Doing it MY way

So, last time I spoke to you all, I had told you that Carson would be under going behavioral therapy, Right?

Well, me, myself, and I (Leigh and Alton, too) decided that what Carson does is not "behavioral" it's sensory. So, I've decided to set her up with an occupational therapist who has a background in sensory integration and will preform an evaluation and provide therapy.

Carson will start next week. I will post how things go.

Home Page

Today I got an email stating that our pictures were up on The Littlest Heroes Project site!! What I didn't expect to see was our picture on the home page!! http://www.littlestheroesproject.org/Littlest_Heroes_Project/Home.html How Exciting!

Then, If you go here, http://www.littlestheroesproject.org/Littlest_Heroes_Project/Our_Heroes.html

You will see the 3 kids pictures and brief stories.

We are still waiting for our picture CD from the session. I am dying to see ALL of our pics.

Answers.

Sorry to keep everyone waiting, but it has been a long day. We are now all up at the lake for a peaceful weekend.

So, what happened with Dr. E today? For starters ,we've been blessed to hear that it is NOT neurological!!! Dr. E believes that it is a form of sensory processing disorder. Which means that she will have to undergo intense behavioral therapy to control the rocking, head banging, running, jumping, flapping her hands, hard to control, behavior.

At one point, I thought I was going to slap the man silly. After showing him the video of Carson rocking, he says to me," you allow her to rock like that all night long?" Yes, I do, because I am a mother of 2 sets of twins (ages 3 and 6) and can not SLEEP all day long after being up all night trying to stop Carson from rocking. Good Gravy. I guess I know what I'll be doing on those nights I can't get my brain to slow down enough for me to sleep!!

So, this is where we sit for the moment until she is evaluated by the behavioral therapist.
At least it is a direction to move in. It's a start and it is all I can ask for at this point.

Answers?

Carson and I are off to GB to day for our new neurologist appointment at 2pm.

Wish us luck!!!

Hi /Lo Thursday

This post is part of "Hi/Lo Thursday" on the Riggs Family Blog. Check out their blog to read everyone else's "Hi/Lo" posts and for a chance to win $100.

My Hi is that we are seeing a new neurologist for Carson on Friday. I have hopes for a resolution for her violent rocking (see 2 post below)I have hope that we will be lead in the right direction.

My low has been my battle with what could be causing the rocking. I am not at the point that I can accept that she rocks just for stimulation. There has been talk (and research) of Sensory prosessing disorder, ADHD, theand possibility of tramatic brain injury from the 2 skull reconstruction surgeries she has had.

I hope that next week will be better.

The Littlest Heroes project - PUSH

The Littlest Heroes Project is a non-profit based organization founded in January 2008, made up of professional photographers nationwide that provide free photo sessions to our nations Littlest Heroes. This is our way of giving back and taking a stand for these children who sometimes feel forgotten because of their illnesses. We are here to let them know that they are heroes to many, and to share their inspirational stories and photos with the world.

If you have a child, or know a child, who suffers from any type of serious illness or life altering disability we are here to help. The Littlest Heroes Project provides you with a complimentary photo shoot for your hero and family. Please read the information on this site and be sure to contact us so we can help pair you up with a photographer from your area. The whole family ... Super Sibs and the Brave Parents are welcome to participate in the session as well!

Eligibility for the project:

Any child or young person (Infant-21) that is currently fighting or has fought or suffers from any of the following: Autism, Alopecia, AIDS, Bell's Palsy, Cancer,Chiari Malformation,Cystic Fibrosis, Cerebral Palsy, CHD,Childhood Stroke, Servere Diabetes, Down Syndrome, HIV,Immune System disorders and diseases, Kidney Disease, Muscular Dystrophy, Neurocutaneous Syndromes, Osteogenesis Imperfecta, Shaken Baby Syndrome, Sickle Cell Anemia, Spina Bifida, Tay-Sachs Disease, and other serious childhood illnesses and life altering disabilites.

Need a prayer? Or for a friend?

We participate in "Pray for Me... Pray for Others" on the Riggs Family Blog. Check out their blog to add your prayer request. Join a community of friends who care about you, and hope you will care about them.

Carson's rocking

Here are 2 videos of Carson's rocking behavior.

http://www.youtube.com/watch?v=OgatAILw09o

This second one is the one that goes on all night long

http://www.youtube.com/watch?v=x5tCw_31eIc

H E double hockey sticks

Facts:

1. I can't sleep. I have been having issues with sleeping for about the last 2 weeks. There is too much going on in my brain and I can't get it to slow down enough for me to sleep.

2. I am supposed to be on a diet, except for the last few weeks I have been eating everything in sight.

3. It's come to my attention that I may not find resolution for Carson. It maybe a fact that there may not be any treatments, therapy, or whatever for her and I will have failed her.

4. HOPE - I am supposed to be holding out for HOPE - that they WILL find a resolution for Carson and we will all be in a better place because of it.

5. Did you know that Sensory Processing Disorder is on the Autism spectrum? And even though she may not "test positive" for autism, she has a number of autism traits? Just a fact.

6.That I feel like a failure to my children because I can't help them in ways that I should be able to.

7.That I feel like I am writing this stupid blog for all my imaginary friends because no one comments any more.

8. That I am not sure if taking K and C out of Dr. F's care is truly the best choice I have ever made, and if so What do I do about R? Keep my foot in the or let it hit us in the ass on the way out?

