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


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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.....????


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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.


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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

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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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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...


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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...

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Growth hormone results

Well.... Here we go. Daily injections.

Cheyanne's body produces 1 out of the normal 10-12 hormones on her own. In the stimulus test, she produced 5.something of hormone levels. So she qualifies for hormone therapy. Yea? Without this therapy, they do not think she will reach 5' tall. With it, she should grow to be 5' to 5'2". I guess my mom will get her dream of having another family member stay shorter than her! ;•D
So we are taking another growth plate X-ray, waiting for the doctor to fill out all the paperwork that united health care requires and we wait. Then when it all gets approved I get to meet with the nurse and learn how to use the shot machine to give Chey her daily shot of hormones. The positive is that she will only need injections until her growth plates close. .... Only 2 to 2 1/2 years. Oh saweeeeeet. Well this should help me get over my fears of needles and hurting my children!


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On to recovery

We are out of the hospital again. Another test & experience under our belts. Cheyane reports that room service still "rocks" but hospitals are boring. Can't say as I disagree!
The first medicine put her almost right to sleep. Not unusual.




However it did make her blood pressure drop. We got white lips and a bp of 52/30 ( if i remember right. Lots of numbers today.) at the lowest point. She only got 2 blood draws on that before they started flushing her system. I did a whole lot of this:




The second med she did much better on. She wasn't as sleepy and her blood pressure didn't drop as low. So she watched the Last Mimzy ( best line in the movie "Golf is not a sport. It's an obsession." sooooo true!) and I did ....




Yes. Yes I was THAT bored. Chey dozed in in out. But I was monitoring vitals & blood draws so sleeping didn't happen.
The BEST news is that her blood sugar never dropped. Relief. Now we just have to monitor her fluids and make sure she has more than normal.



Her lunch meal. What more could a- soon to be- growing girl need? French fries & ranch dressingb( I wasn't fast enough for them to be included in the picture), strawberries & cantaloupe, root beer, Cheetos and an Oreo cookie shake. The lunch of champions!!
And she definitely is that today. A super champ! ( autographs available upon request..)

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Chey's hormone test

Well a lot has changed in an hour from what I thought I knew to what is actually going to happen. Hospitals and doctors SERIOUSLY need to get together and get on the same page! Way dumb!
Chey will be receiving 2 drug tries today. The results sent to her doctor and then at our appointment next week we'll get the results. One drug is in pill for ( yea!!!) the other is in liquid ( boo hiss). Then they will draw her blood every 30 min instead of every 15. ( yea!) AND I just found out that they are NOT giving her the medicines I would give her. They are stimulus that are put in medicines i would give her. The medicines today are testing in super strong doses to see which one stimulate the growth gland.
With these she runs a small risk of blood sugar drops, and her body fighting against the drugs and getting super exhausted. But it's so small a chance they don't even put a percentage on the chance. We like those odds! ;•D







Here's her room today. Definitely feel that I got gipped out of a nice sleep spot during the video EEG.. Check out THIS sleep couch!







Grrrr... Oh well. Pretty sad when you get emotional over a sleep couch in a hospital room.
The nurse had trouble finding her veins. So they brought out this big machine that glowed green and helped him to find it.







The voids the in green are her veins. So he knew where they should be and he poked, fished, and fished and fished and poked and fished and fished and after 2 minutes and tears from Chey he finally found it. And the blood came piping out. Literally. I think he collected as much as came out all over her and the bed! Had to have been the messiest draw I have seen in many years.







This is after he " cleaned". Nice.
Anyway, we've started the first med which goes for 90 minutes and a blood draw every 30 minutes. Then the next is the same but the dose is given thru iv. Then a final blood draw for blood sugar.
Such an exciting day!! We know your all jealous!
Now we are watching Hannah Montana and "enjoying" our stay. I'll post again when we leave...
.... And just as a reminder this test is to help find the right med to help her grow as well as help her in her maturing process.
Thanks for reading. Cheyanne LOVES to have messages left. She likes to hear about who cares about her and who is keeping track of her journeys. Please leave a comment so that I can read them to her.

