Chey has grown!! Since September 15, 2010 to Janurary 10, 2011- chey has grown 4.3 cm. For a girl who has only grown 1 inch in 3 years this is huge!!
And we are extremely happy to report no physical manifestations of seizures since July of 2010. This is the longest she has gone since she started having them. I still worry A LOT about when the next one will hit, but I am trying not to and just enjoy the lull!
As for school, she is still struggling. She's still performing reading and math skills at a 2 nd grade level. Her reading comprehension is still at a end of year kinder or beginning of 1 st grade. But she is retaining a little more each semester. Not big leaps, but a little is sooooooo much better than nothing. Or worse.
Her doctors feel her school struggles are this because she is in a constant state of seizures that do not manifest themselves physically. That is why she may appear really hyper or why she may revert to baby talk or behavior. These seizures apparently are different than "blank stare" seizures and harder to treat. Isn't that just what we wanted to hear!!
I just submitted our 2 nd appeal to have United Health Care pay for her MEG. They are still denying it saying that the facility was out of network. I just sent in a 67 page appeal with locations of machines from manufacture sights, an approval letter from them, a note from her pediatrican and from a facilitator at a MEG community for professionals in Finland - where the machines are made. Plus an 8 page printout from the UHC web site of approved radiology facilities & hospitals with the names of the people I spoke with and their "no we do not know what that even is" responses. I can not even tell you how tired I am of my phone!! And web searches!! But I have found out from 98% of the health professionals I spoke with that 3 years ago UHC used to be one of the best insurances. Now they are THE WORST!
At this point I completely agree. Not just with them not paying this bill but they have upped our premiums this year by $120, but they just took her shots off a 90 day supply to a 28 day supply with a higher co-pay, and all our other copays go up. Plus, everytime you call the help line, you get a different person with a different oppinion and no one stands by what they say. It's a joke of a company! Unfortunately for us, it's all Kohl's offers... Sad.
If you have a choice, stay AWAY from UHC!!
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Tuesday, January 11, 2011
Thursday, November 11, 2010
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
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
Thursday, October 28, 2010
Reflections... Great program. Greater mess!
Now that all the finishing up, cleaning up and refinding tables that were long buried, I'd like to share my kids projects. Well... A couple of them anyway. And I'll have to update this when I get their literature back up on my computer.
The theme was "Together We Can....
Cheyanne;
Wrote "Me and My Sister". A little poem about things she can do better when with Keriana.
I got a call yesterday and this piece has won at her school level and will advance to District competition. Of course I started crying and her smile got that much bigger... She really needed that news. She's had a rough patch lately.
Chey really wanted to sew something. But just could not work everything. -though she tried... Then she said she wished she could just make cupcakes. Wah lah!
This project won at school level as well.
Keepable cupcakes by Cheyanne. I think she could start a business!!
Chey did a visual art but I didn't get a pix of the picture. I'll post it when I get it back.
Tristin:
He went sports theme..
Together we can score a touch down.
His 3 d was "...play ball together"
Pix to come I forgot to take one. Bad mom!
Literature
Photography
Keriana
Visual Arts
3D "...help flowers grow"
Liturature:
Photography
"...plant flowers."
Yep!! I'm pretty dang proud my kids have a little bit of my love of arts nestled in them somewhere.
Now you think about it... Together we can.....????
- Posted using BlogPress from my iPhone
The theme was "Together We Can....
Cheyanne;
Wrote "Me and My Sister". A little poem about things she can do better when with Keriana.
I got a call yesterday and this piece has won at her school level and will advance to District competition. Of course I started crying and her smile got that much bigger... She really needed that news. She's had a rough patch lately.
Chey really wanted to sew something. But just could not work everything. -though she tried... Then she said she wished she could just make cupcakes. Wah lah!
This project won at school level as well.
Keepable cupcakes by Cheyanne. I think she could start a business!!
Chey did a visual art but I didn't get a pix of the picture. I'll post it when I get it back.
Tristin:
He went sports theme..
Together we can score a touch down.
His 3 d was "...play ball together"
Pix to come I forgot to take one. Bad mom!
Literature
Photography
Keriana
Visual Arts
3D "...help flowers grow"
Liturature:
Photography
"...plant flowers."
Yep!! I'm pretty dang proud my kids have a little bit of my love of arts nestled in them somewhere.
Now you think about it... Together we can.....????
- Posted using BlogPress from my iPhone
Wednesday, September 29, 2010
Update
Chey is doing GREAT on her injections. Still asking for them. Whew!
We mixed medicine again last night and I'm still remembering. And getting more comfortable.
Sad call today though. Medicaid says that Cheyanne is indeed disabled, but that Joe makes too much. Somehow that was overlooked in the past 18 phone call conversations, 20 office trips and 3 months. So they will not be covering her at all. Crap.
Job hunting begins again.
Crap.
- Posted using BlogPress from my iPhone
We mixed medicine again last night and I'm still remembering. And getting more comfortable.
Sad call today though. Medicaid says that Cheyanne is indeed disabled, but that Joe makes too much. Somehow that was overlooked in the past 18 phone call conversations, 20 office trips and 3 months. So they will not be covering her at all. Crap.