9.That I get so irritated when all 4 of my children see a Miller Lite beer sign and start chanting "Daddy's beer, Daddy's beer......" in harmony.

10. That I am so tired of fighting with kids, husband, and doctors...why can't they just all do what I ask?

11. That the back of my neck and shoulder have felt like cinder blocks for the last 2 week and the never mind the splitting headache that bounces back and forth between all my thoughts.

12. That I have been a lousy cranio sponsor the last few weeks because I can't keep my own shit together.

13. That I feel like it's been my calling to help others out in a time of need and push my own shit far back in the corner and reclaim it much, much later. But can't. See # 12

14. That I want so badly to seek out the NS in Iowa, but don't want everyone to think I have totally lost my marbles, and am just taking my children on a joy ride. BECAUSE I'M NOT!

15. That St. Jude's research hospital is not for chiari or cranio kids. Neither is the Shriner's hospital. So stop asking me to look into it please. Thank you.

16.That rocking violently back and forth is not NORMAL. Especially when she knocks a picture off your bedroom wall.

17.That I feel like I am running around in circles and am getting no where quickly!


That's all.

Is it Friday yet?

I can't even express how excited I am for Friday to get here!

Finally, Carson will get in with Dr. Edgar, our new neurologist. I am hoping he will shed some light onto why Carson is "the way she is". We have heard really good things about him and we hope he can give us some resolution.

Something else I want to mention.... My girlfriend, Leigh, who works with children with special needs, attended a conference last Friday and the PhD speaker spoke about Sensory processing disorder. Leigh is very familiar with Carson and her rocking/ banging issues and she said this disorder fit Carson to the "T".
I am interested in bringing the topic up with Dr. Edgar on Friday to see what his thoughts are.
I have so many questions and have high hopes for answers.

Also, Last week I switched Keegan and Carson chiari care to Dr. Iskandar at the University of Wisconsin - Madison. He welcomed both kids with open arms. The reason for the switch? For one, it's closer to us. It's only a 2 hour drive instead of a 4 - 8 hour drive to the Univ of Chicago. And second -our insurance covers it!
However, because Dr. Frim operated on Riley, I will keep Riley in his care for a awhile longer. Dr. Frim and Dr. Iskandar are "good pals" and if there are any issues with the care, I am sure the 2 will talk.

So over all, for the first time in awhile, I am feeling good about the kids care.

Did I mention it's only 21 more days until Matt and I leave for Mexico - by OUR SELVES for a week?!?

P.S - Hi Jerry and Annie!

Happy 1 year post op, Riley!!!

1 year ago today, I put my scrubs on and walked Riley into the operating room for the first time in her little life. It was a hard surgery for her both physically and emotionally, but she pulled through like a champ. You've come along way girlfriend! I am so proud of you!!!

Prayers Please!!

Ok people, I need some major prayers right now. I need a show of hands who can help with prayer chains!

First: My friend Michelle and her daughter Lindsay need major prayers. Lindsay went in for surgery today at 11:30 for a shunt. It was supposed to be a 6/7 hour surgery, but at 2:22 pm I had gotten a text from her that the surgery was aborted. Something happened and they had to get her out of surgery. So that' not good!

Second: My girlfriend Molly's little girl Marin is going in for kidney surgery tomorrow (at the same hospital Michelle's Lindsay is at)

Third - For my girlfriend Jen who's little boy Jake has just been diagnosed with Chiari. He has a syrinx and a 15 mm herniation. He will most likely be having his decompression surgery before the end of the month.

Thanks for all you help!

And the Enfamil winner is.......

LOST A SOCK!

Thanks to the 3 of you for playing! I was having a hard time choosing, so I had the kids place your names in a hat and had Carson pick one out.

You ladies are all so lucky to have a new addition to your families!

CONGRATS!

Why is it everytime we see a surgeon they insist on seeing us in the OR?

Riley had her appointment with the dermatology surgeon in Milwaukee this morning and I was hoping for some boring news, except that not what I got.

Riley was born with a funny birthmark on her forehead and we just never thought anything of it UNTIL 2 months ago when it started changing shape, texture, and color.

This spot is called Nevus sebaceus of Jodassohn. Children are born with it. It starts to change as the kids get older and can possibly be dangerous as adults. Except, Riley's is looking like it would be as an adult, so she needs surgery to have it removed. They will test it for cancer and we should have answers 2 weeks after it is removed.

EXCEPT - Riley is TERRIFIED! She doesn't want brain surgery again and is deathly afraid of them leaving something behind.
How can a surgery that is supposed to so simple TERRIFY a 6 yr old so much? I know, many of you know.......I just need to figure out how to help her through this.

Today, they made her put on a gown in the dr's office - she FLIPPED! She hasn't had to wear a gown since Feb 13th 2008. She wanted nothing to do with it!

I cant even imagine what she is feeling. I do not blame her one bit though for being scared.

I just need to figure a way to get her though this. Please keep her in your prayers.

Photo session

Hi there!

Today we had the most PERFECT day! We went for our photo session with the most wonderful photographer, Aubrey!
We were connected with Aubrey through The Littlest Heroes Project - and it was nothing less the SPECTACULAR! She was fantastic with the kids, she had wonderful ideas.....It was just a truly amazing experience.

Thanks Aubrey for all that you have given us!!

To see a sneak peek at our photos, go here: http://photobyaubrey.blogspot.com/

For you from Wisconsin, if you scroll down on Aubrey's blog, you will see wedding pics right after ours - It's of Teresa Halbach's brother's wedding.