Getting Through This Tough Time

Sophomore at Mizzou

2011-09-07T17:55:00.000-05:00

Steff has moved on to become a Sophomore at Mizzou. This year she is living in the ADPi House and so far, is loving it. Ha. We'll see, come Christmas break. LOL She made it pretty good after she started her supplements. EVEN went to Spring Break and survived w/o incident, I might add. Incident being any medical problems... LOL.. and I will follow up with, to my knowledge. She seemed spunky and fine when she got back. Oh.. to be that age again. LOL
Summer was mellow.. she worked part time, both jobs and saved her money. Yeah, she always saves her money. = ) Spends mine, saves hers. So actually not much to say, except she seems to be holding strong. She does get congested and has sinus infections on a regular basis.. other than that, I believe she's doing good. She's a sleeper.. but always has been. LOL
So.. enjoy your fall/winter.. hopefully it will be a mild one. Just checking in......
Our Life Is Good. = )

The Documentary is Going to Be Made!!!

2011-03-11T23:02:00.000-06:00

This is very good news! The total pledged continues to rise! Awareness.

So, it has been kind of a different week for me. I was considering putting the video of Steff's seizure like episodes on the Truth About Gardasil Website. Of course, only with her permission. We video taped it while she was in the hospital for the doctors to study. I have one CD,the others are still in the DRs hands. I tried to watch it a couple of times, but my computer would not recognize the format. I could only watch a few seconds before it would stop. SO, the very nice guy at work = ) changed the format for me to make it easy to upload for youtube and the website. I brought it home, watched it... and well, much to my surprise, it took me to a very dark place. I had a rough few days after I viewed it. Not sure what that is all about. We lived it for 2 years, but I can't watch it for 6 minutes? WTH?
SO, I made the decision to NOT share. First off, if I'm going to share it, I need to run it by Steff. Do I want her to find this dark place that I did? Absolutely not. I really don't know what her reaction will be, but I do know that I don't want to find out. Not right now anyway. Perhaps this summer, when the sun is shining, she is full of life and has no demands from school. Until then, it's up and out of sight.
Back to me. LOL I wonder if I didn't get to process the emotions I had while she was going through that horrible time in her life. I wonder if I just kicked into "mom" mode, trying to find answers, reasons, and logic in all that was happening. Not sure. BUT I do know that I have struggled this week after watching it. Dave says I should be happy that we are not in that place anymore. I am, and I'm really not sure why it messed with my head so much. It was sad and very hard to watch. I cried all three times I watched it. For now, I have put it up... not too sure what/when/how... but for now, it is up and out of sight. As I watched it, I thought... How could anyone EVEN think a young girl could fake something like that. WHY would a young girl fake something like that? Perhaps, at that time, that is where my brain went. To the way the Doctors treated our sick child. ... ... my brain is on overload.. we'll come back to this another day.

It's Mother Daughter Weekend for ADPi. We will be going to the Jeff City Winery tomorrow, DeJaVu tomorrow night and Upper Crust on Sunday. Big Weekend. I'll enjoy the time with Steff. ♥
I'm out.. need to get some beauty sleep. LOL Like that's gonna help!

Vaccine Court Information

2011-03-08T22:55:00.000-06:00

Yep, the documentary hit 33 thousand tonight. I DO believe it's going to happen. ♥♥ You gotta love it!

A friend sent me a link to Ustream, about Vaccine Court. Wow. I emailed it to a few of you, well okay, quite a few of you. LOL AND although it seemed to last a long time, it was very powerful. Emily Tarsell spoke of her daughter Chris, who died after the gardasil vaccine. An attorney spoke, his son is extreme autistic ~ he reminded me of myself when he said that he has learned more about vaccines & adverse effects than he ever thought was possible. Anyway, it was very enlightening. It makes you understand why the companies, like Merck, don't have to take responsibility for our kids. The fact that there are now 1 in 100 kids with autism OR the fact that 33 Vaccines are given to our kids before Kindergarten. They cannot be sued and it cannot be heard in a court until it goes through Vaccine Court. The attorney, which had experienced it, called it Kangaroo Court. It makes you STOP and realize, as negative as this may sound, it REALLY is all about the money. Who is watching out for our children?http://www.ustream.tv/recorded/13065127

Saturday March 5, 2011

2011-03-05T18:39:00.000-06:00

Saturday, March 5. All is quiet, supplements seem to be making a difference. I did get some information from the young lady I chatted with in Boonville. Interesting Info. I googled it and here is the link, if you are interested. It's about the PH balance of your body. http://www.rense.com/1.mpicons/acidalka.htm
Alkaline-Forming-Foods Diet. Pretty interesting. I need to go back into my blog and find her ph levels, I remember getting them from Dr. Mark.

Good news on the One More Girl Documentary ~ up to $31,100 ~ 36 days to go ~
goal is $37,000 So, I would say, it's on the way to becoming a reality. This, my friends, makes me very happy. ♥ It's called validation.

Friday at work I was listening to Y107 raise money for the Children's Hospital. When I turned it on, a nurse was talking about her 17 year old daughter, how her joints and muscles ached. The daughter made her own appointment, then was referred to a Rheumatoid Dr.. ... Oh, goodness, how I wanted to call and ask if she had gotten the Gardasil shot. I didn't. But it is still heavy on my mind. The young girl saw the same RA Dr. as Steffanee. Thoughts on that one?

So, after a very rough week, irrelevant to Ms. Steffanee's health, I'm hoping for a chilling evening and nice day tomorrow, since it IS my Birthday. I stopped counting, but do enjoy the pampering the day brings. LOL

Have a GREAT week and remember, if I'm not blogging, our world is good. Wish the same for everyone.

March 1, 2011

2011-03-01T21:06:00.000-06:00

Hello All. Seems like the sleeping is going better for Steffanee. It takes her a long time to get to sleep, and sometimes uses the deep breathing technique to relax that body and sleep. She told me that if she takes her new supplements early enough that she falls asleep and sleeps through the night. This is good. SO that is a step in the right direction. But the morning drink makes her very sleepy. I emailed Dr. B, his answer: work through it. Her body will adjust. I just emailed her that info today. LOL Not sure how that went over. = )
I went online last night, looking for the supplements, trying to learn what they are all for and how they work together. Yeah, I'll work on that more tonight. LOL Anyone understanding this, feel free to break it all down and email it to me. ♥
Dave goes in for surgery in the morning. Hoping all goes well there. Not up for discussion, but will share when it's over and he's better. You ALL know that nursing is NOT my calling. Should be a fun few weeks. LOL Life goes on.....
Had a bake sale at work today for that One More Girl project.. made another $50. bringing our pledge to a whopping $970 ~ fundraisers & donations. Largest donation being $50. so you KNOW we've been working those fundraisers! I am very excited about getting that documentary made. Imagine how many people will get the information through it ~ and it will be real girls with their stories. Real families that have struggled through w/o much, if any, help from the medical field. Besides the fact that it completely validates all that we have been through. Yep, I do believe it will make a BIG difference. Doubt many will be getting those vaccines after that! April 11. Deadline to raise $37,000. March 1. Looks like we will make it. ♥♥
So, I'm out. Have a good week folks.

and here is the mixture of supplements

2011-02-21T19:09:00.000-06:00

So, the rest of the weekend was good. I purchased the supplements at GNC and Clovers ~ he said I could order online, but of course I wanted to get her started ASAP.
Here is what she will be taking for 30 days, then she will check back in with Dr. B. The powder for the drinks are mixed with Orange Juice. She didn't complain much. LOL He kept saying come back in thirty days and tell me how you feel. Oh... he reminded me of myself.. just give me 30 days! But I usually said 10 days.... baby steps. I REALLY hope this helps her a LOT!

Morning drink:

tryptophan 500-1000mg
Taurine 1/3 dose (usually 1/3 teaspoon)
Ribose 1 teaspoon
Creatine monohydrate 1/3 dose (usually 1/3 teaspoon)
Arginine 2 grams
Stevia 1 scoop to sweeten the mix (scoop is very very small)
Evening Drink:
Tyrosine 500-1000mg
Ornithine 1000mg
Also: (pill form)
Primrose 1000-2000mg daily
Lipoic Acid 1000-1500mg daily
HTP 50mg at bedtime
Calcium/Magnesium 1000mg daily
Probiotic kyodophiles as directed
Fish Oil 2000-4000mg daily
Digestive enzymes as directed

an added benefit of posting these supplements ~ I've already lost the paper the DR wrote, so I'll have a back up plan here on the blog. ♥

Ah.. Wish I could say GOOD DAY....

2011-02-18T16:53:00.000-06:00

Wow. Gonna be a short post. I'm mentally, physically and emotionally exhausted. Today I made an appointment with my primary care DR to see Steffanee. He had her do blood work, keep a food journal and take her temp every morning before coming into see him. I actually was taking her to him to help her get faith back in Medical Doctors and have him refer her to an Endocrinologist. SOOO....
I take off work today, also had other appointments to make. I pick her up at Peak Physical Therapy, where she is putting in her hours shadowing Angie, the dear Therapist that helped her. So, when I pick her up, I see that glazed over look in her eyes. She gets in the car, and I can tell she doesn't feel good. She says her neck keeps locking up on her. Yes, I would say it does.. her neck is twitching ( for lack of a better word) jerking, and it looks very uncomfortable. So.. good thing we are going to the DR. right? We go, they take us back, Diane, his nurse asks Steff all the usual questions, and asks how she feels today. She answered FINE. Nothing was fine about her, but I didn't push it. Nurse left, Steff layed down, seemed to sleep a bit, but did a lot of jerking. Later said her body had electricity running through it. For a while she looked really glazed over ~ brain fog ~ after she got up, she looked much better. Watching your child (I know she's 19), struggle through something like that is very difficult. There is nothing you can do, and if you do try.. well, it seems you never do the right thing. Doesn't matter how hard you try. So, after the nap she looks better.
Dr. Bynum comes in, addresses her. I would definitely say he should have restored faith with DRS. He was very direct, understanding and compassionate with what she has been through for the last TWO years. He told us he has taken a back seat, but has been aware of what she has dealt with and how she has been doing. I believe this. I get an email every now and then from his nurse, asking about her. SO...
He handles her with baby gloves, but goes right to the questioning. Her poop habits. Her food habits. Her morning temp, Questions that have never been asked. Then he continues to say : it's her digestive system.
She probably has always had digestive (and YES, she has) problems, minor until the nasty Gardasil shot came along, then it kicked the digestive problems into high gear. She doesn't get the nutrients out of her food. So, although she is a relative good eater, her body still doesn't get what it needs. Since the shot, her immune system is fighting her body. So, he acknowledged the shot, I didn't mention it. She was good with that. We cried quite a bit. He gets it. He asked if she felt electricity going through her body, he told her he understood the bolts of electricity going through her head. Again, we cried. Soo...
He took her off all her supplements and has started new ones. She has to drink a special mix in the AM and PM, plus take quite a bit of special supplements that I just purchased at GNC and Clovers. We are heading down a new road. He also takes many of these, so, again, I think he gets it. She just came home for the weekend. We start tonight. I'll list them and go into it more later, but for now, I'm out. Except...
Family and friends that know me... you know I go shopping when I'm stressed out and cannot handle much more. Not sure why... but that's what I do. Yes, I did. Kohl's loves me today. I'll just leave it at that. ♥ Dave on the other hand, well, the packages are in the car. LOL
Take a moment to say a little prayer for Steff and all the girls suffering through these adverse effects. It is a very difficult road to travel. Sometimes I wonder if our lives will ever be the same.

One More Girl Unveils Truth behind HPV Vaccine Travesty - Care2 News Network

2011-01-12T23:25:00.000-06:00

One More Girl Unveils Truth behind HPV Vaccine Travesty - Care2 News Network

ONE MORE GIRL.....

2011-01-11T23:06:00.000-06:00

http://www.kickstarter.com/projects/1995527181/one-more-girl-documentary

A project to save lives and educate about the damage GARDASIL has done. Please watch it.

She Seems Good To Go...

2011-01-08T16:58:00.000-06:00

The Bad Night Post should have been posted on Friday. Today is Saturday, seems she is doing okay. She thinks I over react with these episodes, and well, I probably do. It was a short one, and not nearly as severe as they have been. BUT I want them to GO AWAY and never come back. I want her body to be able to handle New Years Celebration, cheating with a little gluten and well, the things most college kids do.
She came home last night late, hit the sack and slept in today. She made GF pizza and got ready for work, which I must say, she looked amazing. One would NEVER know by looking at her that she has any medical problems. So, my next idea.... I'm going to try to find a local Nutritionist and see if that would help. Dr. Amanda is helping her a lot with her back and neck, but I think she needs more... We'll see. I'm off to watch a movie and escape the real world for a bit....

A Bad night....

2011-01-08T16:52:00.001-06:00

So, I started to type on FB, then remembered how pissed she would be. LOL She's been working both jobs every single day this week. Just happens that the office job she is doing with Peds Orthopeds is moving this week, so they need her help.. it's usually just entering codes into the computer, this week it's physical labor, everyday. AND the other host at Jack's went on a 7 day Cruise.. so when she leaves the hospital, she heads to Jacks and gets home around 11, to get up and start all over again. Today is the last day for both. THANK Goodness. I've watched her wear down all week.

So here's the smiLe for you. She screamed, jerked, twisted and cried for quite a while. Dave & I heard her and came running. I ended up sleeping on her floor once it stopped. She gets up this morning and against my wishes, gets ready for work and acts like nothing happened. I make her talk about it, trying to figure out what happened. We did. I send a text to her boss (friend of mine) about her episodes. I get one back.

"She told me she just overslept. She's laughing smiling and bouncing off the walls, you would never know she had a rough night." and here I sit. Called in vacation time, no sleep and worried to death. Her life continues to go on, mine stops. Dave and I both got sick to our stomaches last night when it was happening. I'm sure he's one tired guy today too. Ugh. After the episodes, she goes off to sleep ~ we sit and worry and worry and wonder WTH??? Okay, there's your blog for the day!!

Here's Our College Girl....

2011-01-02T22:41:00.000-06:00

This is December 2010. Steff's medical problems started in Feb 2009. Well, actually before that, but the severe part started in Feb. Prior to Feb, she complained of knee pain, her joints and muscles hurting every single day. Her low back pain was horrible. Then on Feb 2, 2009, our lives were turned upside down with the non epileptic seizures. Many thanks to the Dystonia Clinic in Maryland that asked me if our girl had gotten the Gardasil shots, when I called for help. My answer was Yes, all three. It was then that it all started falling together. Today, there is much more information on the internet & FaceBook about our girls. The Gardasil Girls. One just never knows. You think you are doing the right thing, by getting them vaccinated, then it turns your world upside down. SO, she's better, she's off to college, but not w/o struggles. This has been a life changing experience for us. She is the youngest of Four. All Four received every vaccine that was recommended. Today would I do that with my babies? ABSOLUTELY NOT! I cringe when I hear a mom talk about it. How can you know if your child/baby can handle the vaccine?

