Thursday, April 30, 2009

Restless Nights, Tired Days

Steff had another restless night last night. She complained about her back hurting as she went to bed. I put an ice pack on it and she drifted off to sleep. Her muscles start jerking and twitching as she falls asleep, sometimes it lasts quite a while. Last night was one of those nights. She moans and sounds like it hurts, but wakes up and doesn't remember it. Guess this is good. It seems like once she falls into a deep sleep, it stops. Not sure what is going on, but I know those 3-4 nights of sleep felt good to me! I'm sure it's easier on her!! We decided to skip the sauna for her tonight, just in case she is getting dehydrated or something. Always trying to figure it out!
She had planned to attend school this morning and talk to the counselor, but she was very tired. I couldn't get her up. Her home bound teacher came and Steff took a Stats test for her. She felt confident that she did well. We'll know next week. : ) We hung around here all evening, catching up on all the Survivors we had recorded. That's one reality show we have always all watched together. Bonding! LOL
Tomorrow is a big day. She is planning on school again. Counselor. Then decorating for prom. I'll be going with her, so if she starts wearing down, we are out of there! OR she can bring a blanket and I'll cover for her. I'll let her decide~ then I'll decide. LOL She doesn't know her limits yet. I can see her wearing down. She's in bed now. Hope she falls to sleep soon. I'll be praying for a peaceful night and week end. : )

Wednesday, April 29, 2009

On a HIGH note today.....

Steff had another restless night last night, but it is NOTHING compared to where we started. She slept in, then I took her to the Chiro for acupuncture, which she didn't get. The Dr. was very nice, and agreed it probably was the Gardasil. He has seen cases similar to Steff's, but with different drugs. He examined her low back and hips, this is where most of her pain is. He said her muscles in her low back are in tight balls. He didn't want to jump right in with acupuncture, so he did ultrasound on it. Said next time, he will ultrasound again, then do a few pins. He doesn't want to flare up any more pain for her. So, I guess we'll ease into this thing. He does seem to think he can get her some relief. She was very comfortable with him, so that was good.
She did home bound studying tonight. Seemed to go well. I try to stay busy and out of the way while they're working. Steff was happy with what they accomplished. She did homework again today when Ms. Turner left. I'm glad to see that happening!!
On the HIGH note. Yesterday I spoke with a nurse from the Army. She called checking on Phillip (my younger son). Anyway, we got into a discussion about Steff having medical problems. So, it seems she works with soldiers that have reactions to vaccines! That was a WOW moment! She told me to call an immunologist/rheumtologist (sp) Dr. that they can do blood work to find out if her auto immune is normal. I told her Mayo checked for that and it was normal. She stated they probably did a general work up and Steff needs a specific auto immune test. SO, I called them today. They weren't sure what I was talking about, but did acknowledge that Gardasil is causing some adverse reactions. OKAY, I'm 2 for 2 today! Maybe I am making progress. Steff sees the Chiro again on Monday. The Im/Rh Dr. on Wednesday. I will say it one more time, I really hope her test (if they can do it) comes out normal. I really hope it is NOT the Gardasil. I hope it's something they can figure out that is NOT related. I pray for that every day. I do feel, however, that there is more than "stress" going on here! Her muscles seem to work on their own, without her help, they twitch. Not sure that's the problem, but it's new with all this. I told Steff how glad I am that at least someone is listening to me, she just smiled and reminded me that I've been this happy before. Okay, she wins. So, I'll come down from my high until I have more information. : I
Tomorrow she is supposed to get outside SR pics taken, prob won't happen. Too much rain. So that means more rest. This is good.

Tuesday, April 28, 2009

Tuesday PM

Today was a laid back, easy day. Steff slept until almost 1 PM. Yes, one o'clock in the afternoon. I normally would have a BIG problem with that, but I knew she went to bed at a reasonable time. I also knew she did not sleep well last night. Once she finally got up, we did nothing. We stayed home and waited for her home bound teacher. They worked on school stuff for quite a while & when she left, I was surprised that Steff took her homework and started working on it. She seems to have a difficult time concentrating. Either that or she is just completely overwhelmed. Not sure and don't ask. : ) I just try to get her going in the right direction. We ate and chilled after that. She is now in the sauna and said she's really tired. (I don't see how, but, okay)
I made a couple of calls today for a new appointment. I'll fill you in if all goes well.
I will be taking her for the acupuncture tomorrow at 10:30.
Ms. Turner comes again tomorrow to do school stuff. Lucas Photos on Thursday, Prom decorating on Friday, and prom on Saturday. Dance recital on Sunday. I seriously doubt she has enough energy to attend the recital on Sunday, but she wants to. There certainly will have to be a lot of rest somewhere in there! Here's to hope for a restful night tonight!!

Monday/Tues AM

Monday was a busy day for Steff. She attended school first hour, went to do the foot bath, came home for a nap. ; ) then went to work on the dance for cheerleading. She was very tired last night. I'm thinking baby steps, she's thinking she's missing out. Sunday and Monday nights were restless nights for her. Not sure what is going on, dreaming or her body acting out. But either way, she can't be resting as well as she should. Today she has homework to do and her homebound teacher is coming at 4:45. She is still sleeping. Rest is important to heal.
My work. ; ) She has an appointment with Advanced Chiro on Wednesday morning for acupuncture. This is all new to us, so I'll keep you informed on what we both think about it. I did call BC/BS 24 HR nursing hotline to talk about the Gardasil. The only side effects they have are the dizziness, soreness at shot sight. We talked for quite a while, she said she would request they update their source. I'm sure if moms knew to watch and listen for soreness of muscle and joints, they wouldn't go back for shots 2 & 3, if their daughter was complaining about their muscles and joints like Steff did. I had NO clue. I know several girls that have gotten the shot and have not had a problem. I also email with parents of girls that are having problems. I think it it more about being completely informed. I won't get on a roll. I'll just leave it at that.
Steff did her sauna time yesterday. She doesn't complain, but does put it off until just before bed. I would think the sauna, shower would help her sleep sound. Maybe it will in time.
I'm off to get a few things done this morning~ will try to check in this evening.

Sunday, April 26, 2009

Earth Day was fun! Hot, but fun. Lots of people and lots of peace signs. We went about 1 and just got home. Steff and I went from Earth day to Boonville. We haven't been in quite a while, with the hospital visits and all, we've been pretty busy. We didn't stay too long at either of the houses. Steff is very tired and her back has been aching most of the day. I hope I didn't over do it with her today. I believe that's the most amount of time she's been out and moving. Keep your fingers crossed, b/c I AM! She's in the sauna now, then moving to our big tub to soak in Epsom salt. She has homework to do, then off to bed. I'll be praying for a quiet night. AND a quiet day at school in the morning! I'll be there somewhere walking for exercise and to be close ~ just in case. I like to have a plan you know, but I am thinking positive! Exercise is good! (ugh) I guess.
I have a ton of phone calls to make when we get home. I need to touch base with our insurance on acupuncture and how to file the bills that the medical places wouldn't file. Besides other things. Prom is next week end> Steff is counting the days. : )

AHHH.... Life Is Good.

