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.
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Wednesday, September 29, 2010
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.
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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.
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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
Sunday, September 5, 2010
Answered prayers
This week has been so full of happy phone calls it has just a bit overwhelmingly sped by. Wednesday we got the phone message that Medicaid had decided that Chey is indeed disabled and will cover her. Thursday we got the call that our insurance approved her for the hormone treatments and that we have been accepted by Connections For Growth and their distributor -walgreens ( not affiliated with the drug store on the corner) and that we should be getting all of that stuff next week.
Then Friday we got the absolutely AMAZING call that United Health Care actually changed their policy regarding the MEG and that Chey was approved for that. And they had an opening next Tuesday Sept 7 for her to get that done.
I can not even begin to tell you the amount of happy tears shed; or the heaviness that has been lifted. It is just amazing.
I've been writing a .... Grumpy (?) blog in my head and heart this week though. I have to admit that. And it is because of a (I'm hoping) innocent comment that was made to me. I was asked by someone if I was going to attend a school function. And when I replied that I was not - was asked why. I try hard not to lie, fib, white lie, skirt around the truth - whatever you want to call it - but I also try very hard not to complain or talk finances with anyone. 1) because it really isn't anyone business and 2) I don't want to worry anyone. Things could be so much worse for us. We have truly been blessed in so many many ways. Anyway, when I replied that with all Chey's summer tests and upcoming needs it just wasn't in our budget to go, I was confronted with "don't you have insurance? It can't cost you that much more for you. Besides your husband is a store manager." I honestly was completely dumbfounded. This person - having more children than I do ( I think! I don't know them well) just doesn't get it. I just replied " more than you'd think but definitely better than it could be" and I then lied to get out of there before my anger got the better of me.
This situation has gotten me thinking. I've come up with all sorts of financial break down blogs. Maybe I should post it. I think it would make some peoples jaws drop. If you don't have a child with a special need you just may not understand what sacrifices it means. Ignorance is not bliss. Well maybe it is to you, but to those of us going through something with your child - no matter what the % is of people afflicted with the same issue - it sucks! And you truly feel like you are alone!
I have decided against the financial break down because I think that's going a bit overboard. Maybe I'll change my mind again in the future because part of the reason we started this blog is so that people could understand more about dealing with special needs.
But I am done complaining. My heart is so full at the news this week that I am refusing to let the dark enter again. We are so lucky and blessed that Chey is as functional as she is. We don't need helmets, wheelchairs and diapers or bibs. We still have hope for an independent future for her. And maybe even a solution to end her seizure fight. This week of miracles has reminded me of that. We may not have the best of everything, we may not have huge overflowing Christmas's with lights in every window & covering our house, and we may not be able to buy something at every fundraiser or school function. (I volunteer enough to not feel guilty about not supporting the schools. Haha! ;•D Just TRY and beat my 25+ volunteer hours a week. Go on! I triple dog dare ya!)
My blessings are abundant and we have more happiness in our house than some may ever have in their lifetime. For that - I will forever be eternally grateful...
- Posted using BlogPress from my iPhone
Then Friday we got the absolutely AMAZING call that United Health Care actually changed their policy regarding the MEG and that Chey was approved for that. And they had an opening next Tuesday Sept 7 for her to get that done.
I can not even begin to tell you the amount of happy tears shed; or the heaviness that has been lifted. It is just amazing.
I've been writing a .... Grumpy (?) blog in my head and heart this week though. I have to admit that. And it is because of a (I'm hoping) innocent comment that was made to me. I was asked by someone if I was going to attend a school function. And when I replied that I was not - was asked why. I try hard not to lie, fib, white lie, skirt around the truth - whatever you want to call it - but I also try very hard not to complain or talk finances with anyone. 1) because it really isn't anyone business and 2) I don't want to worry anyone. Things could be so much worse for us. We have truly been blessed in so many many ways. Anyway, when I replied that with all Chey's summer tests and upcoming needs it just wasn't in our budget to go, I was confronted with "don't you have insurance? It can't cost you that much more for you. Besides your husband is a store manager." I honestly was completely dumbfounded. This person - having more children than I do ( I think! I don't know them well) just doesn't get it. I just replied " more than you'd think but definitely better than it could be" and I then lied to get out of there before my anger got the better of me.
This situation has gotten me thinking. I've come up with all sorts of financial break down blogs. Maybe I should post it. I think it would make some peoples jaws drop. If you don't have a child with a special need you just may not understand what sacrifices it means. Ignorance is not bliss. Well maybe it is to you, but to those of us going through something with your child - no matter what the % is of people afflicted with the same issue - it sucks! And you truly feel like you are alone!
I have decided against the financial break down because I think that's going a bit overboard. Maybe I'll change my mind again in the future because part of the reason we started this blog is so that people could understand more about dealing with special needs.
But I am done complaining. My heart is so full at the news this week that I am refusing to let the dark enter again. We are so lucky and blessed that Chey is as functional as she is. We don't need helmets, wheelchairs and diapers or bibs. We still have hope for an independent future for her. And maybe even a solution to end her seizure fight. This week of miracles has reminded me of that. We may not have the best of everything, we may not have huge overflowing Christmas's with lights in every window & covering our house, and we may not be able to buy something at every fundraiser or school function. (I volunteer enough to not feel guilty about not supporting the schools. Haha! ;•D Just TRY and beat my 25+ volunteer hours a week. Go on! I triple dog dare ya!)
My blessings are abundant and we have more happiness in our house than some may ever have in their lifetime. For that - I will forever be eternally grateful...
- Posted using BlogPress from my iPhone
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