THE SNOWMAN

2011-01-02T22:33:00.001-06:00

Bryce, Snowman, Steff & Josh

Phillip and his family had not arrived yet, or they would have been right in there helping to make the snowman!!

Christmas Eve 2010

It's NOW 2011...

2011-01-02T21:19:00.005-06:00

Another year gone by, hoping to see as much improvement in 2011 as we did in 2010 with Steff's health. She finished her first semester ~ not too shabby on the grades. I was expecting the worst..... LOL .. yep, that's just me. Better to be surprised, than to be disappointed. LOL No, really, I knew she was having trouble with reading and well, it's probably hard to comprehend it if you can't read it. So, I was pleasantly surprised that the grades were ALL pulled up with finals. She was very proud. She's signed up for next semester, but I don't believe she's taking as many hours. First semester she took 15 and now she's taking 12 hours. Gee. With Rushing, Homecoming and joining the Sorority, seems she has that backward. But, she made it. Her GPA is not as high as she would like, but now that she's getting the hang of how College works, hopefully she will pull it up. Type "A" personality. = )
She's still home on break, I believe she goes back around the 21st. I have enjoyed having her here. She is still working both jobs through her break, which makes me smiLe. Every single penny going into the bank. = ) Funny Girl. Funny Girl.
We had a GREAT Christmas, the snow on Christmas Eve was a GREAT thing to wake up to. The kids... the adult kids.. built an awesome snowman! If I can remember how to put pics on here, I'll attach it. By New Years Eve, he was gone, just a scarf and several sticks laying in the mud! LOL

No Posting is Good News = )

2010-12-02T21:32:00.003-06:00

LOL Yep, no posting on the blog is usually good news. Steff came home for Thanksgiving, spent a week here. Of course, she didn't just stay here.. she was on the move. LOL Seems those glasses are making a difference in the desire to read. She read quite a bit.. finished that book.. Racism without Racists. Yeah, well, I probably wouldn't want to read it either. LOL She had to do her outline for the paper on it and got a B.. yes, it does wonders to actually ReAD the book!
She seems like she is doing really well, sounds full of life and spirit again. I believe Dr. Amanda is getting her on the right path again. She gets tired, but I'm sure that part is normal. = ) I just got off the phone with her, she sounds so happy, and that my friends, makes me happy!!
So, boring as this post may be.. it's a good one! So, tomorrow is Friday.. enjoy your weekends!!

LOVING THE NEW DR

2010-11-21T21:56:00.003-06:00

We went to Dr. Amanda and was very impressed with her. I went with Steff on the first 2 visits, after that, she's on her own. AND it seems to be making a difference. With Dr. Mark, Steff was in denial about it being Gardasil, so I had to push and push to get her to do what he said. HE wanted to talk and deal with her.. nothing doing. She wasn't even SURE it was Gardasil, and YOU don't even know it is. Okay, child, I give up on that battle, now let's get better, regardless what we each feel it is, HE is making you better. UGH... that was a rough road. So, after that experience, I decided, she's 19 and will do what Dr. Amanda says if she wants to feel good. Mission accomplished. = ) She takes her meds, no begging, she drinks her carrot juice.. okay, complaining there, but I don't push! LOL ALL that she has been through, she can see what happens when she veers from the plan, or decides to have one drink of alcohol.. it tears her body down. So, long story longer, we really like the DR and we are seeing good things happen.
Steff is home for a week for Thanksgiving Break. I did take her into get her eyes checked, seems she just cannot read ~ it's too much work on her eyes. Well, guess it is!! Her vision is 20/15, but her eyes don't work together when she reads, one tries to pull away. NOPE, never noticed that. She now has reading glasses with prisms in them. She says it has made it easier to read now. BUT the book is for Sociology.. enough said. BORING!! LOL
Me? LOL I've been on a mission and will continue to be. Doesn't matter to me that my family thinks I"ve gone overboard. LOL I've been running copies of all the good articles, the flyers with the girls and stories on it, and basically any article I find informing .. and taking them to Dr and Dentist Offices, just laying them around in the waiting rooms. I hit a different OB GYN office each week. HEY! If I had found and read one of those articles, I wouldn't be blogging today. So, that is my mission. = ) INFORM, INFORM, Share & share.
I'm out, things to get done before bed.. Take Care and have a good day!!

Max II

2010-11-11T23:05:00.000-06:00

Small Update.

2010-10-27T11:51:00.003-05:00

Steff had a SMALL episode during one of her classes yesterday. = ( The professor had to call 911, per school rules. I worry about her everyday. At the start of school, we could not get her to come home, and she made a small amount of contact. Now, she wants to come home and we are in contact everyday. This tells me something is going on with her body ~ she doesn't know what it is, but feels something is wrong. She is back to sleeping a LOT. She has an appt with Tiger Chiro on Thursday.. hoping they can help. She LOVES college and the dorm! She also loves being in the sorority... but I do believe all this is taking a toll on a girl that has been through so much. Homecoming is over.... that will help, but now she will be rolling into finals.

Flagged Blood Results

2010-10-19T22:51:00.003-05:00

I'm very tired and headed to bed, but wanted to touch base for just a moment. No, Steff is not doing great. She has had a few setbacks. I was looking at the results of Steff's blood test. WOW. The things that are high surprise me ~ I think she eats relatively healthy, but her blood doesn't show it. I'm going to copy/paste her flagged results, along with the normal range. I will get back to blog soon, I hope. I did make her an appointment with the Chirop at Tiger Chiro. I am looking forward to getting back on the road to getting her better. Have a good day folks.. I'm tired, webmd wore me out tonight.
LOLWBC 11.5 ~ normal is 4.0-10.5
Cholesterol, Total 192~normal is 100-169
triglycerides 237~normal is 0-149
Thyroid, T3 uptake 21~normal is 23-35
Lymphs (Absolute) 5.1~normal is 0.7-4.5
VLDL Cholesterol Cal 47~normal is 5-40
Hemoglobin Alc 5.7~normal is 4.8-5.6
Glucose, Serum 98~ normal is 65-99
I read a lot about low thyroid. I'll paste a bit of what I found. She has almost all of these symptoms... makes you wonder.
Hypothyroidism, by contrast, stems from an underproduction of thyroid hormones. Since your body's energy production requires certain amounts of thyroid hormones, a drop in hormone production leads to lower energy levels.
Signs and Symptoms You may feel tired, weak, and/or depressed. You may have dry skin and brittle nails. You may have difficulty standing cold temperatures.You may experience memory problems or trouble thinking clearly. HELLO!!You may have heavy or irregular menstrual periods.Symptoms of hypothyroidism occur slowly over time. At first you might not notice these symptoms. See your doctor if you have symptoms like these that get worse or won't go away.
So, I made an appointment with Tiger Chiropractic for next week. Hope she can help her. Ugh. It has been a LONG road and we are still traveling........... just when you think you have it solved, something else pops up....

Good Days....

2010-06-19T21:31:00.001-05:00

So, today is June 19, and life is still good. Since we received her saliva results, Steff has been pretty much gluten free. Okay, friends/family, I'm not a dumb mom, I know she has a few cheats, so don't feel the need to tell me. LOL (FYI I DO have a friend or 2 that like to correct me) Anyway, overall, she does pretty good. She has been feeling much better & seems to have more tolerance. One evening last week, she was at a friends house, they were hungry & fixed a frozen pizza and indulged. She paid the price BIG time the next day, the day was completely wasted. She had a bad headache, stomach problems ALL day and just overall felt bad. She knew what caused it and wasn't sure it was worth it. SO, life is full of lessons. I believe one was learned ~ however, I'm very surprised it was frozen pizza (prob had a ton of additives as well), b/c she is a BIG Shakespeare Pizza fan. I wouldn't cheat with a frozen ~ I would make it worth my while on a GREAT pizza!! Kids. LOLI'm thinking that in a couple of weeks, I'll have her do the saliva test again, to see if she is making progress w/o gluten. Dr. Marks idea has always been ~heal the gut, then we will deal with the broken brain barrier. Nope, I have NOT given up on his ideas. We're still working with him, but for now are just concentrating on her gut. She still takes 3 liquids ~ B12 is one of them. I am very happy to say she seems like that "pre Gardasil" girl sometimes. I do have to make sure she eats on a regular basis ~ not counting sugar~ I know she's almost 19, but I'm the one that has to put up with her mood if her body is lacking on protein ~ I'm usually the one that gets the blunt of it. We argue over stupid stuff, then I realize she prob needs food, but we are usually WAY into an arguement over "nothing" before my light bulb goes on. I'm getting more tuned in!!So, she graduated and that was a great day. Yep, I shed a couple of tears, but I am SO happy for her. She is attending Mizzou in the Fall, staying in the dorms. I pray that all goes well. Her major is pediatric physical therapy at this point. We'll see. She took most of her basic college courses her Junior & Senior year for dual credits, so she is well on her way. I just hope she gets tuned into her body so all goes well. = )Me? I'm doing good. I'm hardly on the computer anymore, I will say that when I am, I still read stories and posts from moms with sick girls. It will always be in my heart to share and help with our experience all I can. I did purchase shirts from the TruthaboutGardasil.org ~ but I think I did it from Facebook, not sure. Anyway, I bought 3 nice T's with the website in cut out letters on the front of the shirt ~ yep, people ask questions. The shirt itself is nice, small words with a big message.I gave one of her friends one as well, she's going off to college in another city. She's been a big support through all of this. So, back to me. LOL I'm good, we're good and actually, it feels like life is good. I still pray for our girl, but she seems to be doing quite well. It is the small accomplishments in life that make me happy. I don't worry when she drives anymore, I feel okay leaving her at home alone again, I can sleep through the night w/o coming upstairs a couple of times through the night to make sure she's breathing and okay. So, yeah, I pretty much would say, life is good. = ) So, unless things go south, I probably won't feel the need to vent ~ LOL That is how this blog thing got started ~ me letting my feelings out, along with getting information out to friends/family without being on the phone all night. It has helped me more than anyone will ever know ~ this blogging thing. Plus the contacts I have made through moms reading it. So, many thanks to all of you that have helped us through this tough time in our lives... here's to hoping that Life is Good every day.. for all of us!!

Oprah Address for show suggestions!!!!

2010-04-10T12:36:00.002-05:00

https://www.oprah.com/ownshow/plug_form.html?plug_id=3749665

This is a connection to Oprah's suggestion page for stories for her final year of shows. I am thinking if all Gardasil Moms or Girls write a suggestion from their hearts.. perhaps it will happen. Please take a moment to share with family/friends, so we can all pour our hearts out and make a difference. Thanks.

Blast from the Past

2010-02-18T17:18:00.002-06:00

Okay, so things were going fine. On Wednesday, Steff had an episode at school. It wasn't just the tremors that we have become accustomed to, but more intense. I know she gets tired of doing this medical plan, with all the supplements and the protein drink every night. Who wouldn't?BUT after today, it proves completely that she needs to stay on it.

Leslie (comment on last post). Thank you very much. I am glad she's better, but we still have a long way to go. She has come a long way from Feb 2, 2009, and things are much better than they were then, but things are NOT like they were prior Gardasil. Her memory & thought process is not the same. So, when I say "life is good" don't think we have this all wrapped up, because we know that we still have a long way to go. I do think it is important to recognize that her health has come a long way, she's happier and life is just much easier.
So, everyone, know that it isn't over yet. We are still fighting for her health and doing the best we can. A little set back on Wednesday, that's all.

ONE year ago today.. this blog

2010-02-02T23:15:00.002-06:00

ONE year ago today, our journey down this medical road started. I created this blog in the middle of Feb to keep family and friends posted. Today, I'm happy to say, Steff is doing much better. The episodes have calmed down to "tremors" instead of the violent seizure like episodes.
Her body lets her sleep through the night and overall, she has much improved throughout the year. Wasn't sure we would make it ~ stress and all ~ but we have. Here's to hoping and praying that next year at this time, she's off to college doing very well.
So, Life is Good in the Richardson household. = )
Positive thoughts bring positive things.......

Time to Move on...

2010-01-12T21:07:00.002-06:00

We are progressing quite well with Dr. Mark Flannery. Steff is doing good and seems to be improving. It's still a day by day ordeal, but feel it's time to move on. So, the blogging will be finished for a while. I might check in a on monthly basis, just to document what is happening on Steff's road to recovery. So until then, we're out! and Life is Good.

Back to the Schedule

2010-01-03T20:45:00.001-06:00

Holidays are over, back to the schedule, all the way around. Steff is tolerating the chelation very well and things are good. Hoping 2010 is a much better year for us!! = )

Good News!!!

2009-12-27T08:47:00.002-06:00

I have good news all the way around. Steff has had a good holiday, health wise. AND she was accepted at Missouri State University in Springfield MO. She was SOOO excited. So, we will have to make a decision ~ University of Missouri, Columbia OR Missouri State. If her health continues to improve, I'm fine with either. I would like to see her get out and experience life away from home. That's my vote. Time will tell.
We had a GREAT Christmas. Hope everyone else did as well.

Saturday All is good

2009-12-19T20:07:00.002-06:00

So far, the detox is going smoothly. This is good.
No problems to report.

spoke with Dr. Mark

2009-12-16T00:05:00.002-06:00

Spoke with Dr. Mark tonight. Learned the importance of the diet, he stressed what "not sticking" to the diet can do.
Continue with Detox, call and report to him on Thursday PM.
If all is well on Thursday, go to both supplement plans for 2 weeks, minus the MulitMin, then just the supplements from plan one.
Ordered 2 jugs of the Clearvite. Tonight is a detox night~ every other night.

HA! STill Saturday

2009-12-12T19:36:00.003-06:00

I was reading on the Gardasil Group on Yahoo. I came across an email from a mom from Missouri. Her daughter is listed in that project we did, with all the girls and their stories. If you are interested in it, let me know and I will get you a copy. It's long, but makes a very big statement. It's sad, to say the least. Anyway, Cassie was not doing too well, her mom has been off the group for the time I've been on. I knew Cassie was seen at the University here in Columbia. SO, her mom gets on the group and writes this email. I'm going to copy and paste it. I know I should prob ask her permission, BUT it makes a big statement about Dr. Mark, which I am SO glad. It's like, you feel you are making the right choice, you see her getting better, but is it that time has passed, or is he making a difference? Here's my answer. Funny that I ran across it today. ~ just the same ~ I'm sharing!!!