Job hunting begins again.
Crap.
- Posted using BlogPress from my iPhone
Wednesday, September 15, 2010
We have injections!
Chey and I have decided we have the BEST horror imaginations. We need to partner with some movie makers or something. But then again when you receive this...
... I think we are entitled to some horrific thinking!
But today went great. Our "lesson" was very good. Cheyanne even got to practice mixing her medicine. Though I will not let that happen for a while. ;•D
The nurse practitioner -Kristie- is just fab-o! She walked us thru it a few times and then, while I still wanted to practice and avoid it... Chey announced, " ok! I'm ready. Do I get to poke me?" ugh. So i get the machine ready and as I place the machine on her skin and it starts making it's noises Chey scrunched up her face in anticipation of the pain. My insides are flip flopping... The machine stops making noises and she peeks at me and says " when is it going to poke me?" I was dumb founded because I thought it had. And then I figured - with my super great luck- I did it wrong or broke the machine... Or both. And when I looked at Kristie she had a big smile on her face and announces " it did!" and sure enough, I pulled the machine away and there is a little medicine oozing from her arm. Whew.
And as me and my sweet girl are leaving she says " thanks kristie! Tomorrow mom I want you to poke me in my butt!" and skipps off. Only in a Dr.s office! :•D
- Posted using BlogPress from my iPhone
... I think we are entitled to some horrific thinking!
But today went great. Our "lesson" was very good. Cheyanne even got to practice mixing her medicine. Though I will not let that happen for a while. ;•D
The nurse practitioner -Kristie- is just fab-o! She walked us thru it a few times and then, while I still wanted to practice and avoid it... Chey announced, " ok! I'm ready. Do I get to poke me?" ugh. So i get the machine ready and as I place the machine on her skin and it starts making it's noises Chey scrunched up her face in anticipation of the pain. My insides are flip flopping... The machine stops making noises and she peeks at me and says " when is it going to poke me?" I was dumb founded because I thought it had. And then I figured - with my super great luck- I did it wrong or broke the machine... Or both. And when I looked at Kristie she had a big smile on her face and announces " it did!" and sure enough, I pulled the machine away and there is a little medicine oozing from her arm. Whew.
And as me and my sweet girl are leaving she says " thanks kristie! Tomorrow mom I want you to poke me in my butt!" and skipps off. Only in a Dr.s office! :•D
- Posted using BlogPress from my iPhone
Tuesday, September 7, 2010
A little quip more about MEGs
MEG/MSI - Magnetic Source Imaging provides information about the brains function not available through any other procedure.
Cells in the brain, called neurons, constantly talk to each other through a combination of tiny electric currents and chemicals, regardless of whether a person is awake or asleep. MSI/MEG, uses a technique called Magnetoencephalgraphy(Meg) to measure the activity of these neurons. By measuring small magnetic fields of the brain, the location or source of neuron activity can be measured when a person is asleep, reading, remembering a list of words or other tasks.
In combination with other imaging technologies MSI/MEG allows to enhance patient care by developing new non-invasive diagnostic technologies for identifying more accurately where seizures originate in the brain by creating a virtual 3D map of the brains activity. With a detailed description of the seizure, a history highlighting etiological factors, a neurological exam and diagnostic imaging recordings, physicians are better able to determine the best therapy and/or treatment option.
There are currently only 12 of these machines in the world.
- Posted using BlogPress from my iPhone
Cells in the brain, called neurons, constantly talk to each other through a combination of tiny electric currents and chemicals, regardless of whether a person is awake or asleep. MSI/MEG, uses a technique called Magnetoencephalgraphy(Meg) to measure the activity of these neurons. By measuring small magnetic fields of the brain, the location or source of neuron activity can be measured when a person is asleep, reading, remembering a list of words or other tasks.
In combination with other imaging technologies MSI/MEG allows to enhance patient care by developing new non-invasive diagnostic technologies for identifying more accurately where seizures originate in the brain by creating a virtual 3D map of the brains activity. With a detailed description of the seizure, a history highlighting etiological factors, a neurological exam and diagnostic imaging recordings, physicians are better able to determine the best therapy and/or treatment option.
There are currently only 12 of these machines in the world.
- Posted using BlogPress from my iPhone
MSI/MEG test complete
It's a very odd feeling to know that, after 7 years of "what do we do next", we have completed every test that can (currently) be done to narrow down her seizure activity and help us find answers on how to treat her. It's crazy to think that the end is so close and yet still so far away...
Today was definitely one out of a science fiction script. Joe and I just sat there and looked around in awe - until I started snapping pictures and he started making fun of me and my "blogging" attempts. But seriously! Maybe it was because I was - and still am - goofy on sleep deprivation, but I don't think you'd believe me if I didn't have pictures.
So our day started off just awesome with me misreading the map and taking us to the Neurosciences Center instead of the Imaging and Neuroscience Center. Located about 10 min from each other. Who knew? But we got there in time and Joe didn't blow up at me. We were so glad he was with us. Not sure how I would have done without him. And another big thanks goes to my patents for watching the others! You guys rock!
