We are still seizure free!! HURRAY!
Chey continues to make progress in school. And continues to grow about 2cm a month and retains information with about 50 repetitions instead of 100! Relationships with numbers and letter sounds are starting to make sense and click. "Stranger Danger" is also clicking.
We are continuing to pray for further growth -both physically and mentally! Our insurance is deciding to not cover her Seizen Growth Hormone Shots. They are recommending a different brand and we are currently playing "the insurance game". We are praying that this works itself out and that she will not lose her progress.
Thank you for following her progress and adding to our prayers.....
Happy Holiday! And BRIGHT NEW YEAR!
Why does the fire stay a simple diameter?
Thursday, December 29, 2011
Friday, December 2, 2011
Seizures- And we are testing!
Chey hasn't had a seizure since July of 2010. Sooooo EXCITED!!
She is still delayed in school, but is retaining about 1/2 of what she is taught. Chey is earning A's and B's in her subjects that are adjusted to her 3rd grade level( remember- she is 13 & in the 7th grade....). She started this year on a First to Second grade level. We are not sure why her seizures are causing her delay- but we are so grateful for the improvement!
Today we are at university of Utah Primary Children's Medical Center. (this place TRUMPS Stanford Children Center with friendliness, compassion & remembering we are PEOPLE not NUMBERS!) Cheyanne is undergoing another sleep deprived EEG to see if there is any improvement and if we can reduce her medication even more. We could only sleep between midnight & 4 am last night. We couldn't make it til midnight so we slept from 11pm to 2 am... Oh yea!
The past few months we reduced her Depakote. She was on this for over 10 years. She had to have blood work every 3-4 months to make sure it wasn't killing her liver & other organs while it was controlling her seizures. Although I thank Depakote for the help it gave her, I am soooo relieved to have her off of this! She is a different girl and is finally successful in school... Along with the fact we don't have blood work!
Anyway- this is what they are doing today to test for SEIZURES...
Chey was "fitted" with 32 electrodes at key points in her head to monitor her brain waves and 2 heart monitors. Then warped with the most stylish head wrap... I know your all jealous!
She just LOVES sharing her pictures during these times!
Then they put her thru some tests...
-Keeping eyes gently closed for a minute.
- opening her eyes
- Closing her eyes tightly
- Then doing fast breathing blowing a pin wheel for 3 min.
I compare this to the "Don't push" breathing in Lamaze.
Then she was told to sleep for 25 min
The Nurse then had her go under a strobe light
Supposedly, these lights trigger seizures... It's never happened for us.
These are what brain waves look like:
And they video tape the entire time in case she has a seizure. That way they can see what the body does as well as her brain during a seizure...
The video is the little box.
Still no physical manifestations of seizures. Hurray!!
Hopefully the test will reveal something.....
What fun are YOU having this Friday?
- Posted using BlogPress from my iPhone
She is still delayed in school, but is retaining about 1/2 of what she is taught. Chey is earning A's and B's in her subjects that are adjusted to her 3rd grade level( remember- she is 13 & in the 7th grade....). She started this year on a First to Second grade level. We are not sure why her seizures are causing her delay- but we are so grateful for the improvement!
Today we are at university of Utah Primary Children's Medical Center. (this place TRUMPS Stanford Children Center with friendliness, compassion & remembering we are PEOPLE not NUMBERS!) Cheyanne is undergoing another sleep deprived EEG to see if there is any improvement and if we can reduce her medication even more. We could only sleep between midnight & 4 am last night. We couldn't make it til midnight so we slept from 11pm to 2 am... Oh yea!
The past few months we reduced her Depakote. She was on this for over 10 years. She had to have blood work every 3-4 months to make sure it wasn't killing her liver & other organs while it was controlling her seizures. Although I thank Depakote for the help it gave her, I am soooo relieved to have her off of this! She is a different girl and is finally successful in school... Along with the fact we don't have blood work!
Anyway- this is what they are doing today to test for SEIZURES...
Chey was "fitted" with 32 electrodes at key points in her head to monitor her brain waves and 2 heart monitors. Then warped with the most stylish head wrap... I know your all jealous!
She just LOVES sharing her pictures during these times!
Then they put her thru some tests...
-Keeping eyes gently closed for a minute.
- opening her eyes
- Closing her eyes tightly
- Then doing fast breathing blowing a pin wheel for 3 min.
I compare this to the "Don't push" breathing in Lamaze.
Then she was told to sleep for 25 min
The Nurse then had her go under a strobe light
Supposedly, these lights trigger seizures... It's never happened for us.