Hello to all! Many of you do not know us, it has been awhile since I have participated in the group; however, my daughter is a Gardasil survivor and I wanted to share with you how she has survived. I have noticed that many of you are still struggling with where to go for help, I am here to tell you help is available and as far as I am concerned it is the only chance your daughter has to improve and beat this horrible vaccine. God Bless all of you and know you are not alone there is HELP! Kim S.

There are not enough words for me to be able to fully express my gratitude to Dr. Mark Flannery. It is because of him and the grace of God that I still have my daughter with me today.
Cassie started experiencing side effect from the Gardasil vaccine immediately after the first injection, but because we were told the reaction was completely unrelated to Gardasil she continued with all three shots. It was after the third and final one that she became seriously ill. Cassie was hospitalized, her symptoms consisted of severe abdomen pain, nausea, vomiting, severe headaches with light and sound sensitivity, and extreme nose bleeds. After being in the hospital for 7 weeks the doctors diagnosed Cassie with pancreatitis, polycystic ovian syndrome, and severe intestinal swelling; she was placed on TPN and Lipids (IV nutrition) and had surgery to remove the cysts. Her condition continued to worsen and the doctors had no idea why or how to further help her; Cassie was then flown to yet another hospital. After three more weeks Cassie started having seizures as well as other neurological problems and still no answers. Still on the feeding tube with 5 different IV nausea medications, as well as IV pain medicine we were sent home with Home Health to continue the care of Cassie. Less than one month later Cassie lost feeling in her lower extremities and started experiencing heart problems. Cassie went back into the hospital for another three weeks and then to a rehab facility where Cassie started the process of walking again.
It was at this point when God brought Dr. Flannery into our lives. Cassie spent over 13 weeks in the hospital and another 4 in a rehab facility and yet she was not getting better, she was continuing to get worse. Every week was another symptom and the only thing the medical profession knew to do was symptomatic treatment and that was not helping. Dr. Flannery took over Cassie’s care, treating the dysfunction of her illness rather than the symptoms and with just a few short weeks Cassie began to stabilize. I was very uncertain of Dr. Marks approach; however, we had given western medicine more than enough time to help our daughter and they failed us miserably.
I know had it not been for God leading Dr. Mark Flannery, my daughter Cassie would not be with us today. It has now been a year and Cassie is eating on her own (following a strict diet), walking, and only taking supplement recommended by Dr. Mark. Cassie still has some healing to do, but we are confident with the help of Dr. Mark she will be 100% soon.

Saturday and so far, life is good.

2009-12-12T10:18:00.003-06:00

Steff started on a new plan on Friday. He lowered her supplements, plus we tried to start back on the chelation last night. So far, all is well. We started it earlier and it caused her to have more seizures, so hopefully, her liver is cleansed and this time it works. She is SO ready to done with this. Dr. Mark sent me an email with his cell phone and told me to keep in touch if things don't go as planned. Although he is in CA, he is more in touch than any local DR we have had. I do have faith that we will get there, it's just going to take time. I'm hoping the chelation goes better this time and we get a lot of the toxins out, the ones that seem to be causing the most trouble for her.

Rough Day

2009-12-07T21:04:00.004-06:00

I spoke with Dr. Mark today, he is changing her meds up for this weekend, while she's home. He also said it is MUCH easier with the 14-15 year olds. I'm sure!!
SO, here's the deal. Although I say she is 10 days episode free, that does not necessarily mean life is good for her. She is still dealing with blurry eyes, super sonic ears and overall not feeling well. She did have an episode today at school, so we are back to 0 days w/o and episode.

2009-12-06T20:16:00.003-06:00

Two very tired girls on the way home from their
Senior Trip to St. Louis. LOL
It was titled "Best Friends" also could have been
titled "Sisters"

TodAy Is SUnDay....

2009-12-06T20:02:00.003-06:00

Steff hasn't had an episode since Thanksgiving night, that I'm aware of. She has been tired all week and the Senior Trip to St. Louis wore her out. She worked Saturday 1-5, and ran with us all day today. She & Dave are kicking it together in the living room now. Chilled. SO, we are 10 days w/o an episode. She is tired, her eyes & ears mess with her, but she's hanging in there. Her ears are SUPER sensitive... she hears everything. ... super sonic hearing.

ALL sMilEs here.....kind of....

2009-12-03T23:32:00.004-06:00

She is doing much better on drinking her protein drink, at least we don't fight about it every single time! She still gags and carries on, but who cares as long as it goes into her body. I believe she will be taking these supplements (or some kind) for about six months, then he will recheck her blood and urine. I THINK that's how it works. She takes quite a few with breakfast, lunch & dinner.

Sunday Evening......

2009-11-29T22:18:00.003-06:00

What an enjoyable FOUR days! : ) We were 22 days without episodes, until Thanksgiving night. I was surprised, but realizing how much "off the diet" food she ate, I shouldn't have been. Back on the Dr. Mark plan today.

Pictures!!

2009-11-28T23:31:00.005-06:00

Steff with Coach Crane, which is also the school nurse that takes care of her!!

Coach Crane with the Fabulous FIVE!

Yep! She's cool...

Kelsey W, Kristi M, Addie, Coach Crane, Courtney, Steffanee, Alexa, & Jordan.
Seven Senior Cheerleaders ~

A few shots from the Sports Awards Ceremony!

Tuesday~All is STILL good.

2009-11-24T21:52:00.004-06:00

Ah. Life is Good. We are on day TWENTY without any episodes, to my knowledge. Everything here is running smooth. Steff was asleep by 9 tonight, should be easy for her to get up for that 1/2 day tomorrow. : )
I received an email from a mom, with a link that expains "leaky gut" ~ it was pretty interesting to me. It seems that that is where the brain fog comes from~ I"ll post the link, if you are interested, read it. It's kind of long, but worth the read. Makes sense.
http://www.drkaslow.com/html/leaky_gut.html I'm going to send her an email to see if she has read anything about the broken brain barrier.

Have a Happy Thanksgiving Everyone ~ Enjoy your families & the feasting!! I'm out.

A good Weekend for Steff

2009-11-22T21:21:00.004-06:00

Glad to keep typing that it's another good day. Steff had a good weekend.
These Gardasil Shots have taught me a VERY expensive & stressful lesson. ~ Who knew MY girl would EVER have a reaction to something like this? She did, it's getting better, but not with out completely STRESSING everyone out. It's like, how can you know the choices you make today will make such big changes in your life? I cringed when I heard a mom talking about how well her baby did getting two vaccines. Never EVER thought about it before. Mine all handled all of the vaccines, until Gardasil. I'm not angry, I just wonder WHY a lot. Why would she have a reaction to this one and not all the others? Anyway, just thinking...... wondering...... probably too much.

ALL sMiLes today

2009-11-20T18:58:00.002-06:00

What I thought was going to be a terrible day ~ was a good day, so far. When I got home from running errands, Steff was all smiles, and looked pretty cute from her day at school. I was surprised. I waited all day for a phone call. Glad I didn't get it!! She was up at Midnight, telling me she couldn't sleep and how bad she felt ~ her body was shaking inside, her head hurt and behind her eyes was really hurting. That always scares me. She finally fell asleep, but didn't sleep sound at all. I was surprised she got up and made it to school, but glad she did. She seemed like she had a good day. She's off to the movies tonight : ) ~ hope they get in to see the show they were hoping to see. New Moon I think, something from Twilight. LOL
I did get the FMLA leave resolved, but not without MUCH frustration and tears. I'm not a crybaby ~ Trust me ~ BUT I was getting SOOO frustrated and angry with them. Like, hello, it is a FEDERAL law. Besides, I really have enough stuff to worry about w/o you stressing me out. Okay, enough said, it's fixed, I don't have any time against me this year. I was at the final warning and it runs for 2 years or something like that. Anyway, I'm happy, that's all that matters to me. LOL Really, I just wanted to make sure I didn't lose my job while taking care of a sick daughter. That's all. So, it's done.
I'm out, Steff's gone, Dave's in the living room, think we might watch a movie together..... : )
Tomorrow!! MAYBE.........

No Episodes/LOTS of Yuck!!

2009-11-18T20:35:00.003-06:00

I had to take Steff back to the DR today. She went to school yesterday for 2 hours. Ear infection.

Rainy Monday

2009-11-16T21:08:00.003-06:00

Steff didn't make it to school today. She had a very sore throat yesterday and slept most of the day. This morning she woke up with a worse sore throat and said it felt like a ton of bricks were laying on her chest. With everything going on with her, of course I took her in to see the DR. He put her on a Z pack. Yeah, I know, probably not the best idea, but what can I do? She slept all day again today. Hopefully she will be feeling good enough to go tomorrow.

: )

2009-11-15T23:27:00.001-06:00

: ) : ) : ) : ) And yet another good day. Hopefully, soon, we won't remember what bad days were. Have a GREAT week everyone!!

Good days....keep on coming....

2009-11-14T18:04:00.003-06:00

Ahhhh. It almost feels normal around here. Steff is back to her old SASSY self ~ what was I thinking???? JJ

We're chilling tonight ~ just enjoying the freedom that Steff is starting to have. The more she gets, the more we get!! ha. Life is good.

Friday Again....: )

2009-11-14T00:23:00.003-06:00

It's Friday and that kid of ours made it an entire week at school. : ) She seem so much better, it's unbelievable. Tonight was the awards banquet, our last one forever. They took lots of pix. One of the cheer moms made an awesome CD for the cheerleaders. Something to cherish FOREVER!! Great music too. I'm totally impressed with it. A really great gift for our Seniors.
Here's to a great weekend!! Hope you all have one as well.

Good Days/No Post : )

2009-11-11T20:42:00.002-06:00

WOW! It's Wednesday and it has been smooth sailing. I am SOOO glad. She's feisty again ~ good sign that she is feeling better. So, not much to post! She is such a ditz sometimes. Yesterday she called me saying that the new supplements were making her feel strange and spacey. Okay, being all concerned, I called DR. Mark TWO times ~ he changed her plan all around, thinking her system is really more fragile than he realized. WELL! The ditz had taken her morning pills AND her evening pills. She says I put all them in the AM box of the pill container. I SAY, well, let's see, if I couldn't close the lid on 11 pills, b/c it was overflowing, how in the heck could I get 21 pills in there? Enough said. DITZ. So, I had to email Dr. Mark to let him know she was okay, luckily, and that we are back to plan one. Yeah, that was my fault. Seems like every single thing has to be my fault. Good thing I can handle it. LOL My bad.
Dr. information. We are now cleansing her liver. There are two phases, but she takes the same meds for 30 days. Phase one pulls the toxins into her system (I guess out of her tissues??) and Phase two breaks them down so she can release them from her body (sweat, urine, bowels). IF phase 1 gets too far ahead of phase 2, she could have some problems. He has only seen this happen a couple of times, but we need to be aware. I'm thinking, if it's going to happen ~ it will happen to her. SO, 2 days in and no problems. I hope this is a good sign. He said we would know by Friday. Casey, Sara, there's your heads up. LOL
Bracelets, WOW! They are moving right on out the door. Thanks so much for all the support. It makes me smile to see people wearing them. : ) A girl at work is selling the heck out of them too, I really didn"t think of that. I thought Kathy and a few of my friends. Now who's the ditz??? LOL In case you are wondering, No, insurance will not cover 1 cent of the CA Dr. We are using supplements/vitamins/minerals. They only cover DRUGS. I know!! You would think it would be better to go natural and save them money, but oh well. She's better and that is all that matters!! AHHH LIFE IS GOOD. I'm out ~ and if I'm not posting...... .. that means life is still good. Frustration is when I blog. YEP> and today, I'm feeling good. Out!!

A GOOD Monday...

2009-11-09T18:48:00.004-06:00

Gee, Steff made it through school ALL day today ~ still standing. First Monday in while. Wonder if it had anything to do with coming home to sleep instead of staying at someones house. Gee, I wonder. Hope it's okay with you, Lawson, I'm pasting your email, it made me smile. This email is from her ART teacher (she keeps me informed.) : )
Robin, You weren't kidding in your blog that flashes of the "old Steff" are coming back. She was so bubbly today, smiley and her laugh...oh I love her laugh. I just saw her 8th hour, and gave her a high five. She said it's her first Monday in a long time she has made it through the whole day:) YEAH! SO happy for her.Take care and let me know when these bracelets come in:)Lawson
So, I'm not the only one that sees it. This is good news. We got her new box of supplements today, wow. Not sure how that's going to work out, but we'll figure it out. LOL

GREAT day!!

2009-11-08T21:18:00.003-06:00

She feels like this is taking forever to get her better. I SAY~~~~ I can see a difference already. No, she isn't completely healed, but I am seeing more personality than I've seen in a while. She isn't asleep on the couch most of the day, she's moving around. Her laugh is back. Yes, we have to fight about her staying home, but oh well, life goes on. I KEEP telling her, just give us a month (us being Dr. Mark, Dave & I) and you will see a difference. A month of proper sleep, strict diet, supplements and whatever the DR orders. ONE month compared to the NINE we've been through ~ ONE month is nothing. I have faith we are on the right path, I really do.

Smooth Sailing~~~ YESSSSSSSSSSSSSSS!!!!!!!

2009-11-08T14:27:00.003-06:00

It's been fairly smooth sailing around here. Steff did have to head to the nurses office on Friday. She had a few twitches (which she says hurt just as bad as the jerking), took an hour nap, then headed back out.

Yes, this is much better.

2009-11-06T05:42:00.002-06:00

TWO peaceful nights, and a GREAT Thursday. Hoping for a GREAT Friday. Steff sent me a text at 8:30 am on Thursday at work. I cringed, opened it and read it. I actually laughed out loud. The text was "MY GIRL"!!!! I knew at that point that she would have a good day. : ) I shared at work ~ they also LOL ~ It was SO the Steff that felt good!! So, let's hope & pray for another good day! I'm running late, but had to share. THIS IS A positive post!!
About the FMLA ~ I"ll get back w/that.
About the video I found about chelation and the Cheerleader---WOW!!! I'll also post that.
http://askrsb.podbean.com/2009/11/04/exclusive-flu-shot-victim-desiree-jennings-cured-of-untreatable-neurological-disorder/ and it was still in my paste link. : ) Amazing. This is what Dr. Mark does, but slower, not in an IV, but in meds. I'm out, can't be late........have a good day!!
It's FRIDAY!!!!!!!!!!!!!!!!!!