Okay. I KNOW I'm the up when things are good and Down when things are bad girl. BUT, I must say, LIFE IS GOOD. Another uneventful day and night. I think I am beginning to remember what a full night of sleep feels like. It has to be GREAT for her body too.
Here comes the Debbie Downer... you know my wheels are always turning. : ) We are making sure she is getting plenty of rest. She is SO excited about prom. I really hope that one night that she has looked forward to for so long doesn't THROW her body out of balance. I'm sure as parents you all know that she is wanting to attend an after party. At this point, we keep saying, we'll play it by ear. Well, it's almost here and ugh! Things are going good, hate to upset the cart. BUT I also know she just wants to be a normal teenager, not a sick one. We'll see. I just had to get on and BRAG about yet another good night. It feels good to see her happy, smiling, kind of like that kid I remember. Not there yet, but I can see progress being made. Time will tell.
She will be attending school for a first hour class in the morning, then going to chat with the counselor after that. I think she hopes to do that at least once a week. Hope that makes her be nicer to me! LOL We are heading to Peace Park today...can't's Earth Day downtown!!

Saturday, April 25, 2009

Another good one....

Almost hate to say it, but it has been THREE peaceful days and nights. Of course, with adequate rest, lots of distilled water and detoxing. I'm not sure what is making the difference, but don't even care. We will continue to do it all. I think I saw that little sparkle in her eye for a while today. ; ) Dave & Jeff got the sauna, put it together and she spent her 20 minutes in it this morning. She's almost ready for her 20 in the evening. She also took an Epsom salt bath in my big tub today. I tell you, I am determined to get this child WELL!!!
I got a call from Advanced Chiropractor, they do acupuncture AND they take Blue Cross and Blue Shield. I'll call our insurance on Monday morning to see if they cover that sort of thing. I'll still take her. From what I've read, I understand it helps with chronic pain and detoxes. I'll learn more from them when we go.
Earth day tomorrow at Peace Park. We are planning on going. Life is Good.

Friday, April 24, 2009

Good, but gross news ; )

It's Friday!! I have good news, gross maybe, but good! Today I took Steff to the tanning bed, (I know, I know!) BUT the good news is..... she said she sweated really bad in the bed. To some this may be Gross ~ but to me, this is very good. At least she is sweating again. Yeah, I'm sure she will be proud to read that and share with everyone! LOL To me, though, it is just one more good thing to share. Baby steps.
I almost hate to say it, but she had another good night last night. She slept sound. Two nights in a row ~ that's the best she's done in quite a while. However, tonight is Friday, which means later hours. Hope we can make it three in a row! She had kind of a rough day with her back. I took her to the Chiro, which usually gives her some relief, today he did not. SO, I called the ped ortho to ask for anti imflammatory meds. IB s are what they recommended. That's fine, but they seem to upset her stomach. We'll try it. I also switched from heat on her low back to cold. Who knew?? I guess it depends who you are talking to about it! So, ice it is!
Her home bound teacher came today. They worked together and made a plan. This seemed to go really well. Steff was very happy with it. : )
I tried calling today about the accupuncture today, didn't have much luck. I got mostly answering machines. Will try again on Monday. I would like to find someone that takes our insurance. But will settle for one that doesn't> just feel it might help her. Okay, I'm outa here> enjoy your Saturday!! Rain and all.

Thursday, April 23, 2009

Thursday.....a GOOD day.

Today was a good day. I took Steff to school during her advisory class so she could socialize with friends & teachers. That put a smile on her face. I know she misses being a part of the school day. We went from there to do the foot ionizer at the Tropical Getaway, then we went to check out the sauna Dave found at RiverMist. I was impressed with it, and we made the decision to go ahead and purchase it. Steff promised she would use it. Dr. F said 20 min. in the morning and 20 in the evening for good detoxing. Against my wishes, it will be going upstairs in the toy room. He thinks it will more available for her if it's close to her room. So, the toy room it is. When she is much better, it is easy to take apart to move downstairs. ~ That's where I want it. : ) I'm kind of excited about getting it. We had discussed this before our last ER visit and visit to Mayo. So, it was a plan in progress. I hope it helps her.
Steff slept sound last night~ very sound. I couldn't budge her over for anything. LOL I'm thankful for the quiet nights~~ it helps to keep my stress level down. ; ) Really, it does.
We had company again today. Seems the chili supper was QUITE the success! Oh My Gosh. I was shocked and amazed. Thanks very much to everyone that participated, helped and ate chili!! ; ) We live in a GREAT community and have LOTS of great support. I can't say enough, but again, Thanks SO Much for supporting our daughter. It means a lot.
We are still taking this one day at a time. Today was a good day, all the way around. I'm hoping for 2 in a row. This would be good! Steff will still be doing the home bound school plan, we are new at it, so we have a lot to learn. I am hoping next week to ease her into class, slowly. Dr. #1 said 1 hour a day until we see how she tolerates it. So, we'll try that next week. It's all about getting her better and back to ole sassy Steffanee!! Thanks again for all the support.

Wednesday, April 22, 2009

We are Home......

Hey! We're home! ; ) Guess that means I probably should cook or something. Steff had a good trip home, she slept most of the way, truthfully, so did I. She had a rough evening last night when we went to bed. We survived~ guess that was a message that this isn't over. You KNOW me, I"m the up and down girl! I guess Dave is going to check more into getting a sauna for the house tomorrow. Maybe if we can get her to sweat some of the toxins out, it would help. That's where my brain is. Sauna in the AM, Sauna in the PM. I'll be looking into other things tomorrow. She needs to call Lucas Photo and reschedule her outside shots> that will be fun. Hope we get to do that this week, we'll see. I'm off to spend time with the family and kitties~ THEY are really glad we are home! Have a good one.