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Test Results

Today's appointment went well. We got a lot of useful information BUT we are still no closer to "fixing" the problem.
The recorded seizures were very clear. Unfortunately, they still consider the area too big to go into and blindly operate. The seizures originate in the Parietal lobe. The yellow area in the pix below:



<---face. Back of head--->
"The parietal lobe is a lobe in the brain. It is positioned above (superior to) the occipital lobe and behind (posterior to) the frontal lobe. This area controls sensory and small motor..." Which kinda explains Cheys issues in some areas. A positive.
Where does this leave us?? Pretty much in the same spot as before the test. So here are the options they gave us.
1) The Dr.s still want the MEG imaging. I got precise clarification on this today. An MRI takes pictures of the brains "electric" waves. The MEG takes pictures of the "magnetic" waves. These are more fine tuned waves. Like the difference between a movie ( MRI) and a 3D movie (MEG). So they want to re-push United Health Care with updated test results to try to get them tocover this. If they won't...
2) We pay for the MEG. Approx. $10,000-12,000. .... Oh yes. Let's just do that because I have that right here in my purse. (very heaving sigh) I wonder if I could hold a bake sale?
3) We forgo the MEG and go in and do the "mapping". To "map" this area means that she would be put under anesthesia, open her skull, place all those electrodes from the video EEG she just went through directly on her brain, tape her up and let her sit in bed, take her off her meds and wait for her to seize again. 3-5 seizures. Again. Some people don't feel those things on their brains, others are in so much pain they are morphined till they seize and have enough seizures the drs are sure what to cut out in the surgery. --ssssaaaawwweeeeaaaaattt! Where do we sign up?? (yes I am totally sick to my stomach by this point).
4) We forget about brain surgery and we go for the VNS (Vegas nerve stimulator). This is basically a pacemaker for your major nerve. Every 3 +\- minutes an electric pulse is sent out and has been proven to help with seizure control. The success statistics: 2%-3% become seizure & medicine free. 60% have a decrease in seizure activity and are able to cut medicine needs. 25% are able to have more control but have to stay in meds. 15% it does nothing for. - lovely news! Thanks for that hope. (insert eye roll here)
5) We do nothing. When her seizures become worse again we can change medicines. 2 new ones have come out and there's about a 20% chance they might work. - Cheyanne is on her 11th medicine/ combo. Remember she's had seizures for 9 years. Yep the medicine is really successful! Whatever.
I do need to let you know the brain surgery success rate. 85% become seizure free. 10% the seizures become maybe one a year and significantly decrease in duration & intensity. 5% have little to no change. - I just LOVE statistics. They are yummy friends!! But I appreciate the honesty of my doctors. They really inform us about everything and then give us their suggestions. And I do like the fact that they sound hopeful, positive, and want in running every test to see this thing at as many angles as possible before we jump into ... Well... Her.
So what do we do? No clue. I really don't. No option is prefect. When we ask Chey she says " I just don't want to be broken anymore. Whatever it takes to make them go away." wow. What do you say to that? We try hard to make her understand that "they" may never go away... But we don't want to dash hopes of normalcy either. I think both Joe and I are slowly giving into the "this is as good as it's going to get" mentality. The mentality of big celebrations of small milestone reached and kept is where we are at. Like she can remember how to tell time on a clock but doesn't understand its passing around her. But it is truly hard to accept that your child, who you love to death but are trying to teach to be self sufficient, is never going to be able to be that...... Free.....




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Growth Hormone Stimulation Test

UHC FINALLY came through and approved the hormone replacement test for Cheyanne. Yea and boo. Yea because this means that she has the chance to grow, boo because it's another hospitalization and IV.
To bring you up to speed, Cheyanne is a 12 year old stuck in the body size of your average 8 year old. At the onset of her seizures she did not grow or gain weight for a good year. During bouts of increased seizure activity, again she did not grow or gain weight. Up until Christmas of 2009 she had grown 2 inches with no weight gain in the time that we had lived in Utah. We moved in April of 2007. Statistically normal growth is 3-4 inches per year for kids. In April of 2009, her pediatrician sent her to and endocrinologist to check and see if there were other things we were missing. The only things that showed up with all those test were a delayed bone age by 1 year. Not a huge deal. And low hormone levels. Again not a big deal we just needed to watch it closely. In November of 2009 her pediatrician started her on an allergy medicine also used to increase appetite to see if we could get her to gain weight. She weighed 50lbs. She now weighs 66 lbs and is growing a bubble butt! YEA!! She is now off that medicine!
In December 2009 we discovered her breast tissue enlarging and we redid her hormone blood work in January of 2010. It was discovered her hormones were so low they barley registered. Since then we have been fighting to get this test done. July 22 it was determined a "health care service eligible for coverage." 7 months? REALLY?? UHC needs some faster readers!

