Tomorrow, my little friend Gabby will be in surgery for her craniosynostosis. Please keep her and her family in your prayers. Please say a little prayer for Dr. Jensen as well.

Not much going on other than trying to get Riley ready for her surgery on Friday. I have no doubt that things will go fine, but she is a bit nervous.

Please keep her in your prayers on Friday. Dr. Lyons too, please.


Info & updates

Just thought I would post an update.

I received a call from Dr "I's" nurse the other morning (new neurosurgeon appointment in Madison) asking if we wanted to bump up our appointment. They had opened another chiari clinic on April 10Th and called to see if we wanted in. Yes! Of course we do!

Riley is having surgery next Friday (April 3rd) to remove a "funky" birth mark" on her forehead that has changed shapes and size. They will be testing it for skin cancer.

I've gained a traveling partner out to Johns Hopkins at the end of the April. My girlfriend Jenni, who's son just had chiari surgery 2 weeks ago, is interested in going out with us to help and to scope out the facilities as well. It will be nice to have a friend along.

Keegan had been complaining about seeing "black fuzzy's" in his vision, so we will have him seen by our favorite"eye doc" at children's. Hopefully it is nothing, but you never can be sure.

Boy, it sure didn't take Matt and I to long to get back into the swing of things around here!
Thanks mom and dad for holding the fort down while Matt and I were on vacation!

I also wanted to thank everyone who has shown support to Matt and I with everything that has been going on around here. It means a lot to our family.


Who's your HERO?

Do you have 1 certain person? Or are you like me where I have many ( my 4 kids, Dr. Jensen....)

On May 1st, I am hoping to add one more HERO to my list - Dr. Ben Carson at Johns Hopkins.

Many of you may have heard of him. There is a book out and a movie called "Gifted Hands - The Ben Carson Story" on TNT. It was fantastic! I am so hoping he will be the answer to all of my prayers.

Carson and I will make our way out to JH in Baltimore, Maryland at the end of April. I can't wait. The thought of having a doctor who is up for the challenge just makes my heart smile. I had been throwing around the idea of going to other neurosurgeons around the Midwest, but I had decided to go right to the top. As many of you may know, my girlfriend Kaci, who helped me through Carson, Cooper, and Riley's surgeries also uses Dr. Carson and they love him. Her 2 children also have cranio and chiari as well. She, and her experiences, had a big impact on our decision to see Dr. Carson. Thanks Kaci!

So, until then, we will still see the doctor in Madison. That will be on April 23rd. I will keep you posted as things get closer.

So, drop me a line and tell me who your HERO is.



Here are a few pictures from our trip!

We had a great time!! Something that I was not able to catch on the camera was the earthquake tremor we experienced! I was told by my aunt that Acapulco has about 2 -3 "