Sunday, May 31, 2009
She has put herself back into the knee brace. She pops and locks her knees when she walks. Not sure if she has always done this, but we noticed it at the hospital in Feb. The knee giving her trouble is the one she had surgery on, they removed the plica. Her PT seemed to think that there is a piece left in her knee, it catches on her knee cap when she walks. I'll call and get an appointment tomorrow. She missed that follow up appointment, b/c she was in the hospital.
When she went in for acupuncture on Friday, I mentioned her hips still hurting. He put pins in each hip, along with the same ones in her back. He asked her if her back was still hurting ~ she had to think about it, then said no. This is good. The fact that she had to think about it alone, was good. Hips and knee and perhaps we are there! She has a dentist appointment on Tuesday about her wisdom teeth, then Wed she sees Dr. F, the rheumotologist (sp) and has acupuncture on Friday.
Busy week. Sometimes I wonder if she has been uncomfortable with pain for so long, that she can't let it go. I don't think she is faking anything, but she has had joint and muscle pain for almost a year now. Of course, my goal is to have it all fixed and be done with it. I HATED seeing her put that knee brace back on. But if it helps and she needs it...... but I wish she didn't. I am SO over dealing with all these DRs and appointments. Yeah, I know, I'm a roller coaster rider. I really thought we were so close to being done. Bottom line ~ I just want her to enjoy her life, w/o worrying about her knees, hips or back. The teeth thing can be resolved easily. Well, compared to everything else. LOL I'm off to bed, time has gotten away from me, and I can't sleep in tomorrow!! : ( Have a good week!
Friday, May 29, 2009
Steff is still sleeping, shocker I know. She has come a long way from Feb 2, to a twitch in her neck and back. AND it must not be too bad, b/c I haven't noticed. But then again, I have stopped examining her every move like I was. She's going to be okay. She even did 2 loads of her wash yesterday! AND all the way through, out of the dryer and all! LOL She hasn't done her wash since Jan. We all know she has a ton of clothes, but yes, I have done it for her while she was sick. I was waiting .... and it worked. I'm glad to see her doing things w/o me hounding her. She has acupuncture today. We took another walk last night, she complains that her knees, back and hips hurt quite a bit. She comes home while I keep walking. I know you prob are surprised I don't quit as well! LOL We'll mention this to her Dr. next week when she goes in. I'm curious to see what they will do about her tossing and turning all night. The nurse said she tore that bed up the night of the study. SO, what will they do? Tie her down so she will lay in one spot?? ha Other than drugs, I'm not sure what the answer will be. Joking aside, I'm serious. I am curious as to what the answer will be. OH! and speaking of drugs, she is off all of them now. She is only taking Aleve 2X a day for inflammation. This is good.
She stopped by her job one day this week and she starts back on June 7, with quite a few hours. She's happy. I'm glad too, it keeps her busy. I believe that's about all I know. : ) Enjoy the nice day!!
Thursday, May 28, 2009
On a little lighter note. Steff finished her Stats final yesterday. Last day of home studying! She was very glad to be done. I'll check on her final grades this weekend. I don't think they will be on the parent site until after Friday. THEY were busy busy busy finishing up! Mission accomplished! I am SO glad they suggested the home bound studying! : ) Besides not having to try to sit all day, it kept her from being thrown into the classroom while she was so far behind. ~ Def a fantastic program. Not to mention that she was blessed with one of her favorite teachers to work with her. AND that we got to enjoy Megan and Morgan during this time! CUTE ~ CUTE girls!
Steff got in the pool yesterday with the girls! They were giggling and laughing hard. I love to hear kids having fun like that, it makes me smile. I know the water was cold. They built a raft and were floating around without getting wet ~ UNTIL they bounced each other into the water!
Then we all took a walk before Steff had to be at the hospital. Life is Good.
They woke her up this morning at 5:30!! She already showered to get that glue smell out of hair and face and is now relaxing on the couch. Wonder how long it will be before she falls to sleep! I think I might go in and join her! Have a good day!!!
Tuesday, May 26, 2009
I think we are there. I just read a paper she had to write for school. It states that "the walls are no longer closing in on me" ~ It's about her last 5 months. It brought tears to my eyes, but was well written. She is a very smart girl, with a good attitude about life. Here's to one day at a time.
I'll touch base with the finishing of school. : ) All she has left is Stats, I think. Finals.