I've been doing some research and here is what I've found....
Growth Hormone Deficiency (GHD) is a medical condition in which the body does not produce enough growth hormone (GH). Growth hormone, also called somatotropin, is a polypeptide hormone which stimulates growth and cell reproduction. Growth hormone deficiency has different effects at different ages. Deficiency in adults is rare, but may feature diminished lean body mass, poor bone density, and a number of physical and psychological symptoms. Psychological symptoms include poor memory, social withdrawal, and depression, while physical symptoms may include loss of strength, stamina, and musculature. Other hormonal or glandular disorders frequently coincide with diminished growth hormone production.

GH deficiency can be congenital or acquired in childhood or adult life. It can be partial or complete. It is usually permanent, but sometimes transient. It may be an isolated deficiency or occur in association with deficiencies of other pituitary hormones.Although GH can be readily measured in a blood sample, testing for GH deficiency is constrained by the fact that levels are nearly undetectable for most of the day. This makes simple measurement of GH in a single blood sample useless for detecting deficiency. Physicians therefore use a combination of indirect and direct criteria in assessing GHD, including: Auxologic criteria (defined by body measurements), Indirect hormonal criteria (IGF levels from a single blood sample),
Direct hormonal criteria (measurement of GH in multiple blood samples to determine secretory patterns or responses to provocative testing), in particular: Subnormal frequency and amplitude of GH secretory peaks when sampled over several hours, Subnormal GH secretion in response to at least two provocative stimuli, Increased IGF1 levels after a few days of GH treatment, Response to GH treatment, Corroborative evidence of pituitary dysfunction. Severe GH deficiency in childhood additionally has the following measurable characteristics: Proportional stature well below that expected for family heights, although this characteristic may not be present in the case of familial-linked GH deficiency, Below-normal velocity of growth, Delayed physical maturation, Delayed bone age, Low levels of IGF1, IGF2, IGF binding protein 3, Increased growth velocity after a few months of GH treatment

The doctors still feel that most of her delay is due to her body shutting down some less needed functions to compensate for the overworking parts handleing the seizures. Although this could be another life long condition for her, the doctors are planning for more of a 'needed boost' during her teen maturing years.... unless of course the seizures stop.

GH deficiency can be treated by growth hormone replacement. "Provocative tests" involve giving a dose of an agent that will normally provoke a pituitary to release a burst of growth hormone. An intravenous line is established, the agent is given, and small amounts of blood are drawn at 15 minute intervals over the next hour to determine if a rise of GH was provoked. An insulin tolerance test has been shown to be reproducible, age-independent, and able to distinguish between GHD and normal adults, and so is the test of choice. GH deficiency is treated by replacing GH with daily injections under the skin or into muscle. Until 1985, growth hormone for treatment was obtained by extraction from human pituitary glands collected at autopsy. Since 1985, recombinant human growth hormone (rhGH) is a recombinant form of human GH produced by genetically engineered bacteria, manufactured by recombinant DNA technology. In both children and adults, costs of treatment in terms of money, effort, and the impact on day-to-day life, are substantial.
Children requiring treatment usually receive daily injections of growth hormone. Most pediatric endocrinologists monitor growth and adjust dose every 3–6 months and many of these visits involve blood tests and x-rays. (GREAT! more blood tests!At least they can all be done at the same time!) Treatment is usually extended as long as the child is growing, and lifelong continuation may be recommended for those most severely deficient. Nearly painless ( Really? Nearly?? children think everything is painful ... and mom fainting to the floor having to inject her? Whats that? Nearly painless my foot!) insulin syringes, pen injectors, or a needle-free delivery system reduce the discomfort. Injection sites include the biceps, thigh, buttocks, and stomach. Injection sites should be rotated daily to avoid lipoatrophy. Treatment is expensive, costing as much as $US 10,000 to 40,000 a year in the USA. (Oh that just makes my pocket book shrivel up and die. So much for vacations til the year 2150 cause you know someone is going to develop something to make us all live longer. Probably before a seizure or cancer cure! lovely.)


