Monday, September 29, 2008
My Early Intervention coordinator told me she's never seen ANY mother so prepared. Excuse me as a pat myself on the back.....
I was ready with my arsenal of letters....for ALL her doctors stating why she needs a one on one nurse at all times while at school. I had hand outs on every type of seizure she has, the effect of recurrent epileptic seizures on the brain, web links to video clips of some of Ava's seizure types, and a complete two page list of every single time she's ever been to the hospital. Her complete neuro psych report, letters from the neuro to pedi, a representative from our local epilepsy center, one from our local special education advisory committee, and an advocate from RIPN (Rhode Island Parents Network). All people who spoke up during the meeting, asked questions I missed, and "had my back" at every corner.
I thought I was going to have to give the poor school nurse a brown bag to breath in after we gone done going through some of Ava's recent seizure scenarios.
As it turns out the school had been doing some preparations of their own in anticipation of Ava entering the school to receive special education services. To my surprise (and relief), the head of special education has had every intention of approaching the Superintendent to get Ava her one on one nurse.
My arsenal........was not needed after all.
Actually all the therapists, and the preschool teacher(s) were extremely appreciative to receive all the information about Ava's seizures, and seizure types. I also prepared a hand out for them detailing Ava's strengths, weaknesses, and how she learns best to allow them to get to know her a bit before she arrives. They felt much more at ease feeling educated about what they were dealing with. It felt good.
Even better.....I actually LIKE all the therapists.
Today was a good day.
On top of it all, I FINALLY got approval from my insurance company for our referral to Boston Children's to see the neuro and dietitian. Dr. Neuro called today to review the results of Ava's digitrace EEG. Same old story....Generalized spike and slow wave discharges.............
with an "mentionable" number originating in the left occipital region
Is it actually normal that I was excited? Excited about the fact that FINALLY she might be showing us a focal point? I'm actually hopeful that my daughter might be a candidate for brain surgery.
Lastly, we discussed how things have been lately, and what we're going to do about it. Our seizure control has been so poor as of late, and her myoclonics have begun to cluster regularly, to where she needs her "rescue med" (diastat) to break them. This is new for us. She also had a weird tonic seizure recently, and a month back had another unusual clonic seizure which we had to break with Diastat.
Dr. Neuro wants to wean Clobazam, and start Zonegran. He also wants us to STAY on the diet.
He's approached me about Zonegran numerous times. I just don't want to compromise her cognition or language skills (a side effect of Zonegran). But, at this point, her seizures are compromising them, so it's a catch 22. Zonegran and the Ketogenic Diet aren't exactly friends. She'd be at an extremely high risk for kidney stones, among other things.
Tonight I feel good that I was a voice for Ava today, who's speech they deem "unintelligable" .
Tuesday, September 23, 2008
Currently she's obsessed with the word "shut up". Mind you, she refuses to say her name. She refers to herself as "ME". Everyone in the family knows where she learned the dreaded phrase......listening to her beloved brother and sister in the car! Now, she blurts it out to ANYONE who is making eye contact with her! For instance, we were out to dinner Sunday night and a nice, sweet old gentlemen came up to our car (I was pulled around front to pick up the others) and stuck his head in the window to talk to Ava. Before the old feller could even get a word out Ava screams "SHUT UP, SHUT UP, SHUT UP". Now, mind you, sometimes I can get away with certain things because her language isn't always crystal clear....but....this time...there was no mistake.
If I could have crouched underneath the steering wheel, I would have! Of course, I apologized up and down, and thank God, he didn't seem offended. I'm sure her Digitrace EEG, wires coming out her head look helped with the sympathy vote.
So we've all decided to just ignore her when she says "the word". Anytime we've tried to correct her, she says it even more, even louder, and pretty much....all day!
So if any of you are in Rhode Island, walking to your car, or in the grocery store, reading off your list or talking to a friend, and you hear my little angels voice in your ear.....telling you to "shut up" just keep on walkin' *LOL*.
Don't take it personally, I give it another 2 weeks and it will be history!
Thursday, September 18, 2008
my faith - without this....I would be nothing.
laughter - laughing has always been such a big part of my life....thanks to my mother. I LOVE practical jokes and am a total prankster (when I have time). I have a quirky sense of humor, and I'm KNOWN for laughing at inappropriate times (yes...I'm a am a former childhood church laugher). In fact, NOBODY ever wants to sit next to me at church to this day, because THEY start laughing...when I'm being totally serious (especially these days *LOL*).
my family - I really just love down time with my family, especially the kids. Those random days where we're all hanging out or playing, are totally priceless. It's just....what life's all about. What did I ever do that was important before I had children!! I also look forward to those lazy days with the cousins and parents just laughing and chilling out.
Absolutely, hands down, number one fear
Not fulfilling my purpose in this life
**no explanation necessary**
failure - of any kind. This fear has held me back from many, many missed opportunities, but taught me some invaluable lessons in life.
making mistakes as a mother - the most important thing I've ever done with my life is creating (with some help...) three lives. Three unique, beautiful human beings. I know I can never be perfect, and mistakes will be made.....but I want all my children to be genuinely good, caring, intelligent, successful human beings. I want them to grow up feeling loved and safe, treated equally, and fully equipped with all the tools they will ever need to make a valuable contribution to this world.
Coffee...Coffee...Coffee.... I've tried to give it up three times...
a really good glass of red wine! .....nothing else needs to be said!
keeping it real - anyone who knows me knows this already. I'm a stickler on this subject. I absolutely cringe around people who constantly put up a front. I'm as real as they come.