Friday, May 22, 2009
Steffanee Kaitlin is a Senior. She kept telling me that today. And kept asking what kind of a life will I have when she leaves for college? She honestly thinks I will be lost w/o her. At first I probably will, but I'm not going to shut down and die. I told her that Dave & I will prob go to Hawaii, Cancun, and travel quite a bit. HA. She didn't think that was funny. I told her we would have a no clothing house when she leaves. She grossed out. I'm sure we will miss her and have that empty nest sadness for a while. But we will think of something to do while she's gone, I"M SURE!! Besides, do they ever REALLY leave? Seems to me that they keep coming back for a while! LOL For food, to wash clothes or ask you to do it, $$, I could go on. : ) A Spoiled child to say the least!! ~ Life is Good.
We obviously opened the pool last night. UGH! The water is clean, but the bottom of the pool is pretty nasty. That's high on my list tomorrow. Summer is here. Enjoy your holiday!! RWB!!
Thursday, May 21, 2009
Yep, she just walked in the door, complaining about how tired and hungry she is, should be a fun evening! ha.
Wednesday, May 20, 2009
Me, I'll be heading back to work soon. That's a good thing. I think we have her in a place that I feel okay leaving her. When I went back to work in April, I was a nervous wreck every day, just waiting for my phone to ring. AND it did, several times. I didn't want to do that again. But it's a bummer that I will be going back to work when we open the pool and the sun starts shining! But... life goes on. Sun damage or a pay check? I believe the $$ wins. LOL
Hope everyone enjoys the day, looks like a nice one!
Tuesday, May 19, 2009
Nothing much new to report. She goes back for Acup on Friday. I get my long over due hair cut on Thursday. : ) Last h/c I had was with Steff having those eyeballs rolling into the back of her head and quivering all over her eyes. Bad memory! Yep, it's been quite the experience.
Hard to believe that school is out this week. Time flies. Going to be time to open the pool! THAT's good relaxing news. : ) I love the sun & water. : )
Sunday, May 17, 2009
I didn't post b/c I didn't want to set myself up to have to take words back. : ) We touched base with her more than usual. We both missed her, since we have all been together so much. Dave & I went to Erika's (niece) dance recital, which was good, then out to eat with the family. We both enjoyed it, then came home and chilled out! I watched my favorite show... Medical Mystery! It has been a fav of mine for several years, it isn't anything new! I also like Untold Stories of the ER. Strange, I know. Dave caught up on Survivor so we can watch the final show tonight.
That's about it. Boring, I know. But, boring is good.
Steff did get her Senior Pix and they are good. Going to be hard to make choices.
OH! And Dr. Fosenlogan (sp) called. I know you know I'm going to say... the tests were normal. Surprise surprise!! X-ray & blood were the only results she had. Since things are better, I'm okay with normal. I asked to get her sleep study moved up, couldn't, so we are on call. If they get a cancellation, we're in. If not, we will wait.
I go back to work on May 29. Hoping to finish up some of the Dr visits by then. She will continue acupuncture at least 2 more weeks. June 2, she gets her wisdom teeth looked at, they keep coming up & going down. June 3 is her follow up with Dr. F. Hoping things just keep getting better! Prayers are still good!! : ) Life is good!
Friday, May 15, 2009
Today I was thinking...scary! Steff is getting better, seems that even her pain in her back has lightened up. I was wondering if it was the acupuncture. When I asked her, she reminded me that we did several things all together. She's right.
- Aleve 2X day
- Taking her off the brain meds
- She is now going to school for 3 hours, daily
So, not sure which one to give the credit to, but will take it! And will continue the acupuncture. We just returned from another visit. He said her "knots" in her back were not as prominent, and feels they are making progress. Another good thing! The sauna, water, rest has been an ongoing thing and will continue. But these things have made a difference in the last two weeks. Perhaps it's the motivation to get to school and the interaction with the students. Perhaps this "thing" has finally taken it's toll and is out of her system. The acupuncture might be helping her back/hips, along with the aleve for the inflammation. AND you know coming off all those meds HAS to make a difference. I felt bad just laying all of them out for her twice a day. Tonight she will drop to 1/2 & 1/2 Keppra. This is good, very good.