We made it ~ on her time....

2009-11-04T22:16:00.003-06:00

We both made it to work/school today ~ on her time. I work 6:30-3:30, I showed up to work at 1:45. NICE. I plan on doing four hours make up time, IF Dave comes home tomorrow night. I know people don't understand how some times I can leave her and sometimes I can't. It's about the episodes. When she has one, I won't leave her by herself, b/c I'm afraid she'll have another one ~ and be by herself. What a horrible feeling that would be. When she's up and moving, I can tell if it's okay to leave her. It's our life and we get it. Might seem odd to others, but we do the best we can. Not defending us, just stating the facts. I would trade my life for theirs in a heart beat! Enough of that....
So, Dr. Mark called me back today. We are stopping the supplements, except the NeuroFlam. He thinks she has too many toxins floating around in her body at this point. He has decided to go ahead and do the thirty day cleanse for her liver b/f we do the chelation. He had said we would have to tweek it as we go. When the Brain barrier is broken, it's a tricky fix. SO, we'lll stop the supp. and start on the new ones when they arrive. Which of course, means I will be buying yet more supplements. Whatever it takes.... .... and I'm supposed to email him on Friday about how she is doing w/o the supplements.
I had a pretty rough day, even though I worked less than 1/2 day. I'm trying to get the paperwork done for an intermittant Family Leave so I can take Steff to her DR appointments or stay with her on a bad day, w/o it counting against my attendence. It obviously is NOT as easy at my job as it is at others. I started trying to do this in June, didn't happen. So, now I'm trying it again. Seems the employer has the choice whether to honor the leave or not. Seems to me that MOST employers would say No. So, what is the point of it being a Federal law? I don't understand ......... instead of doing this, they are telling me to take a 2 month Stress leave. Yeah, well, that would be nice, but how the heck am I supposed to pay the CA Dr. if I'm not working? Besides, as odd as it may seem, I do better at work while she's in school.
It's getting late> I'm out. Hope tonight and tomorrow are better than the last. : )

UGH!!

2009-11-04T07:41:00.002-06:00

Steff had a real mellow day all day yesterday. She actually slept quite a bit, ate her protein every two hours. I figured things would be good. NOPE! Twenty minutes into her sleep last night, here we go again. This time Dave gave her 1/2 a pill ~ 12 minutes later, her body started to relax, a couple more twitches, which are much better than thrashes, and it was over. HOWEVER, I cannot get her to budge this morning. I'm showered, ready to head out, she won't budge. I will not leave her here by herself, I just can't. Twenty more minutes, and I"ll call her again. NOT that 20 is a magic number, LOL, but it seems logical. I figured that yesterday was from the weekend. Maybe not. I have a call into Dr. Mark, perhaps we need to adjust her supplements. I hope to hear from him around 11 ~ 9 his time.
I made white chili last night, we all liked it. LOTS of protein there!! That is what she wanted for her lunch today as well. Aah, another recipe, another flavor. THAT was good. Turkey, Chicken, Fish, Then repeat. That's pretty much it. : ) I'm planning to saute some fresh organic spinach tonight, with mushrooms. Probably ground turkey as well. LOL I'm out.......... to try to get her moving. Have a good day mate!!!

If you are reading this... you know me too well. LOL

2009-11-03T12:21:00.002-06:00

Okay. If you are reading this, you obviously know me TOO well. Give me a difficult day and I need to vent. Vent, scream, cry, not sure, but I'm back. Last night was a very tough night. A VERY tough night. I NOW understand why her knee continues to hurt 24/7. It went into positions that I have never witnessed a knee going into. ugh. It was bad. Hard to understand how all this happens. I do see a pattern, possibly. Last Monday it happened at school, with a trip to the ER. It happened last night after she fell asleep, later than I requested. SO, that said, I believe next weekend will be a very slow one. There is a party on Friday, but she will be coming home at a decent time to sleep in her own bed. Saturday night, she has already said she's staying home. We all know that commitment will change if a better offer comes along. BUT I'm on it. I would rather fight with her about the weekend than fight with her little body on the bed while she is screaming in pain. I'm the mom, bottom line. Dave & I are together on this, which is very important. The DR at the ER gave her a prescription to calm her muscles down when she is having an episode. The Valium the Ambulance driver gave her worked like magic, I could feel her muscles start to release. I shared that with the ER Dr, he gave her something similar. We prob should give her 1/2 instead of the whole pill, b/c she is STILL sleeping. I've checked on her, she's okay, but knocked out. I have been waking her to eat a cracker with Almond butter on it. Protein every two hours to nourish the brain. I am SO on that.
Okay, it's now 1:10 and the girl is awake, not up, but awake. She's sore. I am SO sure!! I prob need to go find her some kind of protein for lunch and serve it up with rice. LOL Peace out, I'm out, and yep, I'll prob be back. I hate to leave people wondering about her, maybe that's it. : )
OR maybe we are still in need of LOTS of prayers. There's no maybe about that one!!
Have a good day folks and say a prayer for our girl.

Still Friday.. IT'SNOTFRIDAY, it's Thursday

2009-10-29T17:07:00.003-05:00

Monday, ambulance ride to University.
Tuesday, stayed home from school & slept all day.
Wednesday, no episodes.
Thursday, no episodes.
Say a BIG prayer that tomorrow during her field trip for STUCO that she again does not have any episodes. I will be there, just in case. I have gotten a new book to read ~ Robin time, among 950 high schoolers. Yeah, I know you are jealous. Esp b/c it's in Salisbury MO. WHAT??
I need to clear a couple of things up, per Steff. When I blog that Steff has had a good day, I should have been saying, no episodes. The little rat broke down last night and straightened me out. And that's okay. We all need to understand where she is coming from and what is going on with her. First off, she does not have good days. Her body hurts and aches every single day. She feels like her brain cannot get her body to respond like it wants. She feels like things around her are moving slow. Every day she wakes up, she wonders if she will be able to see good, she wonders if she will make it through the day. Everyday she tries to put on a smile and force through it. She said last night that no one will want to be around her if she complains all the time about how bad she feels. She is a very smart girl. She knows how to be strong. Sometimes this is a good trait, sometimes it is a bad trait. Please do not approach her and ask her in a condescending voice how she is today. She does not know, the day has just began. You can easily tell her good morning and prob will get a better response. I'm not being mean, neither is she, but I think her little patience wears thin. She is dealing with more than you or I will ever know. I have hesitated to say this, but, she is a sick girl. You cannot tell by looking at her and she puts on a smile and tries to push through the day, but on the inside, she is a sick girl. Besides all the toxins in her bod, her system is totally out of whack. On top of all that, I started weening her off the anti anxiety meds, this multiplies problems. I made the decision today to ween her back on it. I worry about her getting too depressed with everything going on.
SO, don't hold me to it, but I think today will be my last post for at least 30 days. The CA DR said give these meds 30 days, work with the program we discussed and you will see a difference, I SO hope he is correct. As a matter of fact, I have faith that it will work. I'm in it for 30 days. SO, on day 31, I plan to get back on this site and be excited that her pain level has decreased, her episodes have stopped, and she is a happier girl. BUT for now, my focus is on getting back into life. I think I have neglected our boys and the grandkids for 9 months. Steff informed me last night that our house is not a happy house anymore. After processing that, I would say she's correct. Today, life begins again. We have a plan in place, in thirty days, we will know if that's the right plan for her. Until then, we will live like we used to, as a family. Not a mom on the computer, and a sick girl on the couch. I will continue to take care of her, but in a different way. Give me one month, then check back.
Until then, enjoy your little ones and appreciate every day you have. Love most of you, you others, I appreciate!! LOL See you around Thanksgiving. You bring dessert.

We are better today

2009-10-29T08:40:00.002-05:00

After the BIG Blow Up on Tuesday night, a deep discussion last night, I think we are better today. I'm thinking it was good for her to release all the emotion and anger she has had built up for nine months. Steff believes I write this blog like we are a perfect happy family not dealing with much. I disagree. Perhaps I don't pour my complete concern or fear of the situation like I once did, but it's mostly b/c I know she reads it. Do I worry every single minute of every day about her? yes. I am very concerned about the episode she had Monday at school, the fact that her brain was telling her body what to do and it would not respond. Hell yes, that scares me to death. Does her knowing how scary this entire NINE months for me has been make things better for her? I doubt it. Today, I think I have made the decision to stop blogging about all this. My heart is heavy and sometimes I just don't feel like dealing with all this. The main thing I want to get across to each and everyone of you ~ I LOVE THIS GIRL AND I WILL DO WHATEVER IT TAKES TO GET HER BACK TO THE VIBRANT CAREFREE GIRL SHE ONCE WAS. There may be changes in our lives as we get there, but we will be okay.
She is very angry with me, as one might expect. I did make the decision to get her these shots that have turned our lives upside down, against her judgment I might add. I pay the price every single day. BUT how could I have known? She is angry, period. I understand. I am angry as well. I'm angry that she can't just be a normal Senior, a carefree teen loving life. Yes, it sucks and it's not fair. But I'll keep fighting the fight. Know that. I will NEVER give up. I'm out ~ love to all.

2009-10-28T09:05:00.001-05:00

It's tough being a mom and quite frankly, it's a thankless job.

Another day in the ER

2009-10-26T21:17:00.002-05:00

Yep, another ambulance ride to the University ER. Steff had 2 pretty bad episodes at school today. For some reason, today it hit her harder than it has for a while. She wasn't able to get out of the room, or feel it coming. She couldn't talk to get it across that she was having trouble. Today was a bad day. She only had one dose of the chelation, so that seems strange. However, we are going to postpone trying that for a bit. She will continue to take the other meds he suggested. It will help push the free toxins out of her body, and help with the inflammation in her brain. The B12 will help give her energy. I kept Dr. Mark in the loop today. He called to check on her later.
I really don't even know where to begin. My heart hurts for her. Some rude comments were made about her today that were repeated to her. I know people don't understand. I know it's disrupting for the school, and hard for kids to understand. But she's just a teenager trying to hold onto some normalcy in her life. She didn't ask for this, and she doesn't like it a darn bit better than the ones making the comments. I hate that the comments came through on her cell in a text. Sometimes things don't need to be repeated, especially if it's going to be hurtful. I'll leave it at that. I'm out ~ maybe tomorrow night I'll feel like giving the details of today, but right now, I just want to go spend time with Steff/Dave.

Just one more post today.

2009-10-24T14:10:00.002-05:00

Steff made it home from the ACTs. She wasn't sure how she did, but did state that reading is just impossible. She has a difficult time comprehending. Her little body stayed with her and didn't give her any trouble. That was my main concern. So, not too sure how many more opps she will have to take it. We'll just have to deal with what she gets. Although she is a smart girl, her testing hasn't always been a strong point. Then add in the brain fog, episode worry and the end result cannot be good. So, that's done. She came home, ate lunch and is crashed out on the couch. Good Day.
Me? Well, I have everything picked up from the living room, the dishes half done and well, that's about it. Dave cleaned the entire downstairs, it looks much better. I just keep puttering around. I ate protein, thinking my brain would kick in, well, it did, just not to clean. I'm thinking tomorrow. I ALWAYS think ... tomorrow.
Need a smile? Dave got groceries, mainly b/c I spend too much money. I pick up stuff, not because we need it, but it's on sale. Anyway, thinking we could save money, I gave him a list and guess what?!? He spent more than I do. He went over my high, excluding Thanksgiving & Christmas groceries. We laughed about it, groceries must really be going up. LOL
I'm making guacamole tonight. I think Ms Steff has plans, so we might throw a frozen pizza in when she leaves. We are pretty good about not eating things she really enjoys in front of her.
I'm out again, going to try to focus on the kitchen. Thinking I might save this computer room for next week, I'm off on Thurs/Fri, inventory. Every ones junk seems to end up back here. It was in the sauna room until I moved it. Oh well............I"ll do what I can. Kitchen, bath, living room. That's my focus now. Later, I'm out. Hope it's a quiet night. = )

No Tears HERE!

2009-10-24T08:18:00.002-05:00

Ha. No tears from us> it was TOOO darn cold!! It saddens me that this will be her last experience with cheerleading, coach, and the cheerleaders. BUT it makes me happy that she won't be having practice or games so often. I know she really enjoys it, but I'm thinking of her health. I was totally impressed with the bags we purchased from M&M for Senior night. Glad I ordered some for Christmas presents!!
Okay. Serious stuff. ugh. The did a dance/cheer routine at halftime last night for Senior night, it looked great. Cute dance with lots of attitude. Steff did good, I did NOT notice anything going on ~ when she came off the field, Dave said she was limping & crying. Great mom I am, I didn't notice. I did see her laying against Carrie, looked like she was crying. Dave thought her knee, I thought it was her last dance.....WRONG!!! She was having an episode. We waited to go down there, thinking she just needed a minute. First off, I do have to say, Carrie's face was PRICELESS. Sorry Carrie!! I'm sure Steff just saw a "safe" place to go, not thinking about anything else. I smiled all over myself, Carrie you did good. LOL Back to Steff, she got up, walked to the bathroom with Coach. I waited a minute, then went up. When I walked in, I saw Steff with that "empty" look in her eyes. I HATE that look. Sara layed her down, she had a couple, rested for a bit. Then got up, put her dry clothes on and was ready to roll out. We suggested she did not cheer, so she sat on the side lines, went out to dinner afterwards, came home, crashed, had a peaceful night. You just CANNOT predict when it's going to happen or what is going to trigger it. I had just said 15 minutes earlier that she was doing so much better, and she is. It seems like the protein is helping. She seems more alert, more focused. She's taking the ACTS right about now, and I REALLY hope she can focus. I'm worried to death about her and the other kids taking the test, to be honest. I suggested she give the instructor a "heads up" ~ I can tell that wasn't going to happen. She just kept reassuring me that she would be fine. I fixed her navy beans with ground turkey in it for breakfast. Hope that was enough protein!!!!