Now we are playing the waiting game of getting scheduled for this. They schedule a 4 hour hospital admittance so they have the opportunity to try all hormone drugs in case she doesn't respond to the first. The only down side to this is that some are available in capsule, and others require a daily shot. Can you just see me trying to give her a shot? I have to imagine a happy place just to help her through getting her 6 month blood work done. Daily shot?? Really?? gag... But what do you do when it's what your child needs for a better life? ... happy place happy place happy place....

Continuing onward and upward!

Cheyanne is doing TONS better. She still feels the need to have a nap after lunch for an hour or so and is still ready for bed about 7. Her attention span is short and her emotions are still out of whack. But thinking back to where we were a week ago - I feel so blessed to not be there!!
We have our next neurosurgical team doctors appointment on Aug 12. Then we will find out what they've learned and what our next steps are. And hopefully by then Medicaid will have accepted her and we will be that much more medically bill covered. This could get expensive. We are deciding and the drs figuring out which would be of greater benefit to her, between brain surgery and a vns device. I'll finish researching them and blog my findings about them later. Figure if I am learning I'll spread the joy.
We are also in a holding pattern for her hormones. She has had a few years where she hasn't grown or gained weight. The first no growth & weight gain was the first year she started having seizures. Since 2007 she has grown 2 inches and gained nothing. In November of 2009, her pediatrician put her on an appetite increasing medicine. We took her off of that in March of 2010 after she had gained 15 lbs! Yea! But we still haven't grown any - that I've been able to tell anyway. She is just about 2 inches taller than her 7 year old brother.
Anyway, spring of 2009 her pediatrician sent us to an endocrinologist (growth specialist dr) who ran her thru a bunch of tests. Everything was fine except her bone age was comparable to a 10 year old ( she was 11) but that was not considered abnormal. When we went back in December she had started "developing" ( of corse THAT has to be on time right?!?!) and so they put her thru another gamut of tests and found that her body is not producing enough hormones and her body is pulling what it needs from other areas.... Another reason why she might not be growing.
So since January we have been playing insurance games. She needs approximately four hours in a hospital where they inject her with different hormone supplements to see which one(s) her body will take. And test her blood to find out the combo. Luckily all this can be done thru an iv and the hormones are in pill form. They just do this testing in hospital for quicker results as well as if there is a reaction. Small chance of that but still possible. 2 weeks ago the dr submitted his 3rd request. I has to call our insurance this week to get approval on my need for physical therapy and had them check on the requests. According to their computers they have never received a request. Our insurance has done this numerous times... Anyway I got a direct fax # to the gal I talked to and had the dr resubmit a request to her. Got a call the next day that it was received and we should get an answer within 10 days. So... Waiting... It's just great.
We did get Medicaid paperwork submitted and they contacted us for proof of many things. Good sign right? Social security denied her benefits until she is 18. Nice huh! Oh well.
I just don't understand insurances. Our neuro team wanted to get chey into an MEG machine. This is like an MRI but of brain waves instead of mass. There are only 12 of these machines in the world - one of them happens to be here. But united health care considered that to be "experimental". Even after rebuttals were sent with medical journal articles and resent studies proving different were sent. But UHC WILL cover a regular EEG ( an hour study), an MRI and a 7 day hospital stay EEG study. Because that is sooooo much better and cost effective. Dumb. Just dumb. .... But at least we have insurance. I should stop whining. I just hate seeing cheyanne put thru all this when there is something else better.
And I wish they could just diagnose the problem. Kinda tired of the 9 years of " we think" ," our best guess", " let's try". But I have to keep reminding myself - and chey- that this is still a new field of study- respectively. And just like how everyone thinks and acts differently, everyones brain works differently so the drs can only guestimate. But when it's your child - all you want is solutions and happy healthy answers. Don't they get that???!!??


