New Pages

I have a new page and an edited page, if y'all would like to check them out.

1. The Q&A is different now. I got annoyed with formspring, so I set up a new e-mail account instead. This account will be used for blog stuff, so if you have a question or something you'd like me to write about such as how to set up a newt habitat, go on over to the Q&A tab and shoot me an e-mail. :) 
2. I've added a page about my pets since I imagine I will be writing about them a lot. It's just a page with pictures and information on who's who and a bit about what they're like.

That's it, not much excitement I know, but that's just the way I'm rolling today.  (haha, wheelchair joke)

Excitement! Try Not to Explode

Hello blog reading people!

You all probably knew this already, but it's been awhile since I've done any bloggy stuff. I have decided to chance this by blogging right now. Aren't you excited? I knew you would be. Try to contain yourself, though, too much excitement might make you explode. It probably wont actually, but I think when it comes to randomly exploding one should always err on the side of caution.
Since we've gotten that taken care of, let us move on to other things.

1. I have high speed internet and wi-fi!
   This is a big deal for me, we've had dial-up for as long as we have had any sort of internet connection and now we are finally free of it! This means I don't have to sit at the main computer and battle the desk chairs that are so thirsty for my blood in order to blog or do other exciting online things. :)
   Right now I'm chilling on the futon. Take that, evil desk chair!
   
2. My inner ear has finally sorted itself out. I don't remember how much was written about my inner ear getting all screwy, but it was an ordeal. I was really dizzy all the time and had a hard time walking or even staying on my feet, I would seriously randomly fall over because my inner ear refused to sort itself.
   The worst though, was probably at night. I am a very active sleeper, I roll and spin when I'm having normal dreams and I thrash and kick and other violent actions when I have nightmares which make up 3/4 of my dreams. Moving around like that made my inner ear more confused and angry, so I'd wake up and feel very sick. I didn't sleep much and spent a lot of time in the bathroom hoping I didn't puke all my guts out. I was a dizzy and sleep deprived zombie, one of the main reasons I didn't blog any.
   But, now my inner ear has gotten over itself and I can stand and walk without falling over...most of the time. :)
   
3. I updated my wheelchair page since it was out of date. You should go check it out, there's a picture and everything.
    
4. Formspring is starting to enrage me by asking weird and random questions, so I'm probably just going to set up a different e-mail account or something for if people have questions. You may also send me pictures of Narwhals if you so desire,

I think that's most of the exciting stuff, so now it's onto the medical update stuff.

• As stated above, my inner ear has fixed itself and I am very excited.
• I have been completely taken off of my sleep-aid because I was having some pretty crazy hallucinations and almost set my bed on fire.
• I'm still seeing an acupuncturist and pain management therapist (I think that's her title, but I'm not positive) and they're helping somewhat.
• I am still being treated for chronic Lyme disease
• The chronic pain levels have gotten higher. Thanks to a misunderstanding and miscounting how many I had, I actually ran out of painkillers and lost control of the pain. The last time this happened I was in the hospital for a week, this time I just screamed all night, but after I have an uncontrollable spike like that, the pain is always higher and harder to manage. I am working on it, however.
• I have started a Smash Book for get well cards, well wishes, encouragement, etc. If you want to put something in there, mail it to me and I will glue it in there. :)
  For people who don't know my address....I will get back to you on how to get things to me. I may have a P.O. Box address to give to you later...

That's all I can think of for right now. If this post makes no sense, I'm sorry, I'm in a lot of pain right now and am using blogging as a distraction until I can take something. :)

As always, thank you for reading/praying and feel free to ask any questions you may have.

Three Steps Forward and Two Steps Back

 Well, Sara is making progress, but has also had several setbacks. April 1 she had a seizure and had to be taken by ambulance to the ER. Initially, Dr. Anderson thought it was due to electrolyte imbalance brought on by a nasty GI bug she'd had, but after having more seizures, he re-evaluated and decided it was one of the medications she was on the help with pain. We slowly weaned her off it and added Diazepam to avoid any additional seizures while we were adjusting medications. So, the extremely good news is that since stopping the Venlafaxine there have been no new seizures and the twitching she was experiencing when her pain got high has also disappeared! We weren't sure what was causing it, but it seems she was just super sensitive to this medication. Unfortunately, without the medication her pain is worse. The good news on that front is that last time we had to change medication, the pain sent her to the hospital for almost a week, so we're hopeful that the overall pain levels may be ever so slowly decreasing. Any positive in this storm...
  To manage pain, she has started acupuncture and is seeing Dr. Hunter with UCH's Integrated Medicine group. So far, it's too early to say if it's helping with the pain, but she has noticed the magnets placed on her ear really helps with sleeping which in turn helps manage the pain. Dr. Hunter will be working with her on additional breathing, imagery, and biofeedback techniques.
 Another setback has been several falls she's sustained during the seizures, through tripping or when her legs give out without warning. She had a CT April 2 because of these falls and thankfully it was clear. She is experiencing some dizziness, nausea and fuzzy headedness from the concussion(s), but Dr. Anderson thinks it is from the inner ear bones getting shaken up with the impacts, much like a snow globe. She just has to be extra careful until they settle down on their own. We have threatened to get her a motorcycle helmet if she keeps hitting her head...
 Otherwise, she is her usual cheerful self and looks forward to hearing from her friends. Your notes of encouragement and prayers are greatly appreciated and mean the world to her. So, from a grateful mom, thank you!