Tuesday, April 21, 2009

Our Last Day in MN~revised 7:27

We will be on our way home bright and early in the morning. I really miss my kitties, friends, family, you name it. Steff and Dave are pretty much the same. Seems we haven't been home much since Jan. ~ at least it was Jan 2009!! LOL
The MRI went well for Steff, it was only 30 min, luckily. Her feet started moving toward the end of it. It's hard for her to lay for any length of time in one position. It's done. DR#1 was supposed to call with results, it's after 6, haven't heard anything. The word is prob normal ~ ah, Dave just called, it is normal. Normal. I'm beginning to wonder what that really means. I'll research that later. ; ) Frustration will be my research after that.
My little brain has been on overload all day, as many of you know. I have a 17 yr old girl whose world was turned upside down on Feb 2, for no apparent reason. I am glad to report that the twitching and jerking her body does is now limited to sleeping time. This is good.
Not sure it will stay that way, but there's another thing to hope for. She has gotten lots of rest here. We walked and talked quite a bit today about the situation. We will have to arrive at answers that work for all of us. I won't push today or tomorrow, but will continue to be open with her on our decisions. Any nurses or DRs out there with suggestions, shoot them over~ at this point I feel we have exhausted traditional medicine and will have to search other options. I am certainly OPEN to new and fresh ideas. I will follow up with Dr. F, with the hair anaylsis. Dave just wanted to check out one thing at a time, so that's what we have been doing. I'll get back to reading, researching and seeing what is working for the other girls and moms that have also found this little duck. ; )
I'm back on the loose> with a smile on my face. I do feel that Steffanee has gotten better since Feb 2. and with the biofeedback, things should improve more. I also feel that with the fight in her, we will get there it's just going to take time. Here's to her drinking tons of distilled water, doing saunas, getting plenty of rest, eating healthy and checking out that new beginner Yoga CD we borrowed. Sounds like a plan to me. ; ) See many of you tomorrow. Love Ya!!

Monday, April 20, 2009

Here's the diagnosis...the way I understand it

Okay. Here's the diagnosis as I understood it. First off, all her blood was normal. Yep, normal. Her urine was normal. Yep, normal. All testing has been normal. We get the MRI of her spine done tomorrow, they did her head today. I'm guessing it will all be.......yep, normal. They did test her blood for auto immune and it was normal. I was glad to hear that. Seems like that is a problem with the girls I have been reading about. There's that duck.

So> we have a normal girl. BUT not really. Since all testing is normal, DR#1 has decided that Steff has had inflammation & pain in her muscles and joints for so long, probably from the Gardasil (DR said it, not me!), that she is having stress (that LOVELY word) brought on by wondering what is wrong with her body and why does it hurt all the time. WHICH, in turn, brings on anxiety, which continues to accelerate b/c she doesn't know why her body continues to ache and hurt.
Okay. I'm on board, so is Dave. Steff, on the other hand, is confused. I explained to her that this is real. No one is saying she isn't having real physical problems. The good news from DR#1, this will go away in time. More good news from DR#1, we will wean her off all these meds, starting today. Steff then went for a biofeedback appointment to learn how to control the pain and muscles when they start coming on. She has the MRI tomorrow, we thought about coming home after that, but not sure how her body is going to handle her laying on her back all that time. Would hate to get on the road with her uncomfortable. SO, it looks like we will be leaving here on Wed AM. Will be in touch with some of you on Tues PM or Wed AM. ~ teachers, school, work, you know, those kind of things that we've missed out on this week. : )

My plan? I plan to stay positive with this. Don't necessarily buy stress, but get it. I do get it. I will feed her the minerals and vitamins I purchased from the holistic DR~ what can it hurt, they are all natural? We will pay close attention to what her body needs, sleep, good food, etc. I'm going to try to get her into the sauna & a couple of massages. It does seem like this trip has helped her. She's had more rest than she's had in a while. She still had quite a bit of jerking in her sleep last night. SO~~~~Do I think it's over? No, I wish I could say YES, but I can't. I'm off work for 1 month, hoping to ease her back into school, with this home bound studying. We will schedule a meeting with the school when we get home. I had really hoped they would have said "this is what's wrong" & "give her these pills for a week and it will be gone" I wish life was that easy! It's not, so, we continue to pray and wait. Maybe it's the praying that's making her better! Day by day, hour by hour. and life goes on........

One thing I forgot...AGAIN, please don't question Steff about what is going on, she is trying hard to understand it, but not sure she is ready to openly discuss it. THX

Sunday, April 19, 2009


Hey! It's Sunday! Not much going on here. We slept in and are taking today easy. Have to be at the hospital at 8 in the morning. I'm doing wash at the hotel> that's a first.....EVER! It's washing, and I'm waiting. Mostly Dave's work out clothes> the room was smellin' bad. : )
Steff seemed to have a good night. I know it wasn't a bad night b/c I slept through the night and I was in her bed. I would say it was a mellow evening and night. They watched Harry Potter, Dave hasn't seen them. I hung out down here most of that time. Searching and reading. Planning on today being a lazy day, then back to it tomorrow early. Will keep you posted as I learn more.
Have a good Sunday!!

Saturday, April 18, 2009

Saturday~ DRs day off

Hey! Nothing happening today on the medical field. Steff did have a peaceful night last night. A small, controlled episode, but then went to sleep. Of course, Dave had given her 2 benedryl in hopes of her getting lots of rest. We are thinking if that little body gets rested up that they might happen less often. Taking care of the body so it acts right is important. I'm positive this even applies to this little troopers body~ going through all this. We're feeding it> her appetite has not slowed down. She doesn't get much rest, but once she is finally "out" it's hard to get her up and around. Hope tonight is a smooth evening as well.

We did go to the Mall Of America today. Pretty impressive. They had at least ONE of every store you could imagine. We did not take a wheel chair, and did not have to carry but 2 medium bags. When I packed for Steff to come here, I was in the hospital mode. I packed all shorts, sweats, and T shirts. Today she purchased a pair of jeans and 2 shirts for the appointments next week. NOW, you all know the child needs clothing. LOL I'm sure she feels better being dresses like she normally dresses than in the lounge clothes I packed. She hasn't complained or griped at me for the packing though. She just shakes her head when she gets dressed. I just wanted her comfortable~ not fashionable! Dave was a trooper today at the mall. He's a GREAT guy ~ for those of you that don't know. And watching him with her warms my heart. They've always been close, but this is different. Sometimes I think I've lost my spot with both of them. ha

Not really, well, kinda. : ) What doesn't kill you will only make you stronger. At least that's what they say.

I did understand DR#2 to say that DR#1 will be weaning Steff off the meds she has been taking. The keppra seemed to help in the beginning, but since she's been getting worse instead of better, she wants to stop them and go from there. Will know more on Monday/Tuesday. I do have a good feeling about DR#1. But I'm still praying for someone to open the door to her healing. Hope that's her!!! : ) Enjoy your Sunday!

Friday, April 17, 2009

It's STILL Friday..