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Update

Sorry we haven't posted since we've been home. We fell asleep about 6pm Monday night and other than wakening a few times to eat and have potty breaks we have both slept. We woke up this morning and decided to go to the matinee movie of "Aliens in the attic". Cute movie. Then we came home and Chey slept while I mowed the backyard. She woke up and wanted to try going to the primary pioneer activity. She made it for about 20 min and was ready to come home. She slept til dinner and is now back in bed.
Cheyanne is doing lots better mentally. When she gets tired her words slur a bit and she get unsteady on her feet. She is rather clingy and her emotions are still up and down. But her headaches have eased and we haven't had a seizure since Sunday morning. Yea!!! And I'm doing lots of wood knocking. ;)
I am doing better. Would still like to sleep but have chores to get done. I am still a bit stressed and hypersensitive in waiting for another seizure. But I was sent home with "emergency seizure medicine". So that makes me a bit more comfortable.
Besides the lawn, I've gotten dishes done, one suitcase and a bag unloaded, laundry and lots of movies watched and cuddle time with Cheyanne. Something we've both needed. I have one more suitcase to unpack and one more bag but figure it can wait. No rush..... Until our other family members come back tomorrow. Then more suitcases to unpack and laundry never stays done. But they can help!



This is a pix chey wanted to share before she started her seizures. Uncle Jeff & aunt Jenn brought her these totally tubular glasses. She is addicted to cheetos. And we were trying caffeine to stimulate seizures. Yaaaaa. It worked! Huh.





This is when we were getting her leads off. Soooo excited





The best hair gel ever!!





My medusa joke was totally wasted. We still haven't gotten rid of the cement. Even after 4 showers AND mayonnaise using.... Not even kidding - it has worked the best so far.

We're free!!!

That pretty much sums it up.


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Good news...

I am super confused as to where all these posts are going to that I have written had approval and not had them show... Ah well
Even though I forgot to pull down blankets when Chey seized, the doctors are very impressed with the EEGs. They are so clear that they ask if they could take some to the university to have studied there. .... And you all know that that was our ultimate goal... ;•)
We are waiting to see how chey keeps doing but we should be released this afternoon. She is still struggling mentally, but every sleep helps and she should "return to normal" within the week.
My awesome spectacular couldn't make it without them parents have offered to keep Tristin and Keriana for a few more days so that we can readjust slowly. Now I just have to get the store to pick up French fries, cheetos, strawberries and cantaloupe and root beer. And the room service mgr told me what the secret ingredients were for their fruit dip so I'll need to get that....
Thanks again to all of you for your prayers!


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What a ride... Please stop

So chey has had a total of 15 seizures in the past 12 hours. Most of those in the past 3. She has gone into a seizure induced coma. This is caused by having so many seizures that your brain shuts as much down as it can to recover. This is typically expected and easily recovered from. She woke up enough about 1/2 hour ago to go potty and get in bed, seized again and is out. This is good as it helps her to recover


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Ok people. Stop praying! We have now had 8 seizures in 12 hours. 7 in the past 2 hours. Though they are at least 2 times the length of her " normal" medicated seizures, they are also 3 times harder. The last 7 seizures have encompassed her entire body. 6 of those have caused her lips and surrounding area to turn blue. 2 of those the lips went to white.
She is now endanger of going into a seizure induced coma.
Seizures 5&6 came within minutes of each other and were different types. More simply - they affected her body differently. 5 was whole body where 6 was left side only.
Shortly after 6 the nurse gave her the most popular drug to lessen/ stop a seizure. 10 min later, seizure 7 happened. 15 min after that. Seizure 8. She is on a constant flow of oxyagen. And the nurse is starting a drip of depakote.
What we've learned so far.
- when lots of people pray together, you can get overloaded with answers.
- cheyanne needs medicine for more than just a good introduction line ... " hi! I'm cheyanne and I could open my own pharmacy out of my house! What your name?"
- nurses are in tune with the spirit .... Or really good at guessing. Our am nurse told me to go sleep at noon yesterday because I "would need it". I woke up at 2 pm and haven't slept since. Got about 5 hours of sleep Friday...
- I have to find humor in really lame ways or I would be sitting and blowing bubbles all over myself.

