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....
Friday, July 30, 2010
Sunday, July 18, 2010
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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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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Wednesday, July 14, 2010
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.
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.
Monday, July 12, 2010
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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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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Sunday, July 11, 2010
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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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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Saturday, July 10, 2010
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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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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Friday, July 9, 2010
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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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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- 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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Thursday, July 8, 2010
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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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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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
- Posted using BlogPress from my iPhone
Wednesday, July 7, 2010
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!!.......
- Posted using BlogPress from my mom's iPhone.
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!!.......
- Posted using BlogPress from my mom's iPhone.
Monday, July 5, 2010
Preparing and Waiting
My neuro doctors want me to redue some tests this year. We've already done a 1 hour awake & sleep EEG and an MRI a few months ago. These are pictures of me getting ready for my EEG. There were 36 wires attached to my head!
Its not very comfortable to sleep because I do have to be careful to not get tangled up and pull the wires loose.
But now we are going into the hospital for a long stay to do a video EEG. I'll be hooked up to a machine for days and can't leave the room!! I am scared. I don't like these long visits. But mom says the more info the dr.s can get the better. And it will help in the klong run. Whatever that means. So anyway I am stuck going.
Mom says she's bought me a few surprises. And she is finishing a new blanket for me to take. I hope I get a new DS game! I love my DS. And it will be great to be away from my little brother and sister. They are such pains! So yep. I am nervous. I don't remeber what hospitals are like. But mom says I get to eat in my bed!
But I don't know why they want me to have seizures. I just want them to go away. I just want to be normal.
Bye for now! :•D
Its not very comfortable to sleep because I do have to be careful to not get tangled up and pull the wires loose.
But now we are going into the hospital for a long stay to do a video EEG. I'll be hooked up to a machine for days and can't leave the room!! I am scared. I don't like these long visits. But mom says the more info the dr.s can get the better. And it will help in the klong run. Whatever that means. So anyway I am stuck going.
Mom says she's bought me a few surprises. And she is finishing a new blanket for me to take. I hope I get a new DS game! I love my DS. And it will be great to be away from my little brother and sister. They are such pains! So yep. I am nervous. I don't remeber what hospitals are like. But mom says I get to eat in my bed!
But I don't know why they want me to have seizures. I just want them to go away. I just want to be normal.
Bye for now! :•D
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