Poor Chey was doing the "imawake!myeyesareopen!" mumbling and foot dragging going into the office. They glued 5 leads on her head and then fitted her with a cap of electrodes. When the cap came off she looked like she'd been slapped around by an octopus.
They put those awesome glasses on her as they measured with a magic pen thing different points on her head.
All of this process and machine was built and developed in Finland. My brother served his mission there and we have some friends that moved back there. We spent time talking about reindeer, saunas and months of darkness & everlasting day time. It was fun to remember looking through all my brothers pictures and being able to kinda talk about things. Lame off track thoughts but as I warned I'm tired.
They explained to us that this "mapping" is done with the brains magnetic waves. And that these magnets are infinitesimally small and hard to "capture". So they built a special room fir this machine with a basically 0 magnetic atmosphere.
Nothing magnetic or metal can enter this room. Here is the double solid door and you can see into the room a little. They closed the door, pressed the magic red button....
.... And with a puff of air the door sealed. The nurse said that they have run tests and left the door open to see sensitivity and have registered the magnetic waves of a car door closing in the front of the building.
They told us to plan for 2.5 hours but we were there for 3.5. We believe she had a small seizure as well as some other abnormal waves.
They monitored by video feed on this
And then by eeg& Meg on this.
The results won't be ready for about a month as they take every second of every electrode data and plot it in a 3D computer program and make a 3D image of her brain during the scanned time. They said Something about the dr.s being able to look at it from every angle and more in-depth almost as if her brain is detached from her body and still working. At this point my imagination & sleep deprivation got the better of me and I'm picturing something like the star wars rotating image of the death star rotating around in the center of a room full of doctors and they are all discussing ways to destroy her brain... Well you get my drift.
We ended our trip with a break-unch at Ihop. I don't recall seeing Chey ever eat that much at one time. Luckily she still had so much paste in her hair we didn't need to make excuses for her shoveling table manners. The staff just stopped at her hair... And me almost face planting in my omelet. Then we somehow made it home to our beds and slept for me-4 hours and chey- 5. She got up for dinner and a shower and a little bit of homework that we forgot about and has crashed out again. I'm on my way.
And here's praying for decisive outcome that will help her...
- Posted using BlogPress from my iPhone
Today was definitely one out of a science fiction script. Joe and I just sat there and looked around in awe - until I started snapping pictures and he started making fun of me and my "blogging" attempts. But seriously! Maybe it was because I was - and still am - goofy on sleep deprivation, but I don't think you'd believe me if I didn't have pictures.
So our day started off just awesome with me misreading the map and taking us to the Neurosciences Center instead of the Imaging and Neuroscience Center. Located about 10 min from each other. Who knew? But we got there in time and Joe didn't blow up at me. We were so glad he was with us. Not sure how I would have done without him. And another big thanks goes to my patents for watching the others! You guys rock!
Poor Chey was doing the "imawake!myeyesareopen!" mumbling and foot dragging going into the office. They glued 5 leads on her head and then fitted her with a cap of electrodes. When the cap came off she looked like she'd been slapped around by an octopus.
They put those awesome glasses on her as they measured with a magic pen thing different points on her head.
All of this process and machine was built and developed in Finland. My brother served his mission there and we have some friends that moved back there. We spent time talking about reindeer, saunas and months of darkness & everlasting day time. It was fun to remember looking through all my brothers pictures and being able to kinda talk about things. Lame off track thoughts but as I warned I'm tired.
They explained to us that this "mapping" is done with the brains magnetic waves. And that these magnets are infinitesimally small and hard to "capture". So they built a special room fir this machine with a basically 0 magnetic atmosphere.
Nothing magnetic or metal can enter this room. Here is the double solid door and you can see into the room a little. They closed the door, pressed the magic red button....
.... And with a puff of air the door sealed. The nurse said that they have run tests and left the door open to see sensitivity and have registered the magnetic waves of a car door closing in the front of the building.
They told us to plan for 2.5 hours but we were there for 3.5. We believe she had a small seizure as well as some other abnormal waves.
They monitored by video feed on this
And then by eeg& Meg on this.
The results won't be ready for about a month as they take every second of every electrode data and plot it in a 3D computer program and make a 3D image of her brain during the scanned time. They said Something about the dr.s being able to look at it from every angle and more in-depth almost as if her brain is detached from her body and still working. At this point my imagination & sleep deprivation got the better of me and I'm picturing something like the star wars rotating image of the death star rotating around in the center of a room full of doctors and they are all discussing ways to destroy her brain... Well you get my drift.
We ended our trip with a break-unch at Ihop. I don't recall seeing Chey ever eat that much at one time. Luckily she still had so much paste in her hair we didn't need to make excuses for her shoveling table manners. The staff just stopped at her hair... And me almost face planting in my omelet. Then we somehow made it home to our beds and slept for me-4 hours and chey- 5. She got up for dinner and a shower and a little bit of homework that we forgot about and has crashed out again. I'm on my way.
And here's praying for decisive outcome that will help her...
- Posted using BlogPress from my iPhone
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