Ok. Make that 9 seizures. Niiiicccceeee. Oh well. More paperwork for the doctors... And proof that I am not lying! .... And hopefully so others wont have to take this intense of a journey if they come this road.

Make that 10.


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Seizure 3. Minimum achieved

3rd seizure hit at 215 am. Never seen her have one like this. Hope I never have to again. She's asleep and I am crying. It is the worst feeling in the world to see your child go thru this and not be able to help them. You don't know if they are hurting. There is no way to communicate with her. I have to wait til the seizure stops and if she can communicate after. And I say if because sometimes she can and sometimes she can't. It terrifying and heartbreaking. Sorry. I try not to post emotionally but this neuroscience is such guess work. Almost every case is different. And funding is small and Heath care companies still consider many tests experimental. Our insurance won't cover an MEG which is basically an MRI of brain waves. So we are stuck going thru this timely, costly for them and extremely hard on Cheyanne test to see basically what the dr.'s think they could see on an MEG. Totally stupid. And it makes me mad. Which again makes me cry. And right now- I really need to be mad at something.


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2 seizures down

I am so not happy. I've sent 2 posts n they have not posted. My phone and signals are spotty in the hospital.
Anyway she has had 2 major seizures. I'll get rid of my frustration and type up details later. We are still hoping to get 1 -3 more on camera.


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Full Day 2 Down

Today was a bit better than yesterday. The withdrawl symptoms lessoned, her energy increased some. Everyone else on her "pod" was released so after noon it's been pretty quiet. And she's gotten the movie cart all to herself. The frustrating part is that a quiet area makes it hard to keep her awake. But we did that by removing her bed, bringing in an exercise mat and jumbo exercise ball. No seizure activity to report yet though. Tomorrow we will be quitting her seizure meds completely. She's already a different kid in many ways. It's interesting to watch the changes. We will see what tomorrow brings. But we are terribly frustrated. Anyway - she says it's her turn to write
Hi! I am sooooo bored. But I still love room service!! I tried a fruit plate with "sauce" today and it is so yummy I had one every time I ordered food. And mom let me talk to the person and order today. That was way cool. I got to paint more figures today. And I got to play on a mat with playdough. Mom never lefts me do that. And we had fun.
I got more guys today. This is my collection.








This is the picture I made today. And mom gave me these to paint.




They look really pretty on the window in the sun.

Michelle came to visit me - thanks Michelle!! And my grandparents and my older brother Justice. They brought me pictures to put in my book. And then sent me this cool picture.




I can't wait to get out of here. And I want to sleep. But mom says I can't. Yet.

Bye

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Starting full day 2

How do trees get on the Internet?

- they log in....

I like it when people come to visit me.


They hospital has a "kids crew" that comes to my room and plays with me. We made snow and made a butterfly


And we made a necklace and played UNO.


A really cute guy came and painted figures with me. I hope he comes back today!



I am getting bored. And it's been hard to have my body feel so weird. My nurses & techs have been fun though. I really liked when they had a water fight with me.
I really liked that grandma & grandpa came with all the kids. And I really liked the dogs. But they did kinda scare me because they were SO BIG!! But they are nice.
I slept good last night... When they finally let me sleep. And so far I am feeling better this morning. I can't wait to do more projects and see who visits me today!
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Another day down

Today was a hard day... But fun too. The super smart doctor team figured out that because Cheyanne has been on depakote for 7 years, she is actually experiencing withdrawal symptoms. She is has a constant headache and says her head "feels weird and there is drumming in it". She is shaky, emotional and extremely lethargic. Which they all agree "is normal and expected". They are still decreasing the other medicines. And we are starting to add sleep deprivation and startling her awake at different times. Which "as expected" makes her cry more. Still no seizure activity. Hoping and praying for tomorrow...or quicker if possible.
The good things- she is still LOVING room service. She got hash browns, bacon, chocolate milk, steak, French fries, and Oreo shakes. She gets to "collect" little bendy men on her am trays along with jokes. I thought that it was pretty amusing that we got this joke considering what we are hoping for...
What do you call a cow with a twitch? ..............................
........beef jerky
She got some visitors today and got to meet the sister of a kid 2 doors down. These kids are 2 of a quad set as well as the 2 who suffer from seizures. Chey was sooooo excited to meet another high functioning seizure fighter. AND they have a seizure detection dog... A New Foundland. She demonstrated her ability to ride this dog! ;)


