Catching up and restarting

Hello!

It's been a few years but since changes have been plentiful and major tests are on the horizon, I'm updating the blog for Chey and I to use to keep interested parties in the loop. And since Facebook isn't protecting privacies and messenger takes audio whenever it wants, I decided this was a better venue to protect Chey and all that our family is going thru now. 

Since last post, Chey has made it 5' tall! 100 lbs! And we are super excited announce - to a 5th grade level in most subjects -higher in others and is maintaining well.... Or was until a job change moved our family a few months ago. Now her seizures have change and increased again. We've seen a little regression in learning, huge changes in behavior and some slight decline in coordination and fine motor dexterity. 

It has taken us 3 visits to different neurologists to find one who could competently take on her case. Within a month she will undergo more bloodwork, MRI, stress test EEG, 72 hour Video EEG, Neuro Psyc Evaluation and more doctor visits. 

In addition to medical test, her school district is reevaluating her for their standards in education, social and psycological. 

Poor girl is going to be so over being asked questions and going thru procedures she's going to be wishing Santa would take her instead of leaving something for her!

Our Lord has sure blessed us in this time! Even though her seizures are mass producing and morfing into something I have never seen or read about, and even though I have been so frustrated at the lack of medical professionalism in our new state, He has placed us in the hands of amazing teachers and district staff that has seen her need and inappropriate placements and sought change instead of me having to fight for it. He sent me a job that is not only being an unforeseen financial help, but a blessing of support and developing friendships that have been a support and strength to a hurting mothers heart. He helped me find a church that has leaders who remember my name and seek us out to friend Us. And group leaders who befriend my children and youth that have befriend Chey instead of running or snubbing off. He helped her to have a seizure IN the Doctors office since I couldn't find the right words to describe them. A never before happened phenominon! 

And my God has made schedule openings happen so that we could get all these much needed tests to happen in the span of a month AND before our insurance resets Jan 1 and we would have to be paying out of pocket for all of it. I am so thankful and blessed for the many gifts my Father in Heaven has bestowed upon my little family. He has brought peace and clarity to my small mind and heart. His love and guidance has surrounded me like an invisible blanket. Thank you.

I've reset everything needed to make updating this site a bit easier. I'd like to ask you to not leave judging comments but ones of peace love and hope. This sweet 16 year old gal needs to feel the love of the world. 

First medical test starts Monday! Keep prayers and thoughts aimed toward answers for controlling the episodes to bring Chey relief. 

Thanks!

WOW! Another Mile Marked!

Today we went to PCH-UofU and met with Chey's neurologist. We got her test results back from her EEG in Dec.
We'd like to announce the FIRST clear EEG in 10 years!!!! Wow! Happy dance happy dance!!
We are starting to decrease the next medication we want to go away. We are soooo excited about this major achievement- miracle- answered prayer- whatever you want to call it.
Chey is still delayed in her education (she is in 7th grade working at about a 2to3 grade level), fine & small motor (touching her thumb to each finger quickly, touching finger to nose and then out to a moving object and back to nose again & threading a bead onto some string) and in her physique.,(roughly the size of a typical 8 -9yr old) - but is making great strides in both areas. We are so grateful for these baby steps. She is still confusing her doctors who reply to most of my questions with a shrug and a "I don't know. She doesn't fit in the mold so we can try .... But I can't begin to guess the outcome"... Well at least they are honest!
I won the battle with the insurance company today over her growth hormone shots and her new ones are being over nighted to us tonight.... And - we made some really cute valentines projects that we will share with you soon!
Thanks for all your prayers and for checking in on her!

Updating

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?

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?


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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.....

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!



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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...

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