Monday, October 24, 2011


A little update on our Bup.
He's still doing so well. Enjoying pre-school although he always says before leaving the house "I don't like school. I don't like the sign that says school. It's a girl sign!"
What?! ~ can you see my eyes rolling and head shaking and the we'll just let that slide body language?~
Bup has recovered well from surgery, for all intents and purposes. Of course, the "other" seizures are still lurking. The current Topamax and Trileptal regime barely keep the Seizure Monsters at bay. If I am an hour late giving Bup his morning meds, he will seize at least once throughout the day.
And yes, I am THAT irresponsible mom that sometimes gets caught up in running late and getting the older boy off to school which means Bup may or may not receive his meds late. It has happened. Not often, but it has.
Next month it's EEG time. Wuhoo! Actually, as much as I hate putting R through them, I really want one done and want to hear about the results. I'm "looking forward" to this appt as I there are some questions lurking....about a couple of new drugs. One to shrink tumors and the other to shrink the skin tumors, facial angiofibromas.
Then there is the sleep concerns to address...which I will be firing off an email to Nurse Neuro and Dr. ENT tonight. A year ago Bup had an adenoidectomy.
Recently I had the sleepless pleasure of resting beside R while he slept. That child snores louder than his dad! (Sorry Honey!)
I always found it interesting that he sits up to "turn over" in his sleep, when really he sits upright...then flops down. Now, I'm pretty sure I know why. Be Cause he is waking himself up from not breathing. It was quite alarming to lay there and listen to his breath stop....even if just for a few seconds....over and over again throughout the night. I had no idea. I was sure there was no apnea.
Yeah, well, until this past March, I did not know he seizes at night either.
The Mother of the Year Award is quickly slipping away. See it go?
What will the Docs do for a little one with Apnea? Can you imagine Bup with a CPAP machine?! This is the child who shakes and fusses when I wipe his nose and who has NEVER picked his nose. Nasal prongs or a mask for a CPAP???? Now there's a torturous idea!
So....although R is doing phenomenally well, there are still issues, big and small, some mentioned here some not at all....yet.
Wed is an Opthamology appt to check on the tumor in his right eye. We are expecting that to be an uneventful new information....other than the crying, and struggling and yelling that will take place.


  1. You are NOT an irresponsible Mom, just a regular one! Noone has to be superwoman all the time and since you do your fair share of "hero work" you're allowed a few slipups. Yay for Bup - hugs for Mom!

  2. I agree! You're a great Mom and not a robot. You do an amazing job with all you have to juggle. REALLY.
    YOu're a fighter and an advocate.

    I hope your appts are good news!