He now randomly comes to visit chey. Which is kinda cool since he sences seizures and has to pass the nurse station to come to us. It gets us all excited when comes down. He has detected seizures up to 2 hours before one hits. So we're thinking that maybe she has had a few very small ones not recognized by me or the techs... So hopefully this is a sign of things to come..
Grandma & grandpa h came with tristin, Ana, and cousins Ella & Hannah. While they were here Liberty and her human came by for a visit.





They were very excited to see each other and all a little nervous to be in a hospital. But it brought chey lots of happiness and a little normalcy to her.
She wants to tell you about the rest tomorrow. She is super tired but wants to write about the rest of her happy times today.
Thank you everyone...

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Quick updated by Mom

The Doctor team came in this morning and have told us they want to capture 3-5 seizures and that we won't go home until that happens. Our stay may be 7 days ... Or it may be longer. We are soooo lucky! No seizures to report so far. They have inserted an iv line just incase. Chey gets so excited when they flush the line. "look mom! I am habing water without drinking it!!"
She is now completely off Depakote (yea! She's been in this for 7 years and can damage her liver as well as it may be the cause of her ADHD and growth slowness - still unknown) she's on 1/3 her normal dose of neurotin and they will be starting the decrease of her trileptal doses tonight. She's lost some color and is kinda spacy. She's complaining of a headache and that her head "feels weird"... The doctors say this is normal for coming off meds. Especially as long as Chey has been on them. We are heartbreakingly praying for seizures. Please join us.
Thank you for reading this and keeping up on her status. It's comforting to know we aren't alone! :•D


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Starting our Stay

Hi friends!
Today has been busy. My mom finally called the hospital to see if we needed to come today about 1030 am and they said yes. So we finished putting things in the car and drove to grandmas to drop Tristin, Ana and the puppies off. (thanks grandma & grandpa H. But I wish I could be there!)
Mom finished my new blanket last night.








Isn't it cool?! I love it!
We got to the hospital about 1 pm and got brought up to my room. It's 2028.


They came in and started putting the "leads" on my head.


They put a cleaner on my scalp, then put some of that white goop on the spot and stuck a lead into the goop. Then they covered the goop n lead with a gauze square and then used super glue to coat the area around the lead.


Then they used this high powered air to speed dry the super glue. They put 23 leads on my head and face and 2 on my chest. It smelled really bad. Like sticking my nose in a bottle of finger nail polish remover. And breathing it for 2 hours.


Then I have 3 other monitors hooked up to my chest too.
Anyway, then they wrapped it all up.


And they all think they are funny when they say "your hat is awesome!" or " I really like your hat!" or " your hat is the prettiest i have ever seen. Mom thought she was the funniest when she decorated it.





I don't think it's funny at all. And it really makes my head hurt. It took almost 2 hours to get al this done.
The food here is super good. I have my own menu and I get to eat it in my bed!


I've gotten French fries, chicken nuggets, popcorn, root beer,fruit and a strawberry passion smoothies. I can order steak and shrimp - not that I'd want to..
If I get a neighbor I will have to share a bathroom but other than that it's ok here.
This is the view from my room.


And then this is my moms chair/ bed.


It will fold out some how..
I've started playing with the fun basket my church group brought me!


Sister Sutter & Sister Hansen are so fun & the girls are great! Thanks again everyone!
I've been watching movies and I am very tired of being interrupted by all these dr.'s and nurses. They are all nice. But they ask the same questions and do the same tests. Boring!
Well I am sleepy so I am going to try to fall asleep watching Harriet the spy. And my head really hurts.
Til tomorrow!!.......

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