These are what brain waves look like:
And they video tape the entire time in case she has a seizure. That way they can see what the body does as well as her brain during a seizure...
The video is the little box.
Still no physical manifestations of seizures. Hurray!!
Hopefully the test will reveal something.....
What fun are YOU having this Friday?
- Posted using BlogPress from my iPhone
Monday, September 26, 2011
Sept & Jr. High Updates!
We are so AWESOME at updating this blog!! Sorry.... I've also been a little hesitant at doing an update cuz I don't want to jinks anything! :)
Cheyanne is doing great. Sept. 20th was her last dose of Depakote. I am AMAZED at the difference in her! She is able to remember things, socialise more closely to age level and she is understanding things easier! We don't know if it is completely the Depakote or if something has just "clicked". Either way we are super thrilled!!
She is adapting and loving Jr. High. Her teacher is pushing her to catch up to the rest of the kids in her class. She has 6 A's and 1 B+ that she has pulled up from a D (which she earned by saying "I can't!" & "It's too hard" in her reading). YEA FOR TEACHERS!
Her Saizen shots are doing well and she is doing so great with them! She decided that she wanted to do them herself and she is doing really well at it. She is growing steadily at about 2 cm a month. We have gotten the extra exciting privilege to discuss puberty and changing into womanhood.... this is extremely hard for someone to understand when you don't understand basic relationships (like 2 equals 1+1)
We are still lucky enough to be physical seizure free! There are times when I can still look at her in her eyes and can tell that something is going on in there but that it has nothing to do with the room she is standing in. She is such an amazing person and I hope that someday soon my phone will be ringing of the hook with calls from girls her age. ..... Of course I say this having NO experience with teenage girls and phones these days..... I may be retracting that statement when it happens.....
Monday, July 11, 2011
One year seizure free... Wait- WHAT!?!?!?
It is so surreal to write this! And I'm so grateful it's today and not a year ago after 16 seizures!
Chey is doing great. She's grown 2 inches since January! Huge! She still has trouble learning and retaining. She is still compulsive. BUT we have changed ADHD meds and we are slowly taking her off Depakote. (this is the most dangerous with the most side effects of her seizure control meds.) She is almost at 1/2 her previous dosage! And she has completely stumped ALL of her doctors, teachers and psychologist. It's awesome when "the minds" are at a loss...
We are so grateful for these baby steps. We are still hoping and praying for a "normal" life for her. Thanks for traveling this journey with us!
- Posted using BlogPress from my iPhone
Chey is doing great. She's grown 2 inches since January! Huge! She still has trouble learning and retaining. She is still compulsive. BUT we have changed ADHD meds and we are slowly taking her off Depakote. (this is the most dangerous with the most side effects of her seizure control meds.) She is almost at 1/2 her previous dosage! And she has completely stumped ALL of her doctors, teachers and psychologist. It's awesome when "the minds" are at a loss...
We are so grateful for these baby steps. We are still hoping and praying for a "normal" life for her. Thanks for traveling this journey with us!
- Posted using BlogPress from my iPhone
Saturday, March 19, 2011
Another Month Seizure Free!
Our prayers are still being answered for a seizure free Cheyanne! Or anyway physical manifestations of seizures. But we are soooo grateful for this respite.
She is still not maintaining much of any new educational material. Her teacher and school psyc are putting her through all the re-tests that they can and we are patiently waiting for that data to be compiled and rated.
Some more on the 'upside'... she's grown approx another cm which brings us to a lovely 5 cm since starting her growth hormone! Yea! She is also developing in other areas -which I'm not yet sure I'm thankful for! Including the attitude and mood swings. Oh yeah!
We've been talking lots about changing bodies but because her seizures come from the area that controls relationship understanding, I'm not sure she really understands what is going on. But does any pre-teen REALLY understand? This journey is going to definitely be an interesting...
- Posted using BlogPress from my iPhone
She is still not maintaining much of any new educational material. Her teacher and school psyc are putting her through all the re-tests that they can and we are patiently waiting for that data to be compiled and rated.
Some more on the 'upside'... she's grown approx another cm which brings us to a lovely 5 cm since starting her growth hormone! Yea! She is also developing in other areas -which I'm not yet sure I'm thankful for! Including the attitude and mood swings. Oh yeah!
We've been talking lots about changing bodies but because her seizures come from the area that controls relationship understanding, I'm not sure she really understands what is going on. But does any pre-teen REALLY understand? This journey is going to definitely be an interesting...
- Posted using BlogPress from my iPhone
Tuesday, January 11, 2011
Baby steps
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!!
- Posted using BlogPress from my iPhone
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!!
- Posted using BlogPress from my iPhone
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