Still haven't heard from the Xrays, blood, or echo. I am assuming no news is good news. I am going to call her today for the results and to see if she can move the sleep test up. I really hate to start the new school year doing medical tests! I would really like to wrap this up and put it to bed FOREVER! This journey we have been on since Feb 2nd has def been a challenge and won't hurt my feelings at all when it ends ~ trust me! What started out as emails, moved to a blog and WHO ever thought I would still need to get my therapy through this STILL on May 15??? I do have to admit, I have learned a lot though. Not only do we have GREAT friends, but live in a GREAT community with a LOT of support for our family. It warmed my heart at prom, all the moms and families that grabbed Steff and were glad to see her!! She was touched by it as well. I didn't mean to get all mushy, but I cannot say enough about the people in our lives ~ how the prayers, support, hugs, looks of understanding, encouragement, the fundraiser, cards, flowers, everything ~ has helped us through this tough time. Hopefully we are on the tail end of it and almost finished! THANKS TO ALL!!
Thursday, May 14, 2009
Acupuncture on Friday, that's it. LIFE IS GOOD.........
Wednesday, May 13, 2009
Me. I FINALLY went into town and made prints from Spring Break, Easter, Prom ~ I had a LOT. I pick those up today. I also remembered to pick up frontline for the cats! Maybe my memory is coming back, or the notepads are doing their job! lol Either way, I got stuff done and that is what matters.
I love these short posts ~ live is good! : ) BTW, she is still asleep.
Tuesday, May 12, 2009
Crystal, please contact me through email at R0br1ch24@aol.com even if you just send me your email address. You are the only story I have read where symptoms lighten up. Thanks SO much for commenting and sharing your information! I would like to ask a few questions, if you don't mind. I will keep your daughter in my prayers.
Here is a video I received today in my email. It is from Health Science Institute and is worth taking a few minutes to watch.
Monday, May 11, 2009
Her home bound teacher came over, Steff took her biology test and studied with her for a while. She is working on homework now. That's our day! Somewhere in there, I did take a walk! Not much going on here.
I did find out that her sleep study will be in the summer> seems that is the soonest they could work her in ~ guess that's fine, she won't have to miss her cadet teaching.
Another reason I KNOW that girl is feeling better> she was on top of her game with the boys yesterday. They didn't get anything over on her!
Sunday, May 10, 2009
She's kicking it on the couch now, resting.
Tomorrow we have a full day. She has acupuncture at 10, that echo thing for her heart at 1:30, home bound study at 4 ~ most of the day won't require much physical activity for her, but will for me, running her here and there. I won't know what to do when all these DR visits are over. Oh yeah, it's called work. ha. Baby steps, but things seem to be getting much better. 15 minute episodes are much better than those that lasted more than an hour! I KNOW she's getting better, because she is taking the time to fix her hair again, and taking 4-ever to put her makeup on. She had been just throwing her hair up and skipping the make up, unless she put it on in the car. There's my Mother's Day Present! A healthy girl would be good! Actually they got me an Ipod, and Josh is putting music on it for me! : ) Yep, life is good. Have a GREAT day ~ each and every one of you!!!
Saturday, May 9, 2009
Friday, May 8, 2009
I let her drive to school yesterday to talk to the counselor. She was excited and happy. Seems that someone realized she HAS to finish up her cadet teaching hours or she will lose her credit. I am so glad they caught this. I think this will motivate her to get there! On Monday or Tuesday, as I was trying to get her to go, she stated, "What's the point?" But now, there is a point. I know she gets frustrated, believe me! But doing things she used to do would help her feel normal again. Besides, she doesn't have to sit during those 3 hours of cadet teaching. She can move around and keep that back loose. Let's all hope she can do it without any set backs and that it raises her morale. She seemed excited about it yesterday. Getting out of bed to do it, though is another thing. Lucky for her, it can be the last 3 hours of the day! I'm glad.
We went yesterday to view her proofs from Lucas Photography. They were REALLY good! It will be hard to choose when we go order. Senior Pictures.... ... .. doesn't seem like we should be there yet!!
I had to reschedule her acupuncture appointment from today to Monday AM. She also has that Echo (sp) on her heart on Monday at 1:30. I can't reschedule that ~ so she will have to miss school on Monday. They still need to call and set up the appointment for the sleep study. Hoping that one is overnight and she can still do her 3 hours.
Okay. I have gotten several questions on email about Steff. I'll try to answer a few. Is she better? Yes. Is she back to normal? No. Do I still think it is the Gardasil? Yes I do. I don't think the Gardasil was the only thing going on here, but I do think it made things worse and complicated everything.
