I love a good sunburn with such ridiculous lines, that most of my wardrobe will fail to hide my stupidity. But rather than take responsibility for my failure to apply sunscreen anywhere but my face, I will instead blame the organizers of the annual Miller Lite Chili Cookoff for moving it from the tree-filled shady location at Stone Mountain Park to the the black asphalt parking lots of Georgia International Horse Park in Conyers. No trees. Just asphalt. I will give them credit for a larger space that made it easier to walk around, but I’ll push people out of the way if it means the return to the sheltered haven by the park.
We like to go every year, but we missed last year–the final year at Stone Mountain–for a most hilarious reason. My mom went to the ER. Yes, I just referred to my mom going to the ER as hilarious. You read that right. Ok, it wasn’t hilarious at the time–at least not for a few hours–but it’s an interesting story. It had been a stressful few months with Connor’s time in the NICU and diagnosis, and that morning, another stressful issue (nothing to do with Connor or us) came to light. I called and talked to my mom about it that morning. About an hour and a half later, we arrived at my parent’s house to drop Connor off. This was the first time we had ever come over that my mom didn’t come out to meet us at the car (something I often like to point out she never did when it was just me coming over). When she finally came downstairs, she looked surprised to see us. “What are you doing here?” I thought she was joking. I reminded her they were babysitting while we went to the cook off. “Did I know about this?” she asked, confused.
Forgetting Connor was coming over? Yeah right. Something is weird. She usually only blocks out memories that involve me as a teenager. She looks at Connor and says, “Oh, aren’t you cute,” in a way that indicates this is some random baby mysteriously propped in a chair in her sunroom. My dad and I look at each other. Then she asks why we’re there again. And when we answer her, she clearly doesn’t remember that we just told her. She also can’t remember what she had for breakfast, where they went for breakfast or what neighbors they ran into while they were there. She’s asking the same questions over and over, and clearly isn’t forming any new memories. And me? Great. I realize when I called her that morning I gave my mom a freakin’ stroke.
So rather than downing 900 samples of chili, we head to the ER. My mom keeps asking us the same questions over and over. She’s on a repetitive loop. Then she declares, “I’ve had a stroke! Self-diagnosis for you!” She repeated that roughly 647 times by the time we reached the hospital, and thought she was figuring it out for the first time every time. Once we reached the hospital, since she wasn’t able to retain new memories, she kept thinking she just woke up there and continued asking the same questions. It was the weirdest thing because she was looping like a tape recorder. Same comments and questions, same intonations, same jokes. Blood pressure was off the charts. Scans, an MRI, and a few hours of me battling the urge to video this insanity with my phone, and they come back with an answer. No stroke. In fact, everything looks great. Diagnosis: transient global amnesia. Lasts roughly 24-hours and can be caused by a stressful event. She will completely recover, and it is unlikely to reoccur. It is also extremely rare. Yay us and our predilection for weird rare medical crap. It’s particularly weird because though you forget a big chunk of time and events, you don’t forget the basics, who you are and the basics of your life. So sadly, I was unsuccessful in convincing her she had promised to gift us $25,000 and turn over the keys to her ’66 Mustang.
So then the rest of the day could be spent repeating what was wrong with her when she would ask every three minutes. “Well that will teach you to call and give me bad news again!” I heard that 87 times before we left the hospital. At this point I was embracing the hilarity of the situation since I knew I hadn’t caused irreversible damage to my mother’s head. Regrettably, I did not record her at all. Though you can find YouTube videos of other people with this, and they pretty much sound the same. Hilarious that is. Especially hilarious, since she was going home with my dad who would have to field the questions for the next several hours. I did write a bunch of stuff down in a notebook though so my dad could tell her to read it when she looped.
Some people will do anything to get out of babysitting.
We’re pretty settled in the new house at this point. The dining room is still a mess, but pretty much everything else is in place. Chris has informed me he will not be meeting my two-month deadline to paint the entire house. He seems to think a year is more appropriate estimate for completing all the rooms. “But Becky,” as my friend Cat said, shaking her head “you stay home. Can’t you paint?” HAHAHAHAHAHAHAHAHAHA! Have you met my husband? I paint like I vacuum, it would seem. Willy nilly without leaving straight lines. I am but a hander-upper of necessary supplies.
Connor now has his very own playroom downstairs. It is chock full of fun and goodies for him, and secured so I can get stuff done. So what does he do?
How am I supposed to get stuff done when he looks at me like that?!
Then his favorite toy, his jumperoo, finally gave out after extended use past the weight limit. It was a sad day. This is how he uses it now:
I also decided the room I initially chose to be his was too small, so Chris got the honor of disassembling the crib again to move it. I’m delightful to live with.
