Wednesday, March 23, 2011

poked prodded and drained

Saw the new neuro doc today. WOW. I have found the older Asian version of House. Found out this is the number one person in the area for neuro disorders. He reviewed old records, found things we didn't think we significant. Ordered another MRI - this time of the spine. I had so much blood drawn to day that I am feeling a little pasty. Trying to get authorization for another test.

I feel like this doctor is listening and trying to figure this out. That is such good news after all the road blocks. I go see him again in 6 weeks and hopefully we will have some answers.

So now we wait.

Monday, March 21, 2011

I don't remember much

I know many of you have seen posts on FB as well as here that my dad was here for a week babysitting me. Here is what happened

I went in for my lumbar puncture as planned - however the aftermath was totally unplanned. The lumbar puncture went fine but when I was in observation afterwards is very fuzzy. I remember them telling Scott that I had to wait 2 hours in observation because of being prone to migraines. I remember telling Scott I was getting the worst migraine ever. I remember someone loading me in to the car and being rushed 2 blocks to the hospital. I remember a really nice security guard staying with me while Scott parked the car. I remember after sitting in a wheelchair for a while Scott grabbing a nurse and telling him that I had had a lumbar puncture and I had to be laying down. Then I was on a gurney in a hallway.

I was eventually put in a ER room. At some point some point I got an IV. No clue when. I got a CT scan to check for a stroke - no clue when. I lost the ability to swallow. Remember a nice nurse taking the water from me when I started choking. I was admitted to the hosptial. Scott knew I could not stay alone with Drew for a week - heck we didn't know when I was going to get out of the hosptial. SCott had to go to Dallas on business that could not be postponed in anyway. The government doesn't put off meetings.

He called his mom first but she couldn't get out here till Tuesday. So SCott called my dad. The next thing I remember being told that Dad was coming to stay and take care of me. Thanks to Andrea for arraging everything and sacrificing a week with out dad during the rainy season and the crack in the wall. Thanks to Mary Lou for not being able to come.

What I do remember is having the best week of my life with my dad. It was the most wonderful theraputic week. Lots of talking laughing crying loving healing. What we both needed.
Dad met my friends, went to Dr.appts, pack meeting, knitting group, DRew's OT and speech and so many other little things. IT meant the world to me.

We see a new neurologist on Wed. We now have more questions then answers. No one can explain what happened after my puncture. It was scary. I have so many holes in my memories but I think that is probably a good thing. But not as good as having my dad to myself for a week.

Friday, March 18, 2011

Raising a child with a disabilty

First let me say this week has been incredible. THe lumbar puncture not so much. I will explain what happened in the next few days. But until then let me say my dad saw Holland this week and has a new appreciation for it's wonders, beauties and difficulties. And I have a new appreciation of my dad as well


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thursday, March 10, 2011

today is the day

I have so much to blog about about. the kid who hit drew but didn't get suspended. I am still fighting that battle. Teaching others about Tourettes. Teaching Drew about Tourettes. Deciding to take my life from what ever this damn thing that is making my life a living hell. Getting ready for my hubby to leave for a week in Dallas. My upcoming trip back to Kansas.

But today is my lumbar puncture. I will be strong because I have God on my side as well as wearing my 2008 Jayhawk National Championship Tshirt.

Back soon.

Wednesday, March 09, 2011


My husband wrote a very profound blog on what it is like to live with Andrew. It gave a day in the life instance that we have to deal with regularly. It is hard for people not living with a child like Drew to understand the day to day struggles we have. I hope you take a minute and read Scott's blog post

I wouldn't change anything but there are days the struggle seem so overwhelming but Drew is such a wonderful fun loving little guy I couldn't imagine doing life with out him.

Sunday, March 06, 2011


You never tell a kid on the high autism spectrum to take his best shot when he is on a manic and threatening to hurt you. Drew took his teacher seriously and hauled off and slugged him the other day. one day suspension. Last night Drew and I were talking and he was tell him that the other kids in his class find him annoying because of his Tourettes. I am looking for a book that will help his class understand. He admitted he is having trouble making friends and wishes there was a way to homeschool but have a different teacher. Not sure how that one would work. But I plan on asking about it.

Scott has been out of town this weekend- annual conference in Denver. Drew spent one night with Amanda and Julie - What do I do get? a 102 degree fever. Slept a lot, drank lots of water. Woke up this morning with a barometric migraine to top it off. Today we pick up Scott at the airport, I want to run by Joanns for their coupon commotion. There are several large ticket items I want to get that I have coupons for making them 40-50% off. Scott is home this week, I have a spinal tap on Thursday and then Scott leaves Saturday for an entire week. Should prove to be interesting. My legs don't want to work and I find myself "tripping on them" more and more. The trouble swallowing is becoming more noticeable especially when I eat soft things, like bread. I can't wait to figure this out. Until then I go forward one day at a time and know that God is watching over me and will be with me no matter what He has planned.

Thursday, March 03, 2011

more tests

Well the tests aren't over. My GP ended up firing my neuro doc this week and is taking over my care on this issue until we can get into another neuro doc in a few weeks.

I had the nerve conduction test and according to the old neuro doc there are abnormalities but nothing he "can hang is hat on" Needless to say Scott and I were very frustrated.

My doc has ordered a lumbar puncture for next Thursday. Note the sarcasm when I say : I can hardly wait.

I see a new neuro doc the 23rd. I am hoping this one takes me seriously and listens to what is going on.

decent bedside manner would be a plus.

thought for the day

The road of life has so many twists and turns and obstacles, it is good to have family and friends to help us navigate the difficult ones and celebrate the good ones.