Okay. Back to test results. Her Cholesterol was high, along with triglycerides & both HDL & LDL. He says this will be corrected with her diet. I got the impression that her body is not breaking down her food and processing it for her to get the most from it. Her Homocystine was also low, this indicates a B12 deficiency. It also has an impact on brain function. Her Lymps were also high, he said this is her immune response to Gardasil, we can doctor it and get it calmed down. Thyroid Her T4 is low, it makes hormones. Her T3 is also low, which could be causing her mental sluggishness. (I call that brain fog) Okay. Instead of breaking the rest down, I'll just put which tests were low.
Protein, Carbon Dioxide, BUN, Vitamin D. Basically, I understood that with these being low that they are not getting into the cell to make energy. It measures how well her body is using energy. Her Anion Gap was high, which has something to do with Adrenal Blood sugar.
Okay that's page 2 of my notes. Sounds like I need to go get some nutritional training, doesn't it? At first I felt bad, like she was just eating junk all the time, but that isn't a true statement. Okay, I'm sure she was eating her fair share of junk, but she is a big meat eater. I was surprised her protein was low. Anyway, he said it is more how her body is breaking it down and not getting what it needs from it. If you have more knowledge about this, or can break it down for me, feel free to email me. If you have some insight as to what is going on, again, feel free to enlighten me. I get it, but I'm not sure I fully understand. I am making sure she is eating protein every 2 hours when we are together, and sending it when she's not with me. I explained to her last night. This is costing us a LOT of money. You have to follow the plan or we are just throwing our money away. I do NOT mind spending the money to make her better, but she is going to have to work with us. She is doing good with the gallons of water, the new veggies & meats. To my knowledge, she has only had ONE soda, since we got the water plan going.
Wow. That just wears me out ~ too much thinking ~ I think. LOL I don't mean to act like this is all about her body being off, the Gardasil def added to her problems. Problems that we were not aware of, Dr. Flannery says her body probably teetered back & forth, with just enough to get by, until the Gardasil.
Okay. On a little heavier note..... the girl got ANOTHER speeding ticket last night. When she was learning to drive, I told her over and over, be sure to drive the speed limit, we will NOT pay your speeding tickets, the speed is posted, respect it. She obviously had a heavy foot, even while learning to drive. Okay. Ticket # 2. Speeding in the city limits of Hallsville. 63 in a 45. NICE. How many speeding tickets have I had? NONE. Slow down and pay attention. It's that simple. At least this time she wasn't crying or freaking out. Not sure if that's a good thing or not. She needs to allow herself more time to get there, like, get out of the mirror already and GO!
I'm out. Wonder how the ACTs are going??? Wonder if she drove the speed limit?? Wonder if she will eat her turkey burger on her break? Yep, I wonder a lot. LOL
If you have been to our house lately, you will be VERY glad to know that we have a cleaning plan in place today. As a matter of fact, I should be about half done, and here I am, as always. I feel like it's closing in on me ~ Dave must too ~ b/c cleaning was his idea. He's getting groceries right now ~ I need to get some things started. I wonder....... LOL later.

I'm tired....

2009-10-22T21:30:00.003-05:00

Today was a good day for Steffanee, to my knowledge. LOL Being a mother of a teenager, you always have to cover your bases. One NEVER knows for sure! We went for the conference at school. Got her grade card> was very impressed, especially since she hasn't been feeling well.
She pulled an A in everything, even College English. Well done!
I'm not going into the DR info tonight. Hopefully sometime this weekend I will have time to sit and blog> tonight I'm tired, and just don't feel like dealing with it. Promise to get to it soon though. I think he is onto something!!
Have a good Friday> It's Senior night for Football. FUN FUN FUN!! tears, I'm sure. I'm out!

BRAIN OVERLOAD!!!

2009-10-21T21:27:00.002-05:00

Steff had a peaceful night again last night! YESS!! She came home from cheer practice, looking good and stated that she had a good day. She looked like she still had energy. Guess I read that wrong, b/c right after dinner, she crashed. Still sleeping! Rest is good. I did shut the TV and lights off. Dr says to keep things quiet while she is sleeping so we don't stimulate her brain. Okay, I can do that. Much easier than all this cooking!! AND GUESS WHAT ELSE! Last night he made it clear that she cannot have much fruit. One more thing taken away. FRUIT or fruit juice. IF she eats fruit and she can 2 times a day, she MUST eat it with protein to slow the sugar process down.
Okay. I am going to go through the first part of my notes and then stop. The Gabi Swank, " I don't want to be.....ONE LESS" T shirts came in tonight, so I need to sort, label and bag them up for distribution tomorrow. AND I would like to be in bed by 10. LOL
Okay. He said the worse cases are the ones that fail the GABA test and have a leaky gut. Yep, that would be Steffanee. He then went on to say that her immune system is doing better than he thought it would be. She does have some Immune Dysfunction, but one part of the immune system realizes that there is not a reason to attack. The other part is still looking for something to attack. Her Immune System is not as bad as most girls. This is a good thing. : )
Her glucose was 76, which is a big problem. Glucose makes the brain work. You need to support and nourish it with lots of proteins. She has to eat proteins every 2-3 hours, except through the night. If she's napping, like now, I have to wake her and have her eat. He says the seizures/episodes are from not nourishing her brain. I also learned that the sugar in fruit causes more problems with her glucose. She can only have 1/3 cup of juice, then add water to dilute and fill the glass up.
She has a B12 deficiency. This also has an impact on the brain functioning. It deals with her energy level as well.
Okay, I'm out. Sorry I just touched on the surface. I have lot more to share, but it's going to take time for me to get it done. I have to get the shirts ready, so I can get some of my $$$ back.
Have a good day and pray that this is our answer. I'm out.

hoping I'm on the right path

2009-10-20T21:13:00.002-05:00

Hey, it's getting late, I have TONS to post, but not sure where to start or how to post. LOL I will say, I only lost ONE arm today. However, the treatments need to be done for six months. Her testing came back better than Dr. Mark had anticipated, which is good. We did chat, I do understand and it does make sense. All of it. Things he didn't know about her ~ he guessed ~ and he was right on the money. The belching> if you know her ~ you are smiling about now. Child can put a man to shame with her belching. Yes, I'm proud! LOL Her dad and brothers have encouraged this since she was small. I, on the other hand, find it disgusting. She belches from the bottom of her feet. He guessed she had a burping, belching, gas problem. I'll explain tomorrow. I have to go cook some more. Found out a lot about the brain and proteins, glucose, and what happens to the brain if your glucose is too low. So anyway, she has to eat proteins every 2 hours. Therefore, I just got back from Gerbes and am getting ready to throw some ground turkey burgers in the skillet> of course, with my special seasonings.
He is skipping the cleansing of the liver for her. WE are jumping right into chelation as soon as the box of supplies arrive. He said if she continues to have the episodes, it's okay, but if they become more intense (ugh!) or look different, we will stop everything and go to the 30 cleansing of the liver. Then proceed from there. I have to get those burgers on. Woke up this morning at 5:50, HAD to make it to work on time~ did it. HATE mornings like that, so I would like to be in bed by 10. Prob won't happen tonight!! I'm out..............................

ugh...Monday...

2009-10-19T21:17:00.002-05:00

Last night was a quiet night. However, when I got up, I checked on Steff like I usually do and her leg was going to town. She was sound asleep. I went on to work, Dave was home. She called me before she left for school, telling me how bad her spine hurts. She used to complain about it a lot, but hasn't lately. Dr. H at the University put her in a back brace, then I took her for acupuncture and it seemed like it lightened up. Anyway, today it was killing her. I checked on her a couple of times at school to see if she wanted to come home. Nope, she decided to stay. About 2:30 or somewhere in there, I get a text from Sara, Steff is having an episode. Only today it is mostly in her legs. She stayed with Sara for a bit, then went on back to class. Sara suggested a massage from a friend of hers. She set up the appointment for 4:30. Steff went and Sara, the masseuse, seems to think it will make a difference if she comes 2 times a week. So, we'll try that for about a month and see if things change. Epsom salt bath after the massage, to release the toxins in the skin.
I got a call from CA today. We sat up the phone consult for tomorrow at 4 ~ our time. Hope he has a good plan that is very effective. We'll find out tomorrow I guess.
I made potato soup tonight, legal for Steff & I liked it. = ) I'm out ~ I'm tired!! Hope I bring some good news tomorrow night!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Another quiet night....

2009-10-18T21:02:00.002-05:00

Ah... Steff wanted to spend the night out last night. I frowned on it. Long story short, she came home & crashed, after curfew, I might add!! We knew where she was & who she was with, so not a biggie. She crashed and slept all night. YAY~ sounds like I have a newborn and I'm celebrating the sleeping nights. LOL NOT!! She did NOT feel well today. She did go to Boonville with me to visit family, but prob should have stayed home. I saw a tear or two slide down her cheek, hard to tell if someone hurt her feelings or if she felt that bad. She later told me she felt that bad. We got home, she chilled a minute or 2, then headed to a friends house. I admire her for pushing through it, yet, sometimes I wonder if that's a bad thing. Who knows what the right thing is????
I did tell her to be home by 9:30, esp b/c she didn't feel well. She needs that sleep!!
It felt good having Dave here this week, it was a BIG load off of me while I was at work. He made sure she was okay before he left, or the days she slept in, he was here with her. It's very hard to work and focus on anything. My mind always goes back to her, wondering how she's doing and hoping she is having a good day. By the way, his ribs are getting better, slowly.
I'm out, need to go fix something for her lunch ~ I'm thinking turkey burger Oops, no bread. So I guess it would be turkey steak. LOL I found some Lays chips that she can eat today. AND I found out that Paris Rd Gerbes is expanding their all natural and gluten free aisle. This is good. I also ordered her favorite rice chips there. Life has to get easier. I'm out> have a good week!!
Will post when I learn something.....

Quiet Nights, No call from DR

2009-10-17T17:50:00.003-05:00

Hey! We have had 2 quite nights ~ YAY~ although small, you have to count your blessings when they come! Of course, she slept until she woke up on Thursday & Friday. Rest, oh so important!!
She did cheer at the game last night, her body was sore & complaining, but she cheered. Of course, she was full of Ibuprofen. She came straight home after the bus ride home. Today she worked at the Food Bank, Volunteer hours for NHS, which is good. Dave volunteered with her. I smiled. Usually it would be me ~ today, he jumped on going with her. Bonding. = ) After the Food Bank, we did a fundraiser at Sonic for the Senior all night party. The kids car hopped from 10-4, they get to keep all the tips. Worked out great for Sonic and the Seniors. Not sure about the numbers yet, but I think they did pretty good... and they saved Sonic from paying their regular car hops PLUS they made more $$ than usual with all the Hallsville supporters. I believe the Paris Rd Sonic made a total of $234.20, then the Rangeline Sonic also made tips. So, not a bad day. Car wash made more, but ..... every little bit adds up!! Steff enjoyed it and I believe the other car hops did too!
Okay, now, serious stuff. ugh. I got an email from the DR last night while we were at the Football Game. I sent him an email, letting him know I wouldn't be home until 10. Because you KNOW I wouldn't be able to listen to him at the ball game, let alone comprehend it!! I'm a little slow on the comprehension anyway!! I think I just don't want to face the facts sometimes. Anyway, I'll paste his email ~
Sorry I was not able to call you yesterday. The lab results were not released yesterday. As soon as they are released we can make a plan. The fact that Steffanee failed the GABA challenge is going to change things a lot. I need to review everything again and be certain as how to proceed. Have a blessed weekend and pray the results will be available Monday. Live Healthy. Live Smart. Live Health Wise! Dr. Mark Flannery
There it is. You now know as much as I do. = ) I'm wondering how he treats them and how many arms & legs it will cost me! I've been trying to get moms on the group to email my aol address so I can privately ask questions. Dr. Mark reads & posts on the group page, so I don't want to just ask there. LOL not sure why, just don't. LOL
Okay, I have Aaliyah and Steff is trying to rest, so I prob need to take A downstairs to entertain her ~ by doing wash!! ~ not really. She can stamp while I do wash. I'm out.

A Link to THREE more girls stories

2009-10-15T22:10:00.001-05:00

I was on the Group site and ran across this link, it's about 3 girls in Cape Cod that are having adverse reactions to Gardasil.
Speaking of adverse reactions. I learned today that Steffanee has tingling sensation in both her feet most of the time. When she walks, it feels like she is stepping on needles. This kind of worries me.
Here's the link:http://www.capecodonline.com/apps/pbcs.dll/article?AID=/20091015/LIFE/910150301

Dr on the GABA test

2009-10-15T16:54:00.003-05:00

Okay, so sometimes my brain is just FULL. Period. Sometimes I don't listen when I should and sometimes I just hear what I want to hear. Yep, that's me. So, that being said, I was WAY off base with this GABA test. I was happy she fell asleep, yeah, right. Here is Dr. F's take on the GABA test. He's the Doctor!!
I am sorry to hear (from your message) that Steffanee is not doing well. The fact that she fell asleep an hour after taking the GABA and you could not wake her up indicates a POSITIVE test result. This is not good and most likely the major contributing factor in her symptoms. This is very common in the girls that are having seizure like activity. This is not good and is difficult to treat. The immune testing is done but awaiting final review by the lab. Results should be released today or tomorrow. Once I get those results we can move forward.Live Healthy. Live Smart. Live HealthWise! Dr. Mark Flannery
So, there you have it. I hope STEFFANEE is the exception to the "difficult to treat" ~ I cannot say enough how sick I am of watching her struggle with this. She is such a trooper. Got up this morning, well, 11:00, pulled things together and went to school. I love her SOOO much. I never ever thought I would be dealing with something like this. It's amazing how your mind & body just do what you have to do. AND we will. We will do whatever it takes to get her straightened out. I know her little body is sore and has to be aching after last night. She cried and cried as her muscles were pulling her body in different directions. There is nothing you can do, but sit and pray. Pray that this will be over and please take the pain away for her.
Dave picked her up yesterday from school. He said you could see the worry and stress on the faces of everyone taking care of her. He's concerned that it isn't fair to put the responsibility on them. WE both know how difficult the situation is, but what can you do? Thanks to each & everyone of you out there, for the prayers, concern & help you are giving her, be it physical, emotional or mental. It takes a village. I hope tonight is a peaceful night. Seems like today was a smooth one, but then, it's only 5:00. I'm out.

ugh, so much pain

2009-10-15T07:39:00.002-05:00

Steff had a BAD spell at school on Wednesday, lasted about 1 hour 30-40 minutes. Her muscles are sore, her body is tired. She did good all evening, after a long nap. Went to bed, around 12 I heard her struggling with the pain. It lasted almost an hour, her body is now going into positions that is impossible. Not sure why what or where, but something has taken us back to March. We are leaving her sleeping this morning, we both know it's a difficult situation. Dave will be home with her, not sure how the day will progress once she wakes up and realizes she has missed school. I'm leaving for work, but wanted to drop a note that things are NOT going well. Tomorrow is Friday ~ hope to hear from the DR. with a reasonable plan. Keep our baby girl in your prayers, it's tough on her in many ways. She's a strong girl, but not sure how much one 18 year old can take. = (

I think this is BAD news

2009-10-14T05:24:00.002-05:00

Bummer. I think I spoke too soon on the GABA. Steff had a rough night. Dave came up and laid with her, he's still sleeping. I heard her crying out and Dave said it was in her hip & legs at one point. I think this is bad news. I feel bad that she had a rough night. I'm sure on top of the fact that she feels like she got hit by a truck, it is even worse, after going through all that last night. Hope today is a good day for her. HOPE!!! I"m off to get ready for work. BUmmer!! I was so proud that it put her to sleep, that is what I was looking for. : (
At least Dr. Mark will have the answer to move forward with a plan.

