Sunday, November 29, 2009

Sunday Evening......

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.

Saturday, November 28, 2009


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, November 24, 2009

Tuesday~All is STILL good. Leaky Gut LInk

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. 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.

Sunday, November 22, 2009

A good Weekend for Steff

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.

Friday, November 20, 2009

ALL sMiLes today

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.........

Wednesday, November 18, 2009

No Episodes/LOTS of Yuck!!

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

Monday, November 16, 2009

Rainy Monday

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.

Sunday, November 15, 2009

: )

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

Saturday, November 14, 2009

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

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....: )

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.

Wednesday, November 11, 2009

Good Days/No Post : )

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!!

Monday, November 9, 2009

A GOOD Monday...

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

Sunday, November 8, 2009

GREAT day!!

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!!!!!!!

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.

Friday, November 6, 2009

Yes, this is much better.

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. 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!!!!!!!!!!!!!!!!!!

Wednesday, November 4, 2009

We made it ~ on her time....

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. : )


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!!!

Tuesday, November 3, 2009

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

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.