A week of stressful nothings

This week we had Cheyanne's end of first term conferences and her surgical team test reviews. It's been a week let me tell you.

First School. We've fought the past 2 months with the bus. The crazy assistant is tuned to Chey's voice and has tried to make it so she cannot talk on the bus - or do anything really except read a book. Keep in mind she is on the bus for an hour and 15 min to an hour and 1/2. ONE WAY. And can not read well and hates it. Recipe for behavior issues 101! It took us forever, many meetings and finally an amendment IN her IEP to get the situation somewhat resolved. But now her teacher is discovering her retention is none. That right! None. Even though her teacher and I have done daily repetition, multiple sensory, different approaches and theory, there has been no improvement in any area.
The positive?? SHE is positive. Cheyanne is constantly trying, willing to adjust and try new things and put her whole self into whatever she is doing. And she doesn't remember doing it before or if she liked it. Sometimes something will "stick" for a day or two... But nothing but her smile is lasting forever. Isn't there a movie kinda like this? 28 first dates or something with Drew Berrymore and Adam Sandler?
The other positive?? We are STILL seizure free since the hospital in July. This is the longest stint ever. Yes! But I am secretly wetting myself in anticipation of what is building. Her history is that she will go a month or two seizure free and then BOOM! Seizures galore. Usually bigger and badder than ever before. So now that it's been 4 months (as of tomorrow Nov 12) since her 16 in one night "fun", I'm seriously scared. But I'm trying hard to knock on wood, celebrate each seizure free minute and make sure my phone is on me and my eyes on her without infringing on her play.

Today we met with the surgical Doctors. The images were super interesting. The whole front of her face was bright and they said it was due to her braces... Um she doesn't have braces... Well then it was some sort of anomaly that doesn't affect what they were after. Ok. So happy fun thought here- Cheyanne's face seriously glows. Not just her perpetual smile, but her face bones glow. Sorry but I think that's pretty cool.
Now for more "awesome" news. The tests were inconclusive. YES!! that's just what we wanted! Let's fight the insurance or end up getting stuck with an $11,000 bill that tells us nothing more! Happy Holidays! Grrrrrr. The neurosurgeon said "Almost all the abnormalities are in her right temporal lobe. But she has some spikes on the very tip top of her head and a couple in her left temporal lobe. We could go in and do the maping ( which is taking her off her meds, cutting her open and sticking the electrodes on the section of her brain and wrapping her closed and keeping her awake until she has 3 -4 seizures) and second surgery to remove the electrodes and possibly the area the seizures come from. But it's little better than a fishing expedition at this point." oh yes. Just call her Ishmael then. Or Cinderella like our fish was called..
So now they want to redo her pet scan. (this is an MRI where they inject you with glowing stuff that helps locate abnormalities in tissue.) unfortunately they have to research this first. Because if you haven't had enough seizures recently it won't read right and if you have to many it will read wrong. Can her situation POSSIBLY get any better?? Again, inconclusive. And what do they think about her learning? Could be medicine, could be that she is in a constant state of mini seizures that doesn't express themselves in ways we can see physically. But these could be affecting her emotionally, growth and retention. Well DUH. Kinda already guessed that on my own. Their guess as to why she hasn't had any seizures? We could have finally found the right dosing and/or the growth hormone shot is doing something the medical world does not know about yet. Well hot dog! Let's just put her on a poster for medical miracles & no clue what's going on with her! Awesome! So now we are waiting on PET scan info, trying to find a pediatric neuro-psychologist who doesn't charge an arm n leg, still accepts our crap-tastic insurance and doesn't have a 6 month waiting time to give her an eval. We need to redo her academic eval and school psyc evals. And when I called to get her an apt with her endocrinologist, I found out he's out on a medical leave until the end of March at least so we get to start with a new Dr. There. So super cool!! Yea!
(sigh)
What can I say? Her face bones glow- she my abnormality and I kinda like her.
But I'm still mad at the Drs.

Take a moment and hug your child(ren) today. You never know how long you'll get them. healthy and happy and trouble free.... Or mostly. ;•D


- Posted using BlogPress from my iPhone