We should know something on Friday.

2009-10-13T19:44:00.003-05:00

Hey! I wish I could post a bunch of good news, but can't. Steff has been having a difficult time since last week with her hips/knees. Yesterday, it went into her entire body. She slept most of the day on Sunday, went to bed at a reasonable time that night, but could NOT get up for school on Monday morning. Dave stayed home with her. She slept until 12:00. Mono has crossed my mind. She says she feels like she has been hit by a truck, her whole body hurts. I sent DR. Mark an email, he answered today. Here is his reply:
It sounds like an immune system response. It is normal to feel this way when the immune system has a response. Think of how you feel when you have the flu. You feel that way (body aches, joint pain, fatigue, etc.) not because of the infection but because of your immune systems response to the infection. Have her rest as much as possible. I hope to have everything together so we can have a consult by Friday and have a game plan for moving forward.
That made me feel better. At least there is a plan in place. She did make it to school today. No makeup, comfortable clothing. : ) Sooo unlike her for school, but oh well, she doesn't feel well. She made herself go and made it all day. We decided to do the GABA test today. I believe it's supposed to let us know if she has a broken barrier in her brain. IF I understood him correctly, she does NOT if she falls asleep within 1 1/2- 2 hours and sleeps all night. I DEF would say she is knocked out. She took the pills at 6, was out by 7 and is still asleep. I HOPE that is good news. Some have asked what GABA stands for> it's actually GABA500. Gamma Aminobutyric Acid.
Whatever that is. LOL
On the food front! Which has become a nightly job for me. Tonight, I learned to make my own taco seasoning. I couldn't find it without MSG in it. Remember, MSG goes straight to the brain. Anyway, I made chicken burritos. Deb found Steff some Gluten free tortilla soft shells. AND I made Guacomole again. She likes it a lot with the sea salt rice chips. It's a shame those are so expensive (compared to normal), because I like them too. Last night I fried chicken strips in a tad of olive oil, with ranch potato chunks, and zucchini. Dave is home this week, hoping he will take dinner tomorrow night. His fish is much better than mine, not sure why, but it is. Enough about food. : )
8:00, still hasn't moved. LOL
Well, that's about all I know today. I'm excited to hear from Dr. Flannery on Friday. I hope he has a plan, possible even an EASY plan of treatment. One that's not to hard on our budget. But whatever it is, we'll deal.
She came home tonight chatting about colleges. Hard for me to think about colleges, when all I can think about is her health. But I'm glad she's focused and is making a plan. Still wanting to do pediatric physical therapy. She thinks it would be cool to go to school in Florida. Well, yes, Ms. Steff, it would. BUT let's be realistic. ~ she doesn't get it, Dave & I will help her to get it, later. I cannot imagine her being that far from home, not as dependent as she is on us. BUT, we'll see, stranger things have happened. I'm out>>> cooking means dirty dishes>> UGH!!

aahhh...Two good days, almost 3.

2009-10-10T21:14:00.002-05:00

aah. Two good days and today seems like it might be three. I am very thankful. When I took her to Kate & Sandra's for the massage, it threw her into a couple of episodes. They massaged, did their energy thing and we all prayed over her for quite a while. It went well. When Steff got up, she was tired, we came home and went to bed. She woke me up in the night, she was laughing so hard. I smiled. OBVIOUSLY she was having a good dream. : ) She made it on Thursday & Friday without an episode. Her entire body hurts though, especially her hips & knees. Not sure if it's the cold or if the episodes were that hard on her.
I will tell you this ~ Dave hurt his ribs, fell onto the dozer or something. Anyway, he moans everytime he moves b/c it's bruised pretty bad. She has absolutely NO patience with anyone complaining about something so simple. She lets him have it, then goes on to say how much pain she is in every single day of her life. How she does not complain like he does, blah blah blah. They went at it, jokingly for quite a while. I just smiled. He is still whining, just for the record. = )
Friday night was the football game. She came home from school walking funny. Her hips & knees hurt bad enough that she didn't cheer. Instead she & Sadie went around selling rally towels & chances for the 50/50 raffle. I was worried about her, b/c I was freezing my butt off out there, and she had on less than I did. We made it, she slept well and was cheerful today. It is VERY hard to get her to eat every two hours. As she left tonight, I handed her a baggie of apples, an orange cut into quarters and some rice chips. They might go to waste, but I"m trying.
I talked with the Dr. in CA again on Thursday night. You KNOW I was stressing that she was going backwards. I was REALLY depressed. It just took me back to the beginning of all this. He stressed how important the diet is, including the eating every 2 hours. He said the jibberish she speaks after an episode is because she probably has toxins sitting in her brain, causing her transmitters to misfire. He also said that these girls usually have sensitivity to light & noise (Steff does) because the cells in the brain are firing too much. It's too much stimulation for her brain. Here's the funny part> he said she needs to be in bed by 10 without any music, tv, lights, or noise~it taxes the brain too much. She is supposed to be up by 8:30 on the weekends. That's the funny part. He stated that we have to re-pattern her brain. An afternoon nap for 1 1/2 hours, then up. I just smiled. I will do everything he says once he gets her blood/urine tests back, but that to bed at 10 on the weekends might be a hard one to sell. I will try. I do want her better, much, much better. So, I'm looking up again, my heart isn't as heavy, my load is lighter. I did hand it over, but the worry keeps hanging on. I love that kid! I do have to say, her patience with the new diet is very good. I am learning to cook with new produce ~ I made a great guacomole dip. She really likes the brown rice tortilla chips to dip with. Denise & Charlie gave us a lot of fresh veggies, frozen & fresh to stir fry with!
Okay, I'm off. For those of you that know my family ~ Stacia had her baby today. Boy. 5# 3 oz. No name yet. He's a little guy. I took some good pix> my camera only uploaded 2 pictures of 6, and deleted them from the camera. Ever have that problem? Know how to help me fix it ~ give me a call. Right now, I'm pretty unhappy about it.
I'm out> life is good > Steff is good> we are all smiling > life is good. Day by day, hour by hour.

So far, a good day

2009-10-08T17:27:00.002-05:00

So far, it's been a good day for Steff, to my knowledge. I called Sara at school to check on her, she said she hadn't heard from her. That was good to hear! I also checked with one of her teachers, she said she seemed good today, laughing. The remainder of my day was better. I worry about her every single minute of the day. Yes, I do try to turn it over, but I still think about her. She has been having a lot of pain with these new episodes. The twisting of the arm, the twitches, were a lot easier on her. It rips my heart every time she screams in pain. It just isn't fair. That's what goes through my mind. It just is not fair. I can speculate all day on why it has started back up, but still don't have the answer. I really don't know why or what is causing it to get worse. BUT I do know that I Hate it.

I love her smile, her laughter, her little smart ways, her DRY sense of humor. I miss that. I love her light spirit ~ it's been a while. I'm not angry, just bummed. Bummed that I can't stop this, bummed b/c it's gotten worse. But mostly disappointed that she is having a difficult time enjoying her Senior year. Yeah, I know, that there will be bigger and better things, but she IS so excited about her Senior year.

I should celebrate the good days, and it looks like this might be one! AND I am thankful for a good day for her. So, I'll get off her and go start her some dinner ~ I know she will be coming home hungry!! Please keep her in your prayers.

Another UGH!!

2009-10-07T22:55:00.001-05:00

Another BAD day. Massage for her tonight. Praying for a better tomorrow. I am sick of it. Bottom line.

UGH!!!!!!

2009-10-06T23:20:00.003-05:00

Today was a very rough day for Ms. Steffanee. It's late and I'm off to bed. A VERY big thank you to everyone in her life that is so patient and understanding with her. I really think we are going to have to slow her down, let her body rest. Last week was very hard on her. Seems the more she pushes her body, the more it pushes back. UGH. Long Epsom salt bath & off to bed for her, when she got home. Lots of rest tomorrow~ short day. I do hope she listens and comes on home to rest. She needs it. I'll fill you all in tomorrow, I'm sick of talking about it tonight. Quite frankly, I'm just sick of it. My little trooper is wearing down as well. Good night.

Two down, One to go...

2009-10-05T21:35:00.002-05:00

The blood is drawn and on it's way to Florida and where ever else it was going. It was going to two different labs. It took ALL morning, but we got it done. Steff did real well with the giving of the blood, but the place was difficult to hunt down! We made it, Thanks to Nancy's help.
I dropped the other (ua) package off at Fed Ex this morning before we left town, so that's on it's way. The final test is the saliva, hoping to get it done next Sunday. = )
We both only made it 2-3 hours at school/work today, so we aren't tired tonight! ha I also took her to Dr. Menard for an adjustment on her back. He said he could tell something was going on, her back was very tight. She felt better when we left there. So, all in all it was a very successful day.
I asked her tonight if she still had that shaky feeling inside ~ yes, it hasn't gone away. You would NEVER know it by being around her. Trooper! Not much else going on around here ~ that's a good thing. quiet & calm, my two favorite words. Hope it stays that way all week. Early to bed, peaceful days and lots of smiles. That would be a Good Week. Hoping you each have one as well!!

More Pix From HC

2009-10-04T19:57:00.002-05:00

NICE!!! What more can be said????

The Four Seniors on Court....

HC pictures ~ : ) Hot Seniors.

2009-10-04T19:35:00.003-05:00

Lexi Steff Sadie & Bethany............oh yeah!!

Kendell Rock & Steffanee below. The four running for queen above.

Homecoming Dance ~

Gabi Swank T shirts

2009-10-04T11:02:00.003-05:00

Yes, you all know I have an obsessive personality. = )
So, I'm letting you all know I am placing an order for Gabi Swank T shirts again this week. Let's spread the word AND help with their fundraiser. Shirts are $12. with $2. shipping. $14.00 total. It's a small price for such a BIG message. Besides, the money goes to help pay for Gabi's medical bills. I would LOVE to send them more money!! Last order was $160.00. Give me a call, or I printed order forms for Steff to pass out, if she's asked for them. I don't want to open her up to insults or injury by other's opinions. So, if you want an order form> ASK HER. She's very supportive of this fundraiser for Gabi Swank, a cheerleader from Kansas.
Black shirts, Gabi's name & ribbon on sleeve, verse from Coritheans on back, with ribbon and on the front I don't want to be "ONE LESS" It pretty much makes a statement, while supporting this sick young girl. $14.00 Money with order would be good. = )
I dont' know how to attach the order form, so if you don't live close and want to order one, shoot me an email, I can attach one to an email. THANKS>
R0br1ch24@aol.com Best to copy & paste it. The 0 & i in Robrich are numbers.

DR> MARK ~ Simi Valley CA

2009-10-04T09:25:00.003-05:00

Steff's still sleeping ~ surprise! surprise! LOL Sound asleep. Today is the Urine test day. We have to collect the first morning specimen. After at least 2 hours, she has to drink that "special" drink, then we collect the urine for 6 hours. Long story short> I take it to Fed Ex in the morning and get it shipped to the lab. This test will let us know if she has a leaky gut, if the barrier is broken. Yeah, that's what the DR. said.
Okay. To what the DR. did say on the phone consult ~ the overload I was on and am still processing. I have my notes here, so stay with me. I just read an article that makes sense to me now> Here's the link, but read Dr. Mark's infor first, it kind of all rolls together.
http://www.americanchronicle.com/articles/view/122199
Okay, he says he would NOT give the HPV shot to his daughter. He does not talk the vaccine down, just states the he would not give it to his kid. He says it is not the Gardasil Vaccine that is making these girls sick, it's the straw that breaks the camels back. The girls that are having the adverse reactions have a predisposed condition, they have medical problems that teeter back and forth on being a little off and being normal. The vaccine pushes that problem over the edge. Now, if you read that article, you will read about girls that died after the shot, the medical problems that were found. I'm buying it. We all know that Ms. Steffanee had some kind of hypoglycemia/passing out/anxiety during her freshman year. The DRs at the hospital kept trying to link the two ~but couldn't. I'm wondering if we had it pretty much under control, but not completely, then the vaccine caused it to flare up 110%. He says these girls have broken down barriers, be it blood or brain, and it lets the toxins settle into the weak areas. That is why we are doing the UA/Saliva to test for broken down barriers. She also will be taking another test, called GABA, to check the brain barrier. It's an easy one. I give her 2 pills around 5-6 pm ~ it should knock her out for the night. If not, I am assuming she fails. We didn't go deep into this test, just that it will be a clear response.
Dr. Mark says he has seen and heard of the twitching eyes, rolling eyes, but has not heard or seen any of the blurred, tunnel vision like Steff has. He said it sounds like Opti Neurotis, which is inflammation of the Optic Nerve. We'll deal with that as we get her healed. Which, by the way, her vision was messed up last night for a while. and YES, it does worry me. a LOT.
One reason she is on this strict diet is to control the inflammation in her body. General Inflammaion is affecting the nervous system. Removing certain foods helps to control it.
He said in Feb/March her Active Immune Response (AIR) was low according to her tests and it looked like her Immune System was going crazy. By doing the extensive blood panels, he plans to look at the break down of immune panels and get a handle on it.
It take 2 nutrients to make the body run smoothly. Glucose (blood sugar) and Oxygen. Without these, the brain cannot function properly. According to Steff's blood testing in Feb from the hospital, her B12, which supplies oxygen, was defecient. He also is thinking that she has an iron deficiency. Tests will tell. This is also where the idea that she is Reactive Hypoglycemic. Stay with me here, b/c I may not get it correct, but you will get the idea. Sleep modulates the adrenal glands. The adrenal glands balance blood sugar, manage blood sugar problems, they also help balance minerals. I wrote down hormones too. So, he also wonders if Steffanee has an Adrenal Dysfunction, along with the Hypoglycemia. So, if you are following all this and you were aware of the problems she had her Freshman year, it makes sense. So, he is doing a full blood work up on panels to know how her body is functioning, it will show where the body is not working. I will be taking off work and taking her into Boyce & Bynum on Monday morning. I believe they open at 7:30 Am, so I can get her back to school ASAP. Unless of course, she does that passing out thing and has problems.
Are you on info overload yet? Or perhaps I was, b/c I'm excited again and hoping for a solution to her problems. He did say the diet is VERY important, so we'll be doing it for quite a while, I'm sure. I keep telling her 2 months. If you can do it for 2 months, you probably will adjust and be okay with the healthy foods we are eating. I have stopped wanting chocolate. Not sure what that's about, but I'm sure it has something to do with all these veggies we are eating. As I was asking Steffanee all the questions on his paperwork, I was thinking that "hey, I have a lot of these issues myself"~ of course, we all eat at the same table. : ) I get it.
This is a long post, so I'll try to wrap up. She did survive HC week, barely. Now it can only get easier from there. No cheer practice on Mon or Tues. Lots of rest and lots of good food. I am getting better about her choices. I fried rice with fresh veggies last night. It was SOOO good. Who knew? I never fried rice before. It's called fried, but it's actually just sauteed with celery, mushrooms, carrots & cabbage. I threw HOT salt in for a seasoning and it's good. Today, doing the Urine test, she cannot have mushrooms. Go figure! I guess I'll go cook some without. Looks like I will be making at least 2 runs to the store each week. Fresh veggies don't have a shelf life like those foods we used to eat!! LOL Okay, I'm out. If you have information to share after all this> feel free> my brain is clear as mud!! No, really, I get it. I REALLY feel we are on the right track. Dave, well, he's a bit questionable about it. He still wants me to call other families to make sure this DR is on the up & up. I kind of want to, but I don't' want to lose all this hope I have filling me up. I'm out for sure!! Hoping for a GREAT day tomorrow, but really, I know it's going to take time to heal the damage done last week ~ by pushing her body to all of it's limits and past. Have a great day!!!!!!!!!!