If you read the adverse effects on the Mayo Link, she has SEVERAL of those listed. IF you continue to read on that link, it also states that: These side effects may go away during treatment as your body adjusts to the medicine. I am holding onto that. Perhaps her body has quit fighting and is adjusting to the medicine. Who knows? All the detoxing she has done could have helped, or maybe not. All the distilled water she drinks could help or maybe not. All the vitamins and minerals she takes could be helping or maybe not. It could be all the prayers. I really don't know why she is getting better, really don't care WHY. I'm just glad to see it happening. I would like to put this DUCK to sleep and never have it visit again. It has been a very LONG four months for me. I am sure it has been even LONGER for her. Okay. Sounds like I need to get off that darn roller coaster before it drops down. I really hope we are making progress as it appears. We will continue all the things we are currently doing with her. We will still keep our thumbs on her head ~ making sure she gets plenty of rest, water, vitamins, etc. We are NOT there yet, but it looks to me like we are going in the right direction. Don't put her out of your prayers just yet. : )
One more thing about the Gardasil adverse effects (don't roll your eyes!) If I had this list from Mayo when we went for the shots, I would not have gotten her shot # 2 & 3. So, please share this information. I just would like other moms to be more educated than I was. Muscle and Joint pain was a BIG complaint of Steffanees from the very first shot! I didn't know to watch for it.
Okay, I completely got off track on the questions. LOL I'll try to answer a few more tomorrow. Probably need to start trying to get her up ~ it's a job!
Wednesday, May 6, 2009
OH! and the receptionist at the Dr office ran us coupons for KFC grilled chicken dinner, FREE.
So, we had free lunches. How often does that happen? : ) It was good.
She plans on staying home tonight to get her homework done and work on her dad so she can start driving again. AGH!! Yep, I told her to talk to him. I get tired of being the bad news bear.
Here's to hoping my prayers were answered today. I really hope it is that simple! I mean that they can fix these things. Dr also said this is typical of someone that is extremely flexible. Yep, that would be our girl. SO> let's hope this will bring some comfort to this child in her back, hips and knees, then the rest will follow. You know, like sitting for school. : )
Tuesday, May 5, 2009
I have prayed very hard that this Dr tomorrow can open a door to figure this out and help her to feel better. She did tell me today that she just puts a smile on her face and acts happy so that everyone will think she's getting better. I really hope we can get her feeling better. She thinks I don't understand. When she's a mom, much later in life, she will know that not only do I understand, but I hurt with her every minute of the day. Here's to a great tomorrow and a door opening with the new DR. ~ please!!!
She had a restless night last night. Mild compared to where we started. Sometimes I feel we are really making progress, other times, I'm not sure. We talked about getting her back on a schedule last night. Up by 8, down by 10. She could work on her homework and see how her body tolerates less rest. Attend school for a couple of afternoon hours, then study with Ms. Turner. It sounded like a plan. She is still sound asleep. I have tried several times to get her up. I guess she thought tomorrow! LOL
Hope today is a good day and she gets to bed early tonight. It seems to me that 12 hours of sleep is excessive. BUT she has always been a sleeper. Rest is good, but DANG!! So is life. : )
Monday, May 4, 2009
I sent out an email THANK YOU for the fundraiser. I cannot say it enough. We appreciate all the time & energy put into it, along with all the support and prayers coming our way. I do believe this is helping her get better. I know it helps to keep me in better spirits~ it helps me to stay positive. Words of encouragement and hugs have helped us through this.
I need to get a few things done and tackle this upstairs ~ ugh!! I'm here and it needs to be done.
A good night of sleep certainly helps!! : )
Sunday, May 3, 2009
She actually thought we could make the recital today. I really would have enjoyed it, BUT a. she didn't get enough rest b. I KNOW she could not have sat that long. c. I'm really tired d. the house is a total wreck ~ and she's down for the count right now.
She plans to go to school tomorrow for a while. Not sure of the details yet, but she still hasn't made it in to talk to the counselor yet. Monday she said. : )
She had fun last night, no episodes and laughed a lot. I would call that a good night for her. I hope tonight is just as good. Sleep is good, for all of us.
I'm off to get at least the kitchen cleaned up. I fixed breakfast!!
Saturday, May 2, 2009
We have decided to let her go to the party, but not sure just how long she will get to stay. We will be touching base every hour. I'm just scared for her and for everyone else. Quite frankly, it is kind of scary to watch. One hour at a time. That's the best I can do.
SO, I will post tomorrow about how much fun she had and what a GOOD evening she had!! Here's to positive thoughts!!! : ) I'm going in to rest, b/c either way, it's going to be a long night for me ~ I'm the mom!!! : )
Friday, May 1, 2009
I'll try to post a couple of prom pix, if I can figure it out! LOL