Hey> We finally were let go from the hospital. I told Dave it was feeling like a hostage situation. lol Another DR came in and talked with Steff. They chatted about ways she can help herself through these episodes. He gave her 2 CD's on relaxation. We already have 1 from Kate & Sandra. Healing Waters~ I love it. He also was teaching her about breathing from her diaphram. I'm assuming it's like "finding your center" in dance. Correct me if that is not a good comparison. She listened and I'm hoping this helps to mellow things out. I know it won't happen over night, but I hope it helps. Regardless of what is going on in that little body, coping techniques are good for anyone. I'm thinking this is a postive thing.
Not overly impressed with DR#2, guess you all picked up on that. : ) We "chatted" for quite a while today. Did I say chatted? Call it what you want. Perhaps, debated? Doubt we would be friends in real life. HA! I respect her knowledge and education, but prob not her presentation. I didn't tell her that. Personally I think she needs to work on a little bedside manner. But hey> who am I to her? LOL Wait> I'm the MOM, the one paying the bill. : )
Dave keeps reminding me that we have driven a long way for their opinion, so let them do their job. (other words..STOP TELLING THEM IT'S THE GARDASIL.) I really don't think I tell them that, I just simply throw it out there. Simply a suggestion. Simply my point of view. I really would like it to NOT be it. But at least look to see if it is. AHHHH! I said I was not going to do this. I'm done.
I want to stick with the positive things we are learning here. We are here to learn and make her better. Sorry. Guess since he doesn't want me to voice it there... I'm wanting to voice it here! LOL Did I say in my "about me" that I don't have strong opinions?? I lied. When it comes to my kids... guess I do!! HA.
We've had dinner and are planning on a nice relaxing evening. We've watched a lot of movies! I think Mr. Dave is giving into the Mall Of America for tomorrow. Here's the deal. Since it's a big mall, he wants to take a wheel chair. She balked. I said> hey girl! AGREE> that way we will have somewhere to put our packages! : ) I'm a happy woman tonight! I'm off to spend time with them in the room. Think positive thoughts and keep her on your prayer list, please.
Bocky74-shoot me an email, please. You made me smile. I'll explain to you about detox. Sounds much easier than it is, esp since she's 17 instead of 12. She was easier to boss around at 12. : ) BUT TRUST ME> I'm working on a detox plan that doesn't look like a detox plan to her!

It's Friday...

Hey! okay. We found out today that we will be here until at least Tuesday PM. Her last DR appointment will be that afternoon, not sure what time yet. She finishes her tests on Tues AM, then we follow up with the DR to get all the results. At least that's what I get. Her EEG w/video was normal naturally. Normal. I mean, it's good her brain is okay. I just hope something shows up, somewhere. She gets her MRI on Monday & Tues AM I think. We are still at the hospital, waiting for the biofeedback DR to get here. He will teach her how to handle these muscle things. How to make life easier for all of us. This in itself is important, b/c we are at a loss as to how to help her. We will be here in the hospital until the DR makes it over here to see her. It's a beautiful day outside, hope we get out to enjoy it when he's finished. If not, tomorrow is another day. Steff is begging to check out the Mall Of America> we all know that looking at stuff is not her thing> she's like me....she likes to buy. I keep reminding her she has that debit card! : )
If we make it, fine, if not, fine too. Probably the closest we will be to it though. We'll see. Dave is NOT a shopper of any kind. He runs in, grabs what he went for, and he's outa there. DEF not our kind of shopping! LOL
Hope to report more later. So far, pretty happy with this place. I was happy at the University too! I would be much happier if we could figure this out........later

Thursday, April 16, 2009


WOW! Last night was a long one. She just CANNOT lay down without this thing taking over her little body. I hate it! Today she is in the hospital, getting an EEG with video. She has had 2 episodes since they hooked her up. They took a TON of blood this morning early. She passed out. I heard her telling the lab tech that she was getting used to giving her blood, they called some code and the next thing you know, the room was full. She then went to the ER for observation, then to this private room. Busy day! We had a couple of different doctors this morning. They asked a ton of questions, naturally. I did throw in the fact that this was a very active normal teenager prior to Feb 2. She asked me if anything had changed in her life to start this> I did tell her the Gardasil shots. She said she doubts that is what this is. With attitude, I might add. As a mom, I really feel that is it. After I've read all the other moms blogs and reports, it makes me believe it more. The seizure like episodes, muscle spasms, all tests coming back normal, severe low back pain. There are a LOT of parallels with Steffanee and the other girls. I really don't know why the Drs refuse to recognize that. What difference would it make? I don't want to sue or anything like that, just fix her, bring back my active girl. The one that can lay down and take a nap anywhere, anytime. The one that used to laugh all the time and have fun without worrying about these stupid episodes. Okay. I'm done.

Seems we have more testing tomorrow. The MRI's of her head and low back. She has another appointment on Monday. So, we will be here for a bit. I just hope they find something that has been missed. Something that can be balanced out, fixed or however you want to call it.

OH! I almost forgot! I know you guys know that I will never get mother of the year.It's a joke with some of us. Sometimes I JUST don't think........okay,most of the time. Anyway, I was sure that getting her in the hot tub would be a GREAT idea. Relaxing, mellow, just sit and chat. She finally gave in, after a lot of begging. Dumbest idea ever! Are you all there yet??? Because I sure didn't think of it. If she has an episode every time she relaxes, what in the world would getting in the hot tub do to her?? You got it! A few minutes after she was in, she said her muscles felt kind of strange. (they were prob doing that dance they do - all on their own!) I convinced her to just try it a little longer. She didn't stay long, and when she got out, that walk had completely gone south. I guess relaxing in a hot tub is not a good idea! ugh. We made it back to the room, she had a little struggle, but not a full blown episode. I felt dumb, guess I should have given that more thought! Dave naturally said he thought of it. Bet not! LOL

She's still sleeping. She doesn't get much sleep at night. The child life specialist brought her in this laptop to use. She was on Facebook for quite a while. She then gave it to me, while she took a nap. A nap. You will never see her try to take a nap anywhere but in a hospital. She just won't take that chance.

We got word that Ms. Becky Turner might be her home bound teacher. This made her smile big.
I think they really bonded through the episodes she had in her room. I personally think Ms. Turner might have missed her calling. She switched to nursing in a flash, and did a fantastic job. Nursing is NOT my calling. I admire those that have that special touch!! All the nurses at the University had that touch. Of course, by our third visit, they all knew her and wanted her to get better. Okay, I'm rambling.......I'm outa here, to watch her sleep some more.

Wednesday, April 15, 2009

We're HERE!!

