Thursday, October 29, 2009

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

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

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.

Wednesday, October 28, 2009

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

Monday, October 26, 2009

Another day in the ER

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.

Saturday, October 24, 2009

Just one more post today.

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!

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.

Thursday, October 22, 2009

I'm tired....

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!

Wednesday, October 21, 2009


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.

Tuesday, October 20, 2009

hoping I'm on the right path

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..............................

Monday, October 19, 2009


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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sunday, October 18, 2009

Another quiet night....

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.....

Saturday, October 17, 2009

Quiet Nights, No call from DR

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.

Thursday, October 15, 2009

A Link to THREE more girls stories

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:

Dr on the GABA test

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

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. = (

Wednesday, October 14, 2009

I think this is BAD news

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.

Tuesday, October 13, 2009

We should know something on Friday.

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!!

Saturday, October 10, 2009

aahhh...Two good days, almost 3.

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.

Thursday, October 8, 2009

So far, a good day

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.

Wednesday, October 7, 2009

Another UGH!!

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

Tuesday, October 6, 2009


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.

Monday, October 5, 2009

Two down, One to go...

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!!

Sunday, October 4, 2009

More Pix From HC

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

The Four Seniors on Court....

HC pictures ~ : ) Hot Seniors.

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

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

Homecoming Dance ~

Gabi Swank T shirts

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> Best to copy & paste it. The 0 & i in Robrich are numbers.

DR> MARK ~ Simi Valley CA

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.
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!!!!!!!!!!

Saturday, October 3, 2009


Click here to view these pictures larger


Click here to view these pictures larger


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

Thursday, October 1, 2009

ONE more FULL day/night OF homecoming

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

Right after it was announced that she won.

Are they CUTE or WHAT??


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!! : )