IMG_4824.JPG

2009-10-03T16:16:00.001-05:00

Click here to view these pictures larger

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2009-10-03T12:56:00.001-05:00

Click here to view these pictures larger

She (WE) SURVIVED IT>>>>>

2009-10-03T11:26:00.002-05:00

WEll, Ms Steffanee survived Homecoming ~ her body fought her all the way ~ and I'm not sure yet which one won! She's still knocked out. Friday was a FULL day, after a very FULL week. She was excited, but exhausted. School, parade, practice, dinner w/cheerleader, get ready for the game, Game, then Homecoming Dance. I never thought it would all happen, as much as I would have liked for it to. She called a few times during dinner, trying to figure out what was on her diet and what she could/couldn't eat. Her voice was flat ~ I KNEW, and asked, she didn't want to talk about it, yet another bad sign. Long story longer ~ after dinner on the ride back to Hallsville (luckily with the coach!) she fell asleep and the episode with the screaming began. I know the other cheerleaders had to be freaked out. When Sara called me to say she was bringing her home, I could hear her. THAT took me back to February when it all began. OOps it's not about me! LOL Dave went out and carried her in~ that always touches my heart. He layed with her - me, I was back to I couldn't do anything right. Talking too loud, too much, nothing I did was right. THAT told me she was in a lot of pain, it's been quite a while since she has acted like that. So, I went about my business and let Daddy take care of her. I lost the battle.HE said we could all go to the HC game IF she sat with us by the cheerleaders. I said NO. He said YES ~ and we know who won. STEFFANEE. She kept crying that this was her last HC. All went well. WE all made it through it. She also went to the dance, against my wishes ~ looked absolutely amazing in her tight little sequined dress. I was a nervous wreck by the time she called and came home. It's over ~ she got to experience her Last HC and we survived. This week> I'm the boss > and I see lots of rest in her future! (Dave will be out of town) So, there was our Friday ~ up, then down, up, down. I was confused!! ha
Seniors won 1st place with their float ~ and it looked fabulous!!
I decided to wait on the saliva testing until next Sunday. It has to start at 6 AM and ends around 10 PM ~ hard to have her keep spitting while she's sleeping. Urine testing is a go for tomorrow and the blood on Monday. I'm focused, but a realist as well. Have a GREAT weekend everyone~ and enjoy the FALL weather ~ whether you like it or not!! HA

ONE more FULL day/night OF homecoming

2009-10-01T20:30:00.003-05:00

WOW! This week has been extremely hard on STeff, but she is enjoying every minute of it. She still has that shaking feeling inside of her body ~ hoping that more sleep/rest will take care of that. I spoke with Dr. Mark today, the plan is... to do her saliva testing on Saturday, Urine on Sunday, Blood on Monday. I'll be mailing the first 2 off on Monday.
Anyway, I pray that she last through Friday evening. Saturday she can sleep all day> I'll just wake her to do the saliva test.
I need to go figure out lunch for tomorrow> that's a new thing in our lives. I used to just throw a sandwich together, chips, snack and that was it. Now it takes a lot of thinking ~ but I'm fixing mine as we go> we have to be getting healthier! She informed me tonight that she has lost 4 pounds. She was happy. ???
I'm out, trying to get things wrapped up early~ I'm exhausted!

A few Homecoming PIX

2009-10-01T20:21:00.005-05:00

Right after it was announced that she won.

Are they CUTE or WHAT??

WHO KNOWS!!! LOL

Steff & Grant Abell ~ King & Queen 2009

Steff & Dylan, her escort.

I'm happy to be posting pix that Terri Trickel took at Homecoming.... mine are still in the camera, but Sadie & I did get some good/funny shots!! : )

SHE WON!!

2009-09-30T23:50:00.002-05:00

Ms. Steffanee Richardson is Homecoming Queen and Mr. Grant Abell is HC King. It's late, I'll touch base later, with pics!!!!!!! She was ALL Smiles.........: ) : ) : )

The yes and nos of food

2009-09-29T21:23:00.002-05:00

I'm going to put the eat and avoid foods at the end ~ just so you know what we are up against. We will do it, no question about that. Help if you can. Tonight I sauted some fresh veggies & stir fried them with brown rice. I thought it tasted good, she balked, but ate it. : ) News flash for her> that's what she is getting for lunch as well. LOL Anyway, after the softball game, we went to the float building thing. It's coming together ~ it always amazes me that it comes together in the end. Steff had a headache while she was there. Is laying down now, says it feels like her insides are all shaking. Bummer. I feel bad for her, but don't know how to make it better ~ benedryl you think? Shut the body down so she doesnt' feel bad? Yep, that's the kind of mom I am. I would in a heart beat ~ just hope she'll be able to get up in the morning.
I need to go load up the cardboard I've been hauling home for a couple of weeks. The bon fire is tomorrow night. I got online to check the weather> and here I am!! Dang> I need to get things done. Court crowning tomorrow night!
Here's the food chart>
Foods to avoid:•Any food that you are allergic to it.•Dairy (milk, cheeses, yogurt, butter), eggs, margarine, and shortening•Foods prepared with Gluten containing cereals like wheat, oats, rye, barley, normally found in breads, pasta, etc.•Tomatoes and tomato sauces, corn, peanuts•Alcohol, Caffeine (coffee, black tea, sodas)•Soy or products made from soy, such soymilk or tofu•Peanuts or peanut butter•Beef, pork, cold cuts, bacon, hotdogs, canned meat, sausage, shellfish, meat analogues made from soy

Foods to eat:•Drink plenty of water (8-10 glasses), herbal teas, green tea, fruit juices (no sugar added), vegetable juices•Consume grain foods made from rice, millet, quinoa, buckwheat or tapioca.•Fresh fruits, vegetables, beans (navy, white, red kidney, etc., peas (fresh, split, snap)•Consume mainly fish (not shellfish), and moderate amounts of chicken, turkey, and lamb•Use mainly olive oil, canola and flax seed oil in moderation
Well, you tell me!! Should be interesting, the next couple of months. LOL

Quick one...

2009-09-29T16:34:00.002-05:00

I need to make a correction ~~ Dave didn't shoot me down, he was just trying to reel me in. Words straight from his texting! : ) and WHOEVER thought HE would be texting. That in itself is funny! He is very supportive, didn't mean to incinuate anything other than that. He just knows how I am ~ as most of you do! When I'm up ~ I'm REALLY up and when I'm down, I'm pretty much a b....... : ) Life is good. I gotta run to cook this girl some food> you know she cannot be eating those burgers or hotdogs. I'll post the new list of can & can'ts OMG> but whatever it takes. LATER> and know that I'm still smiling! Hope is a good thing.

Dave is RIGHT.

2009-09-28T18:32:00.002-05:00

I'm BAAACKKKK! just spoke with that handsome husband of mine ~ he told me to get off that roller coaster, come back down to the middle. We've been here before. Hey! I think he just shot me down! He's right. I don't need to get Steffanee all excited, in case I'm wrong. BUT I have hope that Dr. Mark is the answer I've been looking for. I will stay in the middle, and still have hope. Something we haven't had in a while. Life IS good!

Should be short....

2009-09-28T18:03:00.002-05:00

AGH! This has to be short, I have things to do! Like figure out what the kid can eat, now. She is volunteering for NHS at the ball game, then off to work on the Float building. I believe she also has a College English paper due tomorrow. Somewhere in there, I need to take her some healthy food.
Okay. I am SSSOOOOOO on information overload. I was writing very fast to make sure I got everything. Dr. Mark is sending me a box full of testing supplies, along with the papers for the lab. Instead of going into detail right now about his plan, I"ll tell you what he "thinks" is going on with Steffanee, according to the answers to all the questions and from past blood work she had done. I had to fax over 50 papers to him today. All the testing she has had done since Feb. He looked over it, she was very low on Vit B12 back in Feb, which means she has poor oxygen levels in her body. Oops, here is what he is speculating with her> nothing is solid until HIS testing is finished. He is thinking she must have hypoglycemia, along with adrenal gland dysfunction. Those glands manage blood sugar levels, balances blood sugar. I also got a grip on the barrier thing. The blood barrier/brain barrier. Usually the toxins settle into muscle tissue, when you start detoxing, it pushes toxins out into circulation, and they can end up in a more damaging place. I was very impressed with the simple way he answered my questions. He explained things so they were easy to understand. He said we will start making a plan once he gets the initial blood testing results back.
Did I say short?? I am so full of information, I want to share!!! : ) I'm out, need to find some meat and veggies/fruit for the medical mystery girl!!
I learned a TON of info and wrote it all down, so I won't forget!! ABSOLUTELY NO sauna, NO ionic foot baths, NO foot patches! But Epsom salt baths are GOOD. WOW, I might have done one thing correct! : ) Later, I hope. If not, I'll be back tomorrow! Sadie has Senior Night for Softball, so it will be after that, OH! and after float building. Perhaps, another day!!! : ) I'm a happy woman right now!! WE HAVE A PLAN~ AND YOU ALL KNOW THAT IS VERY IMPORTANT TO ME!!! Perhaps Dr. Mark is the answer to all my prayers. Perhaps.

It's Sunday....

2009-09-27T13:06:00.003-05:00

Hey! It's Sunday, Steff has cheer practice and float building today. She went to a friends house last night, slept in this morning. The sleeping late is nothing new. The child has always been a sleeper! During her last hour of sleep, she went into an episode, legs first, then hands, back. You get the picture. She cried quite a bit, and made that horrible noise that she makes. Then it was over. She woke up about 20 minutes later, and we didn't even talk about it. I fixed her a breakfast full of protein and a fruit smoothie and off she went.
The one lady from the Group that I chat with emailed and called me, she is VERY concerned that it has gone into Steffanee's vision. She kind of scares me when I talk to her. I know she is wanting to help, but I'm doing every single thing they have suggested to help her. Not sure what is going wrong OR why things aren't turning around. Granted, yes, she is better than she was in Feb., but come on now, it's been how many LONG months? Feb-almost Oct.
Okay, I'll quit complaining and go finish closing the pool. Tomorrow I speak with THE DR MARK, he is our hope for today/tomorrow. God Bless this child, she hangs on with all she has. She is a little trooper! OR hard headed like both her parents, either way, it works! : )

Okay, I got in touch.

2009-09-25T16:07:00.003-05:00

Okay. I got in touch with Dr. Mark's wife, who also is a DR. We chatted for quite a while, she, too, is very concerned that this has gone into Steff's eyes/brain. Well, actually, I do remember her eyes doing that quiver thing and rolling back into her head, so maybe Dave is right. Anyway, I made an appointment with this DR. in Simi Valley California ~ how? What? I'm sure you're wondering. A phone consultation for Monday @ 4:30, our time. Yes, it is expensive, but can you put a price on Steffanees head? Well, okay, but..... He works through Lab Corp to get the labs done. He looks at totally different things than a regular DR. I have to fax him all the results we have from prior testing & a new patient form before Monday. No, Dave doesn't know yet, but what will he say? This is the only DR that I am aware of that is getting results helping these Gardasil Girls. If you go back to February on my blog, you can find the posting about Dr. Flannery. At that time, I was in denial about Gardasil, I wanted it to be something easier to fix. SO, when I read it now, I read it different, besides, all we've been through, I can understand it. SO, there you have it. I need to get ready to roll to Fayette to babysit that medical mystery of a child we have. Just wanted to touch base & fill you in, so my phone does not ring. Other words, please don't call me asking questions, I'm sick of the phone and I'm sick of talking about this today. Check with me tomorrow, it may be a better day. : ) I'm at wits end here, just doing the best I can. I really am doing the best I can. I thought the GF diet would make things better, so what the heck has happened??????? UGH!!! UGH!!! What more can be said?

Not good news....

2009-09-25T14:08:00.002-05:00

I'm on a mission, so this will probably be short, should be anyway. Steff had a FANTASTIC week, I was bragging on that at work, when I got a phone call. She did have a rough night, I heard her and moved my sleepy butt upstairs to be with her. She would jerk, have that shiver thing and wake up, making wierd noises. She usually doesn't remember these, and her life goes on like it didn't happen. So, I was very surprised to get a call from her. First off, she has done the Gluten Free all week, and finds that it is not too bad. This is good. Okay, the phone call. Her eyes are blurry today. She can't focus in on things. Not sure what that's about, then I went up to the school after work, (VERY LONG 4 hours after she called!!), she was in the office, doing her work, her eyes look bad. No shine, just flat. She said they hurt so bad, behind her eyes. The sun hurts them too. This is all new to me. SO, I'm trying to call the DR in CA. hoping he can explain to me what is going on. They said there would be set backs after you start the GF diet, but this new. I just spoke with Dave, he says it is not new. He's probably right, I have that selective memory, or so he says. : )
I called the one lady that heads the Gardasil Group this morning, the news I got from her was not good news, very upsetting as a matter of fact. BUT she is not a DR, just a mom that has also gone through this, but not to this degree. SO, I need to roll off and give the DR a call, I really hope he has some suggestions and answers for me.
Those doors at that gate are starting to squeak open> and I hate it! It that's over your head, just let it go.
Put my girl in your prayers, .......................... let this be over soon. I've had enough.