Three Interesting Facts
I have a motorcycle and LOVE to ride (especially with the kids).
I'm terrified of horror movies, and can't REMEMBER the last time I watched one. (I want to say high school!)
I 've been to Africa...three times!
Tuesday, September 16, 2008
When I'm feeling sorry for myself..........because NOBODY could possibly understand what we go through. The sleepless nights, the YEARS of no sleep.
in my car.......on the phone to my husband......and as I lay down to sleep......with my 2 year old next to me because she can't sleep alone......because she might die in her sleep.....from a prolonged seizure.
The guilt....that I'm not doing enough.....that I haven't done EVERYTHING THAT COULD POSSIBLY BE DONE for my daughter, to help her live a normal life. That I'm not smart enough to understand all the in depth medical terminology tossed around me on a daily basis.
God....why couldn't you have picked a Harvard Grad. to take on this job *LOL*
Nobody mentions.......the guilt.
So I've gotten totally off track from the story I wanted to tell so here it goes:)
: and how cool would it be if the people involved in this story actually read this and freak out thinking how such a thoughtless statement.....affected someone else right down to their core:
When Ava was in the Pediatric Intensive Care Unit this past February with Flu/Pneumonia (caused by aspirating due to a 45 minute status seizure), then a case of life threatning sepsis, we ran into another family in the ICU lounge. Their son was in critical condition after suffering a bowel obstruction, and emergency surgery. Their son had Cystic Fibrosis.
We had seen each other for over two weeks...here and there....and we shared bits of information with one another while we were passing through. On our last day in PICU, after 21 days in Intensive Care, I ran into them that morning.
We exchanged e-mails (of course, I lost the teeny, tiny, piece of paper I shoved in my bag) so I was never able to contact them, although maybe they still have my e-mail:) We got to talking about friends and family, and I said "I struggle so much because nobody in my life REALLY understands what we are going through, and how hard this is....day in and day out".
He turned to me and said....so simply "I would never want any of my friends or family to ever understand what this life is like. I would never wish them to even live one day like this."
It just hit me like a brick.
This man, as his son was fighting for his life, still, never coveted the one thing I can never get off my mind. The reason I'd just rather walk around angry and bitter, because nobody understands. Whatever they say, do, or don't do (my major complaint) is just always wrong. All wrong.
So when I get in this mode, my heart takes me back to the PICU lounge. Over, and over again. Until one day..I'll finally just get it.
It will be one of those moments that I get an overwhelming peace, and know in my heart.....I can just let this go.
Monday, September 15, 2008
Both Matt and I have found that many who ask.......don't really want to hear the answer if it's anything other than "great, wonderful, better than EVER"
So warning to all....if your one of those people......... don't read any further. This won't be an easy read & won't have you feeling all warm and fuzzy at the end.
People just ask to be nice, as a polite gesture.....and I get that.....I'm guilty of it myself in my "before it happened to me" days. But quite honestly, these days, it really gets the best of me. Don't ask if you don't want to hear the truth. And when I tell you exactly how she is doing....don't cut me off, pretend you have a phone call, or say "awwwww...that's too bad" & go back to living your perfect life and never give us a thought or a prayer. Just don't ask.
Maybe I shouldn't be posting tonight............................
Ava has been having clusters of "new" seizures lately which consist of her eyes deviating upward and blinking constantly. We've had to use her rescue med (Diastat) many times these past few weeks to break these clusters. Strange enough, the myoclonics we've tried so hard to nix, have all but gone (maybe 3 or so a day) We've also noticed some absence seizures rearing. It seems as though ALL her major seizure activity has shifted to sleep time. She's been having horrible myoclonic clusters almost every night. I upped her nighttime Clobazam dose hoping it would help, but nothing.
We've had to rouse her nightly to either give her Diazapam or Lorazepam to take the edge off & help her sleep.
My poor baby. She can't even sleep anymore. The diet, however, is in question.
It will all come to our 3 day digitrace EEG we will be getting done this Thursday. I'll have a lot to think about next week. So until next week, we'll sit tight. My heart is so heavy tonight. I'm very physically exhausted from the nighttime seizures, but mostly, I'm scared.
Scared of what the EEG might say. Things have shifted seizure wise, and I don't like the way things are going. I'm scared of what is going on inside her brain, and that it could mean Ava may loose all the progress she's made. Yet, even with what I'm seeing on the outside.
I still believe.
I believe that God is in control of this situation. I believe that I can give all this pain, heartache and worry and he will turn it into peace beyond understanding. I believe that one day we will overcome this monster that has stolen our happiness, our sleep, and our precious family time that is all but a distant memory sometimes.
So to those of you who do care, and pray...for real.
We need it. Especially this week and next.
At 8 months old, Ava was diagnosed with Infantile Spasms, a rare form of epilepsy. She was treated immediately with a 4 week course of ACTH. Ava spent 6 weeks "seizure free". All of Ava's MRI's, CT's, and blood tests have been "normal".
On November 20, 2006, Ava had a grand mal seizure which could not be stopped, and she was put in a drug induced coma. We left the hospital on antiepileptic medication, and have been on medication ever since. Ava is currently diagnosed with Generalized Epilepsy.
So far we've tried the following medications: ACTH, Trileptal, Keppra, B-6, Depakote, Carnitor, and currently on the Ketogenic Diet.