Happy Halloween

Bumble Bee, the cheerleader, the urban diva, and The Thing ( Fantastic Four)Oh.... and Jake, too!


Pictures with Katie

Thanks for playing with us, Katie!


To the reader who left this comment:

"I have a child that has gone through a Chiari Decompression, fuse of c1 & c2, scoliosis correction and still has a remaining syrinx in the spinal cord. In reading what I could on the swine flu vaccine & GBS (, I don't know that his body could recover from more slowing of the cerebral fluid - which is what I read was a reallity with GBS(Guillain-Barre Syndrome). His syrinx is still there today (10/09)according to the presurgery MRI's before his scolliosis surgery in March 2008, and the original chiari correction was done in spring 2006. The chiari has significantly gone down but some sections on the spinal chord are still the same size. Anyway, my question / thought is that I shouldn't get the vaccine for him. I just don't know if his funky cfs flow due to the syrinx could handle any more sluggishness from a flu vaccine. Opinions would be appreciated. I am a new widow and trying to do this on my own. Thank you in advance".

Would you email me at ladybug_wi@yahoo.com and we can chat!



A day with a friend..

...the sun


Since Keegan was "down for the count" with the flu last week, we had to cancel his LP and EMG in Madison.
We heard yesterday that they have both been rescheduled. His LP will be on November 18th (Riley and Carson's MRI is on the 19th) and his EMG is scheduled for Dec. 3rd.

Praying for answers.......

Also, you may have noticed my new ticker to the left. Our friend, Katie, will be having her chiari decompression surgery on November 17th with our same team. Please keep her, and the surgeon, in your prayers.


H1N1 vaccine

H1N1 Swine Flu Vaccine Insert Admits It Causes Guillain-Barre Syndrome, Vasculitis, Paralysis, Anaphylactic Shock And Death

The package insert for the Influenza A (H1N1) 2009 Monovalent Vaccine manufactured by Novartis has been leaked on the Internet. According to that package insert, the vaccine (based on an earlier vaccine product known as Fluvirin) is known to cause a whole host of very nasty side effects such as guillain-barre syndrome, vasculitis, anaphylactic shock and even death.
Of course anyone who has been studying vaccine side effects already knows that it causes all of these things, but the story here is that the insert for the swine flu vaccine itself is admitting all of these things. The insert says that it was updated during September 2009, so it reflects the very latest information.

You can read the package insert for this vaccine for yourself right here.....


Recent life

Do not take this path.....
....or you will find this
Got H1N1?
(Unofficially Dx by the nurse on the phone)

But not these 2!

Love Fall? You have got to go check out my girlfriend Molly's Blog
Pictures to DIE for!


Help spread awareness

Here is an obit of a woman who just died of chiari malformation and other conditions that go hand in hand with it. We need to find a CURE for this condition, and spread awareness!



Meet Mackenzie Rayne Zepka


Surgery NOT on her agenda!

Last week ended on a sour note in our house. My sweet little girl, Riley, has been fighting with medical issues ever since she was dx with chiari malformation in 2003. Well, I think last Thursday took the cake for her. Not only physically, but mentally and emotionally as well.

Last Thursday, Riley, had an accident at school at the lunch hour recess, but she was so embarrassed that she didn't really tell anyone how serious it was. She was playing on the monkey bars, and when she got across, she placed both feet on the metal bar step and tried to turn around. As she tried to turn, both feet slipped off the step and her crotch took a direct hit (Wave your hands if you have done something like this in your life?!?!?). She said she cried, got off the steps, and walked over to a corner for the rest of the time. She didn't tell any of her friends, and she didn't any of the adult safety patrols either. As she waddled back into school, she did mention it to her teacher. Her teacher told her, "You need to be careful because that area is very sensitive" and that was the end of the conversation. She continued through the day without mentioning it to another soul.

At 3:16, I went to school to pick Riley up (Keegan was not in school that day because he was up vomiting the night before). As she came out the doors, I could see that she was not walking well at all. I asked what was wrong and she told me that she fell off of the monkey bars and hit her crotch on the metal bar step. A shiver went up my spine because I KNOW how badly that hurts.
I asked her if she was OK and she told me, "It hurts a lot". I had one errand to run and thought she might be OK to run it with us. We got to the store and looked around a bit before the the gruesome foursome all blurted out that they had to go potty. I sent the boys into the boys room, and the girls into the girls room and I waited right outside both bathrooms. The girls were in no longer than 30 seconds when Carson came out and said, "Mom, Riley has blood in her undies!!" I called the boys out to come into the girls room with me, and noticed that Riley did indeed have blood. I knew her monkey bar accident was much worse than she lead onto be. I grabbed all four kids, put the items I had back, and we headed back to the car, but not before putting a call into the peds office. After a bit, I finally got a hold of our nurse and she told me to take Riley home, examine the area if possible, and if anything got worse in the mean time to take her right to the Emergency Room.

On our way home, I called Matt and my mom to see who could come cover the 3 amigos while I worked with Riley. She was in so much pain that I just took her right to the ER. She was SO scared that they were going to have to do surgery. She made it very clear that surgery was not on her agenda!! Luckily, it was a slow afternoon in the ER, we were able to get in right away. As they took us into triage, the nurse asked if this could be anything other than an accident. It took a second for it to register what she was talking about, then I said, "NO, this girl LOVES the monkey bars and she had the callouses on her hands to prove it". At that point, I got scared!

The staff was great. They had a female NP on and she took the lead. She was able to take a small peek at Riley and the damage that was caused, and between the both of us we decided it was best to call in a OB/GYN to make sure she wasn't hurt worse that what we saw. For that to happen, they needed to sedate Riley so she wouldn't fight us. The sedative they used was Ketamine. We had never used that one before and was a bit nervous of the side effects. The ER doc assured me that if monitored closely she would be alright, which she was. Once the drug took affect, the poor girl was chasing bugs on the ceiling, but never notice the OB/GYN examining her. After a good peek, the doc noticed that she had a good 1 inch cut, but because of the location he was not able to place any stitches. After he finished, we waited for the sedative to wear off, which caused her to be severely dizzy, which then caused her to puke. 2 doses of Zofran were given to help with the vomiting. After about 1 1/2 hours of recovery, she finally came through all the meds and we were able to go home.

Riley stayed home Friday with a doctors note, but it was hard on her. She didn't leave my side, she cried all weekend, when my parents came over she hid from them, not talking to them while they were here - which is VERY odd for her. I am not sure how much more trauma this little girl can take. She is not playing with any of her friends at school and she is barely participating. I've talked to her teachers and they are on board with getting the school counselor on board and maybe even some outside help. I am afraid Riley is slipping back into her egg. If anyone has any suggestions for me, please leave a comment.


Damn Chiari, Damn metabolic myopathy....

Just talked to the neurology nurse and Keegan is being scheduled for an EMG, spinal tap, and a possible muscle biopsy. Got to just freakin' love it!



Keegan had his appointment with Dr. I yesterday to discus his chiari treatment plan. Let's just say I was frustrated beyond belief. Trying to feel more at ease today. I am not very excited about Keegan's chiari treatment plan to say the least. Neurology ordered the MRI that they wanted, not the one that NSG needed, now we have to go back for another MRI - yeah at $13,000 a pop. We did testing with neurology for metobolic myopathy, and it all came back negative. After weeks, now they want to do more testing - for what NSG couldn't tell me. Plus they want to see how Carson does in a few months before they bring surgery back to the table for Keegan. What does Carson have to do with Keegan's treatment plan?

On the way home yesterday, Keegan asked," Why don't they help me like they helped Carson?"