Mission Accomplished!

For the past month or two, a big hawk has been chilling in my backyard. I knew it was a hawk because my big brother Jayne (commonly mentioned in the Twinny Time Blog [I tried to make that a link, but my app is retarded so I'll fix it later]) has always been really interested in birds of prey and everyone around him just absorbed the information. To this day I am a boss at identifying peregrine falcons.
I also know that some hawks like to eat turtles by picking them up and dropping them on rocks. I have a pet turtle whom I love dearly, so this concerned me a great deal and I made it my mission to identify what type of hawk it was so I could see if it would try to eat Bach. If that were the case, I would have to get started on building an impenetrable fortress for my turtle to play in while he was outside.

Today, I completed my mission! With help from a bird book and Jayne, I have discovered that my new hawk friend is a Swainson's Hawk. They are big, beautiful, and most importantly don't eat turtles.
Thanks to his markings, I know that my friend is male so I have decided that my next mission will be giving him a name...

A quick and messy medical update

I've been having seizures. On April 1st, I had a grand mal and had to be taken from my house to the ER via ambulance. I had a petit mal on Thursday, but my parents were able to break it before 911 needed to be called. Yesterday my legs gave out without warning and I fell down the stairs and got really banged up. This morning I woke up to a seizure ending, realized that I needed help and grabbed my phone, but I started another one before I could call or txt. Fortunately I was convulsing so much that I sent my mom a txt full of gibberish, so she came and broke the seizure. While she was going to get me some medicine I had another one, so she had to break it again. Then, after convincing I wouldn't have another seizure because of the medicine, I went back to sleep. Today I've honestly just been miserable, my body is really beaten up and I keep trying to have seizures. Fortunately, someone has been with me all day, so the seizures were broken before they had a chance to fully start. I'll be seeing my doctor on Monday and probably start taking anti-seizure meds.
Thank you all so much for your prayers and encouragement, they mean the world to me. I know God is in control and while I don't understand why this is happening, I trust Him completely and know that He loves me and knows what He's doing.

On a random sidenote, my sister's suggested I start a caring bridge website so I can do more to keep people in the loop about what's going on. I'm still very much on the fence about it, so I would love some feedback. You can either comment here on the blog or on my Facebook account.
I feel like I've been hit by a train, so I'm going to stop here and get some rest.

Thank you all for reading, I hope y'all have a fantastic week.

God Bless,
Sara

I Don't Want to be a Retarded Bat

For some unknown reason, my body has decided that I am a bat. Not an awesome bat like the vampire bat, not a cute one like a fruit bat or those fuzzy little white ones that make leaf tents, no, that would be too cool and I am 95% sure that my body wants to kill me. My body has decided that I am a retarded bat that goes to sleep at 6am and wakes up at exactly 2:30pm. A bat that lived like this would be shunned by all the other bats and get eaten by something. Way to go body, once again you have come up with a flawless plan.
We've tried to just wake me up at a decent hour, but I am nearly impossible to wake up, so that didn't really work and it makes me question my fate if I needed to wake up to survive, like if my house is on fire.... I think I'll just cross that bridge when I come to it.

Anyways, back to me being a really stupid and doomed bat. We have decided that the only option for me to keep me human is to stay up all night and day and then try to go to sleep at a normal time.

So that's why I am writing this really weird and random post right now. So far it's gone well, mom passed out, but the older sister and I are watching tv and discussing what would happen during a zombie apocalypse during the breaks.

I may post other random posts, so consider yourselves warned.

Hallelujah!!!

First off, Sara really wanted to write this update herself and kept hoping each day she'd feel up to it. But, pain mixed with exhaustion has made that impossible and we hate to keep y'all waiting any longer.

First, She saw the integrated medicine group at University of Colorado Hospital on Feb. 27 about her pain. The PA we talked with was very nice and suggested a sleep study to find out if there is anything other than pain keeping her from getting a good night's sleep. She also suggested consulting the geneticist at Children's to see if the hyper-mobility in Sara's large joints is truly genetic so we know if there are other medical issues associates with it. For pain, she suggested acupuncture in addition to what she's been doing. Sara bravely faced the fear of needles she developed with Embrel and Humira. There was also someone there who could show her the needle and let her experience how it really feels and after that, she was fully on board with the plan.

Since Feb. 21, Sara has taken every opportunity to practice standing and has really pushed herself. She also practiced walking holding on to my or her dad's shoulder every time she moved from room to room. On Feb. 28, she walked to bed just holding her dad's hand and stood on one foot. Pretty exciting after all these months!



























Then, being Sara she had to go one farther... Feb. 29th '12, while we were helping watch a friend's kids, she was standing to help put the 4 year old in bed and Poppy was excited and jumping. While trying to keep Poppy under control, she came into the living room, walking on her own and didn't even realize what she'd done!! After we all freaked out, she had to experiment with this new found independence in a very Sara way.... Sara and Poppy! Every since, Sara's been practicing walking every chance she can. Sometimes she forgets it's been months since she's walked and over does it and has to pay for it later, but she's getting stronger every day!!

We are praising God for His healing and thankful to the Lord for leading us to a doctor familiar with Lyme Disease. We know that all this is in His hands and are trusting Him to continue this good work in Sara. She wants to thank all of you for your prayers and encouragement, they have meant more than you can imagine especially when the pain is high or it seemed she was only getting worse.