We got started later yesterday than planned. I had few things I had to wrap up before we could leave. We gave Steff 2 benedryl before we left, she slept pretty much the entire way here. Those of you that know me will be VERY proud to know that we drove all 7 1/2 hours with out ONE pit stop! I didn't want to disturb her resting, but I was full! I was running into the motel room! LOL It was a very mellow ride, we both slept, Dave sang and drove. She had a difficult night, trying to go to sleep. Motel is very nice and close to Mayo. They have a shuttle every 30 minutes. All is good.
It's Wednesday, we saw the Dr. very nice, patient, and easy to communicate with. She spoke mostly with Steffanee. (good thing for her!!) LOL She did more extensive testing with the motor skills than I've seen. Steff was fighting off an episode the entire time we were in her office. Seems she is an epilepsy specialist. Whatever...we are here, willing to see who ever it takes. She took the CD of the episodes and watched it, asked to share it with her colleagues, I told her to keep it if she thinks it can help. Steff has blood (with fasting) and urine tests scheduled at 7 AM, then a video/EEG at 9 AM, and an MRI of her brain and low back scheduled too. Not too sure of the days or times, but think we will be here until at least Monday. We also have a DR appointment scheduled with another Dr sometime in there. Dave has the schedule, you know> MR. Early man! Steff and I are trying to catch up on our sleep! Well, really, I am. After her appointment today, we had lunch at Quiznos and headed back to the room. She pretty much struggled with the fight until we chilled in the room. Her walk really went south.
That's pretty much our day and I'm happy to say they have 2 computers in this motel office! Seems like tomorrow is full, but will try to post when I get a chance. Bad news for Steffanee, they blocked facebook in here. Probably thought they would never get her out! JJ

Monday, April 13, 2009

MAYO Clinic on WED

Hey! I'm blogging at the hospital, will be short, can't leave her alone but a minute. We will be leaving in the morning some time for Mayo Clinic in Rochester Minnsota. I REALLY hope they can help her and fix her. She has been having a LOT of episodes in the hospital The trip up may be challenging, but we will get through it. Not sure if I will have access to a computer there, but will if I do, I will certainly blog> for myself and you!! : ) She is excited and scared at the same time about the trip. Keep us in your prayers ~ Thanks to all.
Road tripping again ~ music blaring ~ right down our alley!!

Round Three

We took Steff to the hospital again on Sat. evening around 2-3 AM. They kept her and we're still there. Dr. Hussein came and spoke with her on Sunday for quite a while. She passed the test, seems she isn't suppressing anything. (for the FOURTH time!) Dr. Patel will move on now for sure ~ hoping to the Gardasil side effects and figure out how to fix this, while we are waiting for the Mayo Clinic. He is calling this morning to let them know this is an emergency. And an emergency it is> I cannot keep watching her eyes roll completely back into her head. Besides, her eyes are sore and burn all the time now. NOT to mention the rest of that little body.
I just wanted to touch base, I'm off to work. Dave and I are doing the hospital stay different this time. Instead of both of us staying all the time, we are rotating. I spent the night last night ~ but didn't get much sleep, Steff had a very VERY restless night. Anyway, I'll blog again when I get a chance. Just wanted to touch base ~ no visitors please. We want her to rest and let her body get some rest ~ it has to be VERY tired. Prayers are good. : )

Saturday, April 11, 2009

YET, another LONG night....

Oh my gosh. Wait! Positive things first. We had company yesterday. Sounds like a fundraiser is in progress. It sounds very organized. We appreciate all the love and concern coming Steffanee's way. Although she doesn't "get it" at this point, she will later. She's just 17, she thinks we are rich. LOL But, really, I think she does. : ) And to her, maybe we are. Gotta LOVE her. That's MY girl. Do I need to mention how spoiled she is? LOL
I just want to put it out there that (I KNOW YOU ALL KNOW!) as a parent you just do what you have to do, you don't "think" about it, you just do it. Every minute of every day is consumed with getting her better and figuring this out. Thanks to everyone, I am sure this will help on the stress level, when we get "there". Financial is the LAST thing on my mind at this point. It always works out, one way or another. We do appreciate it very much.
Okay. Yesterday was a good day for her. She ran to the mall with Laney, and yes, I wasn't too far behind her, looking for Kendell a prom dress. : ) She called and met up with us after a bit. We all laughed a lot ~ like old times. Silly girls laughing over dumb stuff, all FOUR of us. Everyone knows we have some sick kind of humor. Oops! I mean "dry". She had a good evening too, more laughing and giggling. Then came bed time. The MUCH dreaded time to relax. Seems like she has narrowed this down to the fact that she has to stop fighting it and relax. That is when it takes over. I REALLY thought we were going to be event free. I was laying there thinking - wow! just one night of rest for all of us would be good. One night that her little body didn't jerk would be good. Wrong. It was totally different and it scared me more than ever. I'm not going into it, but I will say I called Dr. Patel at 3 AM for help. Dave called him again this morning at 10. He says he can't call Mayo until Monday. I say call today! Leave a message! WHATEVER! JUST DO SOMETHING! My wheels are turning in the meantime. We have an email address to the ped neu receptionist. YEP> I'm emailing her today with all the facts that have changed. It will be there first thing Monday morning. I think I can get my point across. You KNOW I can. LOL
If she is still having problems this AM, or whenever she gets up, we will head right back over to the ER. She feels safer there anyway. Dave is so strong and good with her. I, on the other hand, have started breaking down and leaving the room. Today I will have to make the decision to stop that and be strong again. How long have we been doing this now? Feb 2-April 11, or whatever day it is. It hurts to watch your child hurt. It hurts even worse to know that this was something I made the decision to do. The duck again.
I will tell one thing that happened at Gerbes yesterday. We were standing in line to check out, I noticed her shaking (not twitching) her head and closing her eyes tightly, several times. When she opened them, her eyeballs were all over the place, she said they burned. It looked like her eyeballs were quivering. It scares me. Something is not right. Like how many times have I said that? I just want someone to help her, us. I love her SO much and this is SO hard. I know we will be stronger when we get through this~ BUT let's get there already! Okay. Pity Party over. I'll get in the shower, pray for that peaceful feeling to wash over me and be strong again. I'm not giving into this, but let me tell is very hard to watch her hurt and not hurt with her. Here's to hoping she wakes and doesn't remember much about the night. Here's to hoping today is yet another fun day. We are going to pick up her prom dress after lunch. That will put a smile on her face. I'm supposed to get a haircut, but we'll play that by ear. I NEED it, but she comes first. Keep us in your prayers. Pray for a door to open for someone to recognize this and be able to fix it. We want our little girl back. I'm off to get that warm feeling!
By the way> If you happen to see Steffanee, please don't ask how she is doing or what is going on. Just treat her like you used to ~ give her a hard time about anything you used to. She likes that. She just wants things to be normal again. Don't we all. I'm out for sure!!!

Friday, April 10, 2009

Good Friday...