Connor recently had a 30-minute EEG at his neurologist’s office, just to check in on the general state of things. Lo and behold, he actually had a seizure on it. Seizures are famous for not cooperating with EEGs, so getting one on a 30-minute test! Whoa. His neuro now believes what we have been seeing are complex-partials, pretty much what we’ve always battled, aside from infantile spasms. They are decreasing since putting him back on vigabatrin and hopefully we’ll get the just-right doses of vigabatrin and Onfi soon. He had his first ERG in quite some time on Friday. I’m not sure if he’s planning to be Miley Cyrus for Halloween or if he’s expressing his distaste for the boring peach-colored gown (where are my rockets?!).
I’m still on my fruitless quest to get a detailed report from Boston on his MRI back in August. We have the basic results of no growth, but we’re also supposed to find out how many tubers, SENs and specific locations. So I will continue on my 9,000 phone calls quest that every person who deals with a medical issue knows so well. Why does everything have to be so hard with hospitals, pharmacies, insurance, doctors… The only doctor’s office that I feel comfortable with response time is his neurologist. But I have to play games with:
the hospital in Atlanta
now apparently the hospital in Boston (which saddens me cuz I gave them props earlier this year)
insurance
the ophthalmologist
the pediatrician
the mail order pharmacy
I hate when I like a doctor, but staff makes life hard.
My parents just adopted two kittens, and they seem even more fascinated by Connor than he is with them. And he loves kitties.
Sunday was my birthday. A lot has happened in my 23 years. (Shut. It.) Pretty mellow affair that started with brunch with Chris and my sister-in-law Donna and dinner at my parents. It ended festively while I was in the shower that night and heard Chris yelling “Becky!” Oh my god. This is it. We’re going to the ER. Connor must be having a status seizure–something we’ve never had to deal with. I run down in my towel…nope. He vomited. Everywhere. On himself. On Chris. On the floor. On the new couch. So emergency bath time and snuggling. He was fine. Fortunately it was only once and he was perfectly fine before and after. Which makes me wonder if this is the stomach of a toddler issue or a vomit seizure. Either way, he’s great now and expending his energy on keeping me from doing vomit laundry.
At least he’s helping spread Halloween spirit.
If you need me, I’ll be following doctor’s order somewhere:
My sister-in-law knows how seriously I take my health so she gave me this bracelet for my birthday:
Happy anniversary to my parents!
Reminder:
Informational meeting on financial planning for your special needs child this week! Wills, estate planning, a chance to ask questions, etc.
Thursday, October 10 at 7:00pm
Mount Vernon Baptist Church 850 Mt. Vernon Hwy NW Sandy Springs, GA 30327
Please RSVP to me at pin.the.map@gmail.com.
Massiah was diagnosed with tuberous sclerosis complex during utero or fetal development. My Warrior was born with tumors on his brain and in his heart. He also has tumors behind his eyes and cysts on his kidneys. He started having seizures at one week. At six months, he was diagnosed with epilepsy. At 17 months, he was diagnosed with complex partial epilepsy with generalization, generalized convulsive epilepsy with intractable epilepsy and tuberous sclerosis complex. His current diagnosis is partial symptomatic epilepsy with complex partial seizures, intractable, 
without status epilepticus, infantile spasms with intractable epilepsy and tuberous sclerosis complex. He may have anywhere from one to 18 seizures a day while taking medication. His current medications include Trileptal and Depakene three times per day in addition to Sabril twice a day. He takes diastat acudial when needed for emergencies. He will soon be taken off Sabril and start Onfi. He will also be taken off his other meds one at a time depending on his seizure control. His current neurologist at A.I. Dupont Children’s Hospital, has discussed the Ketogenic diet, Topamax, vagal nerve stimulator, ACTH and Banzel. He was on Keppra but needed to be taken off due to aggressive behavior. He has gone through numerous EEG/VEEG, MRI, CT and PET scans, sedations and ultra sounds.
Massiah has developmental and physical delays. I was told that he would be mute and mentally disabled due to the amount of white brain matter, tubers, and tumors on his brain. Doctors also informed me that he would need a wheelchair due to low muscle tone throughout his body, especially his legs. So, you can imagine my surprise when he started crawling and taking steps. Also, imagine my surprise when he said mom for the first time on my birthday; just weeks before turning one himself. Massiah receives aid from an early childhood educator, behavioral, physical, occupational, and speech therapist. He just completed the shapes puzzle by himself after working on it for over a year and now says 60+ words. Massiah is very active and energetic. He enjoys Jake and the Neverland Pirates and Mickey Mouse, legos, cars, air planes and throwing balls. His favorite movie is Disney’s Cars.
Mixed Up Mommy 