C's body more time to heal before making him undergo another procedure. Our instructions were to keep him lying down to relieve the headache while giving him Tylenol and LOTS of fluids, preferably loaded with caffeine. Oddly, caffeine helps because it restricts blood vessels in the brain. The doc wanted us to wait another 36 hours. I thought SuperD was going to have an aneurysm! Watching his son wrythe in pain was almost more than he could bear.

So, about 72 hours after the LP, we made our third trip to the ER. This time, they admitted C to the hospital so that they could perform a blood patch. This procedure happened in the sterile environment of the OR, with two anesthesiologists on hand. One monitored the anesthesia, while the other drew a small amount of C's blood and injected it back into the area near the original puncture. This blood formed a clot at the site of the leak, relieved the pressure on the brain and spinal cord, and stopped the headache.
 

The relief occurs almost immediately. Unfortunately, anesthesia also can cause a headache, so C's head still hurt for a little while, but the pain was not as intense.

Within an hour, C was was not only sitting up, but he was anxious to explore the hospital! 

I thank God for my friend, Trish, who sent us to the children's hospital, brought items to the hospital that we had forgotten to bring, and sat with us while we waited in the ER. She spends all week at the hospital as it is but didn't hesitate to wait with me. She and her daughter, A's best friend, kept my daughter company while we spoke with the doctor.

The scariest day of my life

(written April 24, 2013)

I've had a lot of bad days in my lifetime, but April 10, 2013 wins the prize. I have never been so frightened. I'm still trying to get over it. For two weeks now, I have been a basket case. The tiniest bit of trouble sets me off crying. I feel as if I'm about to break. Or fall apart.

That morning, I woke my son with the usual amount of difficulty. He is really hard to rouse. And I thought SuperD was a hard sleeper! C wasn't moving much, wouldn't open his eyes, and didn't want to talk to me. That's typical. The more I tried, the more I realized that his blood sugar must be low. I made him get out of bed and go to the kitchen to check it. I figured it must be really low because he couldn't even check it by himself. It was as if he couldn't remember what to do. He kept trying to prick his finger with the test strip instead of the lancet. Sure enough, it was low, but only 71, which is not drastic. I gave him something to eat, thinking it must be truly lower than it registered. I left him in SuperD's care as I took A to school.

When I returned, C was moving at a snail's pace putting his clothes on. This, too, is typical because it takes a while for him to really wake up. Each time I passed his room, I urged him to kick it into high gear so we wouldn't be late for school. It became apparent to SuperD that there was something wrong as he watched C try to button his shirt. He was like an Altzheimer's patient who couldn't understand how to work a button. We checked his blood sugar again, and it had come up into the normal range.

We started asking him simple questions, like the hospital professionals do whenever someone is disoriented. He couldn't tell us his name, his age, his school, his teacher's name, or our names. It was terrifying. We decided to take him to the ER. I paused briefly to video him trying to answer these questions, just in case he recovered before we got there. I wanted the doctor to see what we had seen.

Both answers he attempted sounded nothing like what he should have said. It breaks my heart to see him so frustrated. The video turned out to be unnecessary because nothing had changed by the time he was admitted. The doctor ran a variety of tests, including blood work, urine, CT scan, and lumbar puncture. All of the tests came back normal. The doctor was stumped.

There are two things that stay with me from during the hours of waiting. When I asked C what his sister's name was, he couldn't tell me. But when I showed him her picture, he smiled and said her name. Also, he finally figured out what his name was, and any time someone asked him a question, his go-to answers were, "I don't know" and "I'm C." it was as if his name was the one thing he knew for certain, and he was clinging to it with all he had.

While waiting for the results of all the tests, C took a long nap. When he finally woke, his speech patterns were back to about 95% of normal. He was talking, hungry, and telling jokes. He was almost himself. It was still as if there were small holes in his brain function. Certain words were still lost to him. He mispronounced several things. But he answered every one of our questions that he had forgotten before.

We were discharged because they could do nothing else for C. Since that day, we have been back to the E.R. two times, had an overnight stay at the hospital, had an O.R. procedure, followed up with his pediatrician, had an EEG, seen a neurologist, and scheduled an MRI. It's been a long, tiring two weeks. And we may never have any answers as to what happened that day, which may be the scariest thing of all.

What's in a name?

I've lived in Oklahoma all my life. I'm 41 years old. And yet, every spring, every tornado season, I hear the meteorologists mention towns I've never heard of before. Granted, many are old Indian names, but they certainly are unusual. Just this morning, I heard a new one. So, here are the ABC's of Oklahoma towns:

Arkoma
Bokchito
Corn
Dibble
Etowah
Forgan
Gotebo
Hoot Owl
Indiahoma
Jet
Ketchum
Lookeba
Monkey Island
Ninnikah
Ochelata
Pocola
Quay
Roff
Skedee
Talala
Velma
Wapanucka

A special nod goes out to Nowata, Oklahoma, because since I was a child, I thought that was the funniest name.