~~I ended having to pick Steff up last night. Not because she was having problems, but b/c she decided to go hang out after the late movie. Not happening. When we got home, I noticed her head doing that twitching thing. She ignored it, washed her face, brushed her teeth and got ready for bed. I asked how long it had been going on, her answer was "for a little while". She got out her ipod and climbed into bed. She knew what was coming. I'm not sure how long she had to fight it. She sang with the ipod as she tried hard to ignore the jerking. I smiled at her, but it was hurting my heart. She was acting like it was no big deal. She rolled over and gave me an ear bud, so we listened to the music together while she ignored the episode. One hour later, her body finally gave up. I have to call her a little trooper. She put her head into the music and only whimpered a couple of times. It stayed under control. I did, however, give her that pill as soon as she walked in the door. That prob helped keep it at an hour. Usually after she takes that pill, it lasts a while, but it puts her to sleep. She slept sound until this morning.
I called Dr. Patels office. Seems he is sick and not in a full day. I expected to hear from them, but didn't. Maybe on Monday. I hope and I hope it makes a difference on the time line.
I found another article on Gardasil side effects, I'll attach it at the bottom. It's starting to scare me more each day. I know we don't know for sure, but it looks like a duck and sounds like one. She has started something new with these episodes. We can't understand her. She talks jiberish of some kind. Sounds funny to say, but not so funny to listen to while you are trying to help her. It's over and over and very hard to understand. Strange, I know. I'll paste the stuff from WebMD and sign off - she's staying home tonight. Let's pray for a quiet one. : )

Reported Adverse Events From Gardasil: WebMD
The CDC and FDA monitor adverse events reported in people who get any vaccine, including Gardasil. All those reports go into the Vaccine Adverse Events Reporting System (VAERS).
The 7,802 adverse events reported to VAERS for Gardasil include 15 deaths and 31 reports of Guillain-Barre syndrome, a potentially paralyzing, life-threatening condition in which the body's immune system attacks part of the nervous system. Reports through April 2009.
But the VAERS data doesn't tell the whole story, notes John Iskander, MD, MPH, the CDC's acting director of immunization safety.

Thursday, April 9, 2009

Someone knows something somewhere....

Below is a link to Mayo Clinic's site on side effects of Gardasil. I know I sent this out earlier in email, but I wanted to post for people I don't email with. I find it very interesting. Ms. Kathy, you did a good job!

Okay. My sister sent this to me today. The article is dated 04/09/2009. Read the side effects (prob just released, b/c I have not found this anywhere and I have been searching everyday) Steffanee's side effects are on there: Severe low back pain, fatigue, joint and muscle pain, Anxiety, muscle spasms or jerking of all extremities, muscle weakness, sudden and progressing, Irritation (big time), Nausea. I'll just stop there. Most Drs tell us moms that our daughter have too much stress. Looks like someone is realizing there is more to it than stress. I'm glad it's from Mayo, maybe they will have a clue on how to reverse it. I am REALLY hoping they pull this out of the medical summary we faxed to them. I hope a RED flag goes up with someone there.
After a rough night last night, again, she had a good day. She's been working on her homework. She wanted to go the movies at 9 for a late show. Neither Dave nor I wanted to let her go, but we gave in. We both are sitting here hoping we didn't make a bad decision. Who knows what the right thing to do is? I'm sure she gets sick of just sitting around here. Being around her friends is important for her mental health, if you ask me. However, Dave says if something happens while she's out, we will look like the worse parents EVER. Yep, he's prob right. But again, how do you know what is right? She's with Laney, who is very aware of what is going on and I truly believe she can handle it. I'm sure she would call us> 98% sure. I am aware that Steff is her friend, not me. She's been gone an hour, we're halfway there. Do I sound like a mother hen or WHAT??? I swear, I was not like this before. Well, maybe a little protective, but not a hoverer. LOL
Dave called Mayo today and stated that this is pretty much an emergency with these episodes. They told him to call her ped neur and ask him to call to speak to their DR. and maybe we could get in sooner. Dr. P was out of his office today. I really hope he works tomorrow, gets it done, and we can get moving on this. The CD should arrive there by Saturday. Maybe once they "see it" , they will realize what she is going through. I'm off to get a few things done, to kill time, another hour and she'll call, then come home. : ) and hopefully, life will be good. We're planning to give her the ativan (I think that's it) as soon as she gets home, then lay down and watch a movie. Hopefully she will fall asleep relaxed and sleep all night, peacefully. Enjoy your Good Friday!!!

It's well after 2:30 AM

It's well after 2:30, she just got settled down after a difficult episode. I CANNOT keep doing this until May 5> I DO know that. My heart will not be able to last that long. As soon as she passes out, it starts. Tonight we were going to try to give her the pill that goes under her tongue, BEFORE it started, but it was too late. Dave says he'll do some calling tomorrow. Yes, he is more mellow than me, but his heart is broken for sure!
I have to work in a few hours, so I'm off to try to settle back in. I pray the rest of her night is peaceful. She had a fun night, but a rough bedtime. Be thankful she had a good evening I guess.

Wednesday, April 8, 2009

Wed PM

Okay, I'm a little mellowed out now. Still not happy about May 5, but Gina has convinced me that it will be alright. Perhaps someone will reschedule and make an opening. Shawna, my nurse friend, is mailing the video of Steff's episodes to Mayo, hoping they realize how difficult this is on her. and us. Don't really know if it will make a difference, but at least they will be familiar with the episodes and we won't have to try to describe them. AND it's not like I can say, "Steff show them what happens." I'm glad I have it on CD, I won't watch it or put in on our computer, but it will be good for them to see what happens. Another piece of good news. The Ped Orthoped that I took Steff to asked about her, and my dear friend Holly gave him an update. He also wants the CD so he can share it with all his doctors to see if anyone anywhere has seen anything like this. I believe he is beginning to realize that it just might be the GARDASIL. I feel like I'm making a little progress, or maybe I'm getting some medical help in my corner. REALLY, all I want is for her to get better.
She went to the baseball game tonight with Laney. Yes, I went also. I'm just not ready to let her go, in case something would happen. The not being able to breathe during it concerns me a LOT!
BUT I know you all have read that several times and get it. I'm sure people that don't understand what is going on, look at her and think she looks fine. If they knew her though, they would see a dull face and sad eyes. She still smiles and has fun, but it's always with her. and so am I! LOL Oh well, it is what it is. We decided to do the home bound thing for her education. That way she won't get so far behind or have so many days against her. She seems fine with it. Probably a little relieved not to have to fight off the episodes or worry about having another one at school. Besides, we'll save money on the ambulance rides. (joking.) Here's to hoping she has a peaceful night tonight.

Wed AM

Wow. I should know better by now to brag about having a good day. That said, she didn't have a good night. As soon as she fell asleep, she had one, and not a small, jerking one, but one that made her cry hard. It was breaking my heart.
Dave got in touch with Mayo today. May 5th is the best they could do. I'm calling Dr. P's nurse to see if they can email the video to them and see if that helps. If not, guess we'll wait. That's after prom. Bummer. I got a call from the school yesterday about schooling her as home bound. I thought she would totally balk at it, but seemed like she was okay with it. I'll get the paper work started, then let her make the decision.
I"m at work posting, b/c I am SO frustrated again. May 5 doesn't sound that far away, unless you are dealing with these episodes and a 17 year old girl that has her life on hold. NOT to mention the pain she is in. Oh well, I prob need to eat some lunch~ I'll post more this evening, if I get a chance.