Quiet Weekend

2009-09-21T22:45:00.002-05:00

Hey Folks! We had a rather quiet week end, on the Steffanee watch. : ) She had a small/med episode at school on Friday, at lunch. Handled it by herself, then moved on with lunch. These are the days that give me hope, that one day, it will come to an end. Then today, Monday, she had some bad brain fog, (hard to explain, but it's there!) She realized it and removed herself from the class. She regrouped after a while and moved on.
She started the Gluten Free, Dairy Free and Sugar Free diet today. At first she balked at two months, but I reminded her that we've been fighting this for 7 months ~ if doing this diet for 2 months keeps us from continuing the fight ~ it will be worth it. She smiled and caved. : ) It will be mostly veggies, salads, fruits & meat. We'll all work on this together. I marked the calendar to see if we can see any difference in two weeks. One day at a time. I smiled at her tonight. She said she had two hot dogs at the game, without the bun. Good thinking, except I'm sure those dogs were full of preservatives. I didn't say anything. We'll get there.
I also got her car license lights fixed tonight. Much cheaper than we were quoted. The cost was in double digits instead of triple. Life is good. : )
On a heavier note, we found Prancer tonight. Sandra & Datyn found her in the woods behind our house. I guess she died on Friday. She was here that morning, but didn't come back home like she usually does. They all 3 meet me at the door when I come home from work. Bummer. And now there's 2. Dave & I both will miss her. She was mostly his cat, slept at his feet, biting them every now & then. She was full of pi.. & vinegar! If you passed her while she was laying on the carpet, she would reach out with her paw to grab your leg/jeans. We'll all miss her. Hope she's in cat heaven.
Here's to hoping for another smooth week. Steff passed out early, like as soon as she got home from the game. Hope it's a good one!

We both made a full week minus an hour or two

2009-09-18T23:43:00.002-05:00

It's Friday and we both made it another full week, minus an hour or two. : ) Football tonight, they lost again, but seem to be getting better. Cheerleaders looked good. I helped with the taco supper the moms decided to have for the team & cheerleaders. That was interesting. I like to watch the kids, how they've grown, changed and moved around in different groups. Hard to believe they will be graduating!
Steff had a pretty good week, she was tired most of it, probably due to being sick. Her cough is much better and it seems like her side effects from the anti biotics are minimal, so far. She did have a muscle spasm today at school around lunch time. Really didn't have time to talk about it, people were around, only talked to her at the game. They are all out running around now ~ enjoying each others company after the game. She said it was in her shoulder again & arm. Not sure how long it will take for the pro biotics to get into her system to make a difference. I'm guessing a couple of weeks. I'm hoping, along with the clean diet, that things will improve soon.
Steff & I are going to the MU game tomorrow with Josh> I hope. Someone said they were sold out on tickets. Not sure, he's taking care of that, if so, oh well, Steff could stay home and use the rest. Yeah, and me too. Rest is good. Dave's going to SL with his mom & sisters to a Cardinal game~ their once a year trip, which is pretty cool. I hope the weather is good for them. Bonding.
I'm out, time to lay down & wait for the Tired one to come home, with friends, I might add. Then I'm heading to bed. Have a good week end!

Today was good, all the way around.

2009-09-16T22:08:00.003-05:00

Today was a good day. Steff made it all day with out any episodes. She feels a little better AND we went shopping at Clovers on Chapel Hill. Much better experience than I've had at the Clovers on this side of town. I'm glad. The guy there was very helpful, told Steff the secrets in the Gluten free products. He obviously eats them. He steered her in the right direction and was very convincing on how easy the transition can be, once you make that decision. We were in there quite a while. We also picked her up some Probiotics. Yeah, you got me! It's for immune and digestive support. (I have the box in front of me! : ) ) I guess she has too much yeast (only b/c that's what they say you get from the Gardasil) So, we need to heal her digestive system before we introduce the detox (you know, the niacin.) I'm working on it. She even got sunflower, gluten free bread, Pizza crust, cereal and some really good non dairy, gluten free ice cream. Just realized the ice cream probably has sugar in it. SO, I'm 2 out of 3 there! I'll tell her to eat it all tonight, b/c she starts tomorrow! Ha. not really.
So, she needs to be dairy, sugar, and gluten free. What does that leave you ask? Well, veggies, fruits and lots of protein. Just like our great great grandparents ate. That's probably pretty close to the way I understand it. Take the processed foods out and go back to the basics. Probably good for everyone to do that. JUST NOT AS HANDY OR EASY! I'm trying really hard to get there.
Okay, Back to Steff. : ) I got a call yesterday at work from Sara, the nurse/cheer coach, Steff had just had an episode at school. Sara was calm, which kept me calm, as she explained to me that Steff had removed herself from her College English class, b/c she felt overwhelmed and could tell what was coming. Sure enough, so to the counselors office she went. Sara and the new nurse helped her through it. Sara told me she was fine, and would be taking it easy in cheer practice. Knowing how I am, I'm sure most of you are surprised I stayed at work and let her go on with her day. ME TOO!! BUT I have to say, I am very secure and sure that Sara "gets it" ~ she knows how to handle Steff and these things. I trust her, as a matter of fact, it makes life easier to know that Sara is there for her. So, thank you very much Sara. I'm glad you are there. It was not as bad as the one on Friday at the game. So, maybe things are getting better in there. I'm sure the "touch" of pneumonia is dragging her down, not to mention the niacin. Besides those two factors, the group says they have all had set backs with their girls from time to time. So, there's an update on our wonder child. LOL
Gardasil. The ladies that were doing the project finished it. They did a great job and mailed out hard copies to a TON of elected officials, along with others. CDC, FDA, Merck, etc. I made copies and plan to share. They put faces on the stories. It's hard to read, but makes me realize that we are lucky. Lucky in a difficult way.
I'm ordering Gabi Swank T shirts. They say I don't want to be "ONE LESS...." on the front, with a scripture on the back. It's a fundraiser for Gabi's family. You know me!! I'll order them. Hit close to home. I'm mailing it off on Friday. If you want one, let me know. $12 shirt $2. s/h The shirts are black, the ribbon is lavender. (it's with the scripture and the nvic web address)
Okay, I'm off, need to get to bed~ Any suggestions, input, output, or ideas? Email me!! Like, if you thought about the niacin hurting her, I won't be offended if you tell me BEFORE I do it!
Life is Good. Have a Good Thursday ~ and hope we do too! : )

2009-09-15T18:09:00.001-05:00

'May today there be peace with in. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us.'
Thanks for sharing this, Diann & Nancy. What more needs to be said???

UGH!!!!!!!

2009-09-15T07:31:00.002-05:00

Okay. I took Steff to the DR yesterday in Hallsville. Very nice DR, a little different, but nice enough. She has a touch of pneumonia. Yep, you read it right. She sleeps all the time, which is good. I told her to say it's bronchitis, so she doesn't catch a lot to flack for coming back to school. She completley stresses out about missing school, which isn't good for her either. She's on a Z pack, which worries me as well. BUT one thing at a time and right now, she is sick. She just headed off to school, with water in hand. I'm making this short & sweet, b/c I need to get to work. I tried to talk her into staying home today and resting all day. Didn't happen. Yep, I was going to stay with her.
She took her Epsom bath in my tub last night, then crawled into our bed. (Dave's out of town) I rubbed her back, which it really tight, for quite a while, then she fell off to sleep. Here's where the "I need to post" comes in. Her little body jerked, twitched, and spasmed for a long time once she fell asleep. So, things are still going on in there. Not sure if it's due to the great NIACIN I tried giving her OR that her immune system is so low. Either way, please be aware, that we have taken a few steps back. BUMMER. But that's just the way it is today. Okay, now that I've given you a heads up, I need to head out. Sally, Sara, if you need me, DO NOT hesitate to call. She will be heavy on my mind all day.

Gabi Swank Update

2009-09-13T15:19:00.001-05:00

I know if you are on FB and my friend, this is a repeat, but just the same, I want to keep sharing. Here is an update on Gabi Swank, the cheerleader from Kansas.
http://www.kansas.com/news/story/968761.html

Not to be dramatic, but.....

2009-09-13T13:01:00.003-05:00

Honestly, when dealing with this gets the best of me I feel like the gates of Hell opened up in February and we fell through them.
I know that is dramatic, but sometimes that is how I feel. I know sometimes I don't deal with this very well. This blogging is therapy for me ~ probably more than it is for informing you. I don't mean that in a bad way, but good gosh, SEVEN months later and we are still dealing.

I know that some people worry about her driving. TRUST ME~ so do we. Then we sort it out, she can feel them coming on for quite a while before she goes down. I have talked and talked with her about it. She knows the importance of pulling over as soon as she feels "muscle spasms"
I'm sure you all also know that we are doing all we can to keep her life as normal as we can. We would not take a chance on her life or anyone elses. But yes, we think about it.
Just wanted to throw all that out there, so I feel better. Yes! As a matter of fact, today it is about me! LOL Today, I'm sick of it, obviously. It breaks my heart.
Steff is FINALLY up and moving. Still doesn't feel good. I'm washing sheets, comforters, then getting myself into the sauna~ to cleanse my system and my mind. After I'm finished and it's up to the temp she needs, I have convinced Steff to get in for TEN minutes. I know it's not the 20 that she needs, but TEN is better than none. I'm going to try 2- Ten minute sessions for her a week. She hates it, I love it. Then I guess I"m heading to Boonville to take mom shopping. STeff will be staying here with Dave. Yeah, I thought that last week too. LOL
Tomorrow will be a better day!

I wonder.....

2009-09-12T23:57:00.002-05:00

Okay, I'm back. Steff's sleeping. She still has quite the cough and is still sleeping quite a bit. I'm feeling like "mom of the year" again, wondering if I should have taken her to the DR last week for this cold thing she has going. It was seven days on Friday. She stayed home all day & night today, laying around. She planned on heading to a friends about 10ish, Dave & I talked her out of it, to say it nicely.
Last night....... I watched her cheering like I always do, but her right arm kept coming off her hip, she kept stretching it out and moving her shoulder around. I knew she was probably having muscle spasms in it. I kept thinking, if she can hold out until halftime, Dave or I would massage it and talk to her. It started getting pretty bad just at the end of the 2nd quarter, as Dave & I headed to the coach, she was on it. We all three were heading in the same direction. Coach took her to the end & back of the bleachers, Steff was standing as coach rubbed and massaged her shoulder muscle, she said she almost had the knot out of it. Then the band was coming out for halftime, so we moved Steff further away from it, she could barely walk. Once we got there, her legs buckled and down she went. We got jackets and blankets to keep her off the wet grass and let her lay. It went into her hip, her body was pulling in different directions like it used to. Dave, coach & I were trying to keep her comfortable & were rubbing her muscles. It seemed like a long time (as the mom!!), after a while, she told me it was done. Dave & Sara sat with her, she sat up, ate a hot dog (Dave had previously gotten), then we went to watch the last 4-5 minutes of the game. This is the strangest thing ever ~ how many times have I said that in the last seven months? She wanted to ride the bus home instead of riding with us. Against our better judgment, we let her, wish we hadn't. She had some issues on the bus, she called it anxiety. It may have been, or the fact that her chest is full could have played a part in her not being able to breathe. Not sure, don't care. Next time, if it happens again, she will be riding with us. Dave & I both stressed all the way from Tipton to Hallsville. I drove her car home from the school before they got back. I knew she would not be happy with that, but oh well. We are the parents. It's our job to keep her safe. (a little funny there, from her childhood!) When she would get mad b/c she couldn't have her way, I would ask her --- Steffanee, what is my job? She would always reply, "to keep me safe"-- yep! that is my job. still.
Here is where the I wonder.... comes in. I started her on Niacin Monday. I read in the Group that it was helping some of the girls, thought I would give it a try for her. Wonder if that triggered something in her body? You all know that as a mom, you feel responsible when things go wrong. Well, maybe not, but I do. When I finish here, I'm going to web md to learn what it does to the body...........probably should have done that before I gave it to her! "mom of the year" again. I'm telling you ~ I will NEVER get that award. Okay, there's our Friday night. Our Saturday was mellow as it could get. Dave went to CJ's and got hot wings, Steff's favorite, Jeff & Char came over for the Tiger Game, fun night. They won ~~ after it looked like they weren't going to pull it off. Steff laid down on the couch downstairs and watched it with us. We all laughed a LOT! After they left, the three of us were watching a movie, they both fell asleep and here I am!
Oh! I forgot, Steff was signed up to take the ACT test this morning. Needless to say, she was not in any shape to get up early and sit all morning to test. So, guess she'll sign up for next month. Here's to hoping things get better again. I'll stop the Niacin, just in case. Any ideas on the Niacin or any ideas at all ~~ throw them my way. We are doing the best we can here, hoping that it gets better. Enjoy your Sunday! Back to work/school on Monday! : )

Didn't make it .....

2009-09-12T17:44:00.002-05:00

Okay, most of you are aware that last night at the Football game, Steffanee had a worse than normal (lately) episode. Not nearly as bad as they started, but she was on the ground through the last half of the game. I know it makes people nervous & freaks them out, but really, we are doing the best we can. No, we don't need an ambulance, we've tried that, they only drug her up & send her home. Coach Crane is completely on board with Steff's case, condition, or whatever you call it. Rubbing her muscles, working them through the spasms, telling her to breathe from her abdomen. She has it. HOWEVER~~~ from this point forward, I will be bringing a blanket to each game. Sorry folks, that we were begging for jackets & blankets. I will have that under control from this point forward. PROMISE! You know how that goes- if you have it, you won't need it. I'll leave it at that. By the way, she's still coughing quite a bit. It's loose, but thinking about taking her in on Monday if she's not over it. In where, I don't know yet........
I'm off to watch our TIGERS. I'll post more later about last night. Thanks VERY much to those of you that listened to me ramble. .. sometimes that seems to help me focus. At least I'm venting away from her. : ) AND THANKS very much for all the concern we felt. This is a part of our life now, and trust me when I say, we are doing the best we can. She's fine today, sore, tired, and the cold thing is getting to her, but other than that, the little trooper is good. Did I say embarrassed a little?