Tuesday, April 7, 2009

Today was a good day.

Hey! I just read the 1 comment on my blog titled WOW. It's about a girl that is having similar symptoms as Steffanee. If you have a minute, check it out. I plan to call the mom as soon as I'm finished blogging. Steff had a good day today. She's tired, but at this point, that's normal. She's sitting in the middle of the living room floor doing homework. Her art project looks fantastic. She's excited to take it to that Art teacher. She's proud of it. : ) The odd thing with this medical mystery is if you came over to our house today, you would have no clue that Steff is sick. She has learned to deal with her pain and put it out of her mind. She hurts most of the time, but tries to keep going. It's the fatigue that gets to her. She had a bonding day with her dad today. They went out running around ~ usually it's Steff and me running around. I went to work>>> ugh. Long day. I worry about her a lot when I'm not with her. I know Dave loves her and does a good job, but I worry about her. Everyone knows he is a mellow personality and I'm more excitable. That said, you can understand why I worry about her. I plan to work the rest of the week and let them have together time. Dave and I made that decision since Steff has been so angry with me over the Gardasil shots. It might be better now that she has gotten it out, but we had already made the decision.

I called Mayo again today. Nope, can't wait for them to call me. I want to get this child straightened out ASAP. I didn't find out anything, was told to call back around 8 in the AM. Dave will have to do that. I will keep calling. I read that email tonight on the Chillocothe girl, she couldn't get into Mayo until late April, seems that article was written early in March. I really hope we don't have to wait that long. We'll have to find somewhere else to go. I'm going to think positive and hope we get in either late this week or early next week. I'll keep calling too!!

One thing I keep forgetting to mention, the 24 hour specimen was NORMAL, of course. That's about all I know today. Remember to read the comment on yesterdays blog. Interesting.

Monday, April 6, 2009


It's Monday. Steff was released from the hospital on Sunday. She was on facebook and the computer most of the evening. I'm guessing she was catching up. LOL I couldn't get on to blog. Then when she finished, she was pretty bummed out and sad, with the whole situation. So, she asked me to lay with her. I did. She had a medium to mild episode once she fell asleep. I put the pill in her mouth. It didn't last too long. She has been good all day. A little in a fog from the meds, but no episodes. She did release quite a bit of anger today. She's very angry at me for taking her for the Gardasil shots. She refused to get out of the car when we got there. It was a struggle to get her into the office to get it. She cried when she got the shot and I laughed. I laughed b/c she is so dramatic, and was carrying on like she was 4. I had NO clue what we were in for. I'm angry with myself for not doing my homework on the vaccine. I'm glad she had her little outburst today, it explains why she is SO angry with me ALL the time. She also told me that's why she doesn't trust the holistic information. It's not about the information, it's about trusting the decisions I make. We chatted it out today. I hope it helped her. I can apologize 500 times, but I can't take it back. I feel bad about it myself, but I didn't know.
After the drama, she came to me and said she would try the sauna, but if she was uncomfortable with it, would I not make her do it. I agreed. She was in for 30 minutes with her ipod on and me in the room with her. SHe didn't sweat. I hope I can get her there again tomorrow.
I called Mayo Clinic today. We already faxed all the paperwork of tests and a medical summary of Steff. I called to make sure they received it. They did and it's already in their computer. They said they would call us with an appt. once they figure out which Dr. will be assigned to her case. I also called Blue Cross/Blue Shield, Mayo is in our network and they cover it. I'm glad. Dave wants to drive instead of flying. Road trips is something we do as a family. Steff will get the front seat so she'll be comfortable, we'll make as many stops as necessary.We drove around yesterday when she got out of the hospital, jamming on music. That's something we all enjoy doing. So, all we need to do is get the appointment, a room and get there. I hope they are open to this gardasil thing. My amazing niece found a girl that is going through a very similar thing as STeffanee. I plan to contact the mom tonight. Her daughter still is not in school. Her symptoms started on March of 08. I only hope and pray the Mayo can get this figured out and get her back on track. My goal is to have her ready for Prom, which is less than a month away. We have everything ready for prom, but the girl. We'll get her there! Keep us in your prayers. Tomorrow is a new day.

Saturday, April 4, 2009

A Long One....

Hey! Its late Sat evening. Steff is still in the hospital, Dave is there with her. We thought we were bringing her home this afternoon, but didn't. She wanted to stay there, she feels safe there. I stayed all day, but decided to come home for the night. That's my plan anyway. I will be there by 7 in the morning to wake her up by 9. Anyone that knows our kid ~ knows that she would easily sleep until noon> no problem! : ) Seriously though, she slept all day yesterday/evening and all day today. They have her on a lot of meds. Muscle relaxers seem to kick her little bottom. They knock her out. Today they discussed putting her on YET another pill. I had to bring it to their attention that prior to this, the girl only took a multi vitamin. How about we figure out what is wrong and fix it, instead of giving her all these meds to make her sleep. Yep> you know me, ready on the spot. Dave thinks they are doing this to keep her from having the episodes until the extra Keppra takes effect.(Yep! there's 2 more pills!) Either way, I really don't think more drugs is the answer. I think I made my point. She slept all day yesterday, but when she woke later in the evening, she had an episode that lasted almost an hour. A bad one, problems breathing and all. Today, again, she slept, then in the middle of a movie, Marley and Me(or whatever) she had one. One hour, and new positions. We tried to put a pill for seizures under her tongue. She kept it for a minute or 2, then spit it out. I'm assuming it tasted bad. LOL They then gave her one to chew as things mellowed out. She did. It seemed to relax her muscles. This Dr. is trying to find a way to make Steff feel safe again. If the pill will shorten or lighten the spell, it might help her feel safe. This Dr. also took more blood (her favorite!) to check for heavy toxic metals, and has scheduled a MRI for her lower back and neck. I'm glad she is there. It's just the Resident for the weekend, but she is getting very involved. I like her!
I was feeling like we were in a deeper and darker hole than we had been. Today, with help from a friend that does art, I realized I need to pull out of that hole and put positive energy back into this situation. Thank you lady. Sometimes it's difficult, esp when nothing is helping her. That said, I videotaped Steff having a couple of episodes. This will make it easier to explain to the new Doctors we plan to see. It's a difficult thing to explain and visualize. SO, that should help. She has an appt with the movement disorder specialist on the 17th. Dr. P is hoping the video makes him realize he needs to see her sooner, like today. Also, if we have to wait, we are going to jump into making an appointment with the Mayo Clinic in Minnesota. If we can see the MDS this week, we will do that first. So, we really hope to get things moving this week to get her better. Dr. P said Mayo does not take insurance, you have to pay then file it yourself. But, my sister says that's not true. We'll find out on Monday AM when we find out how long it takes to get in. Either way, we are going.
The Dr in KS that has stated it's the Gardasil doing damage to girls, should receive a phone call from Dr. P on Monday. I gave him his number, he said he would call and get all the information he could. He also stated that he has been researching and can't find any cases similar to Steff's. Most girls get sick and keep getting sicker. Steff has shown inprovement, then got sick again. Whatever.
This is a long one. I'm not finished yet. The hair analysis. I'll hit it lightly tonight. Her hair was sent to Analytical Research Labs. Here's the results I understand. ha They deal in ratios. Ideal ratio with Calcium & Potassium is 4.00, Steff's is 16.33. Ideal ratio with Sodium/Potassium is 2.5, hers is 23.33. You can see her numbers are way off. Her ratios in a nutshell: she has 2 in the high range, 2 in the ideal range, 1 in low and 1 in more than low. Those are called Significant mineral ratios. She is in Sympathetic Dominance, her potas is less than 4. The sympathetic system (SS) is catabolic, which means it tears down the body. Energy is used to prepare for defense, rather than for nourishment or for elimination of wastes. Makes sense to me, but there are about 15 pages to read to figure out how it all works together. Interesting to me. Most information was printed from Dr. Wilson's web site. if you want to read more> I know a few of you are into this kind of medicine and would def enjoy reading about it. So, there it is. If you aren't interested, you prob haven't read this far. : )
I'm off to pick up and prepare for our little girl to come back home tomorrow. Seriously doubt I can sleep. 1. I'm here alone AGH!!!! 2. I can't get her off my mind 3. I'm not used to sleeping by myself. 4. I'm still working out a plan for next week 5. It's windy and noisy outside. It might be a long night.
Just spoke with Dave, she's still sleeping soundly. This is good, rest is good.

Friday, April 3, 2009

Where Do I Start???

Wow. Not sure even where to start. I could start by cussing, what where would that get me? I am SO frustrated, the tears are coming very easy. I feel we are back to square 1, but this time it's worse and seems like a deeper hole. Frustration is not a big enough word to cover all my feelings. Instead of Steff folding backward like when this all started with these episodes, she now twists into horrible contorted positions. The bending backward was odd to some, but I felt that with her doing gymnastics, backbends, and the scorpion in the builds, at least her body was used to that position. Her muscles certainly had 'been there'. This morning she woke up crying b/c her entire body hurt all over. The episode last night was killing me. I swear her left hip was touching her right shoulder. She was so twisted up that it was hard to tell where anything was. It also would NOT let up. The old ones would spasm for a while, release, then spasm again, many times. The new ones will not release at all. She is really screaming in pain now. The 'release' was giving her time to breathe before it started up again. The new ones also involve her neck, shoulders and head. I know her neck HAS to be killing her. All that information and I didn't even go "there" with her not being able to breathe. I'm not either. So..I'm not sure why it all changed, or why it hasn't stopped. I know we are all sick of it. She has an appointment with an adult neur on the 17th. He specializes in movement disorders. Two weeks is a long time to keep this up. Her heart is breaking and so is mine.
I did get the hair results. Interesting to say the least. I have been reading it, believe it and would like to get it started, yesterday. BUT I have to get Dave and Steff on board to make it work. He seems like he will jump on, but she has her doubts and refuses to keep taking more meds. She has had quite the personality change through this second round. The papers from the hair explain the process that she is going through and it fits. She is in sympathetic something> I'm not all informed yet. LOL but those of you that are familiar will get it. I will buy the minerals and vitamins, what can it hurt? I understood she will urinate out or pass through her blood what she doesn't need. I'll put them in her fruit smoothie I make each morning if that's what it takes. I just want her better. I know you all get it. Whatever it takes.
On yet another note. My amazing niece in KY is a computer rat. She has located a ped neu in KS that is working with girls that are having adverse effects from the Gardasil. She called him, spoke with his nurse. He doesn't want us to drag Steff there, he wants to review her info then work through her Dr. here. This is encouragaing to me. It seems like he has her best interest in mind. I would drag her there> if I knew it would work! Anyway, she's working on that for me. I have to send her some more info. Dr. P's nurse seems to think he will jump on board. Doesn't matter, if he chooses not to, someone else will. I went head to head with his other nurse this AM. She STILL thinks she is suppressing something. UGH!!!! I asked her HOW many pschys is it going to take for you to believe one?? She said if Dr. Hussien says she's fine, she'll let it go. Okay, stay with me. On that same note, in the paperwork from the hair ~ it states if the person is in the sympathetic state, they won't process "hurt" or "disappointment" fully. They hold onto some of it, b/c their imbalance won't let them process it properly. So, maybe there is a connection. I know I am rambling and mixing this all together. Sorry. I am FULL. I am trying hard to understand it and praying that I'm taking her in the right direction. It makes sense. I cannot say that enough. That Dr. works on the neotransmitters and that stuff. Sound smart....don't I?? HA> I know, I know, I still have a lot to learn on that front, but I'm certainly willing to do that.
I'm heading to shower, hoping for that peaceful feeling I experienced in the beginning, then back to my job. Seems like a long time since Cancun. It hasn't even been a week. Thanks so much for all the prayers and words of encouragement. Although I don't answer each email or phone call. I get them, they make me smile and sometimes cry. I appreciate all the love and concern coming our way. God bless each of you. Keep us in your prayers, we aren't there yet.
oh yeah, I watched The Today Show today. They had a lady with Dystonia on there. Made Dave cry. I, on the other hand, refuse to believe it's dystonia. I failed to mention. That's the new name they are putting on it, this time. Go figure. Dr. P already said it's not dystonia, it's too severe and she wouldn't have them in her sleep. I'm trying like h.... to roll with it. Just figure it out and get her back to 'my girl' that's what I have to say about it. I'm outa here.

Thursday, April 2, 2009

Not a good day~

Hey all> not much time to type, need to get back to the hospital with Steffanee. She was taken by ambulance again yesterday to the University. Seems her episodes are moving into her neck, shoulder and throat area, making it difficult to breathe. She had another last night after she fell asleep, observed by many that had never seen anything like it. (familiar?)
Today I went to get her information from her hair analysis. Interesting information to say the least. When I get time, I will TRY to break it down. It's called Nutritional Information~ my new folder that is. : )
My girl is having a very hard time is breaking my heart. I had to have a good cry yesterday and was very angry. Not with anyone, just the entire situation. I am sick to death of dealing with this and watching her struggle.
Another Psych came to chat with her today. I try to keep rolling with it. She did clear her today. Said she was a bright articulate young lady. Well, yeah....and???? She decided that she isn't suppressing anything. DUH. So, maybe now Dr. P will move past that. Doesn't matter, when we get out of the hospital, we are getting yet another opinion with another Dr. Hopefully, he will start from his own opinions, instead of following up on Dr. P's like Dr. C did. Okay, I need a shower and to get back to my new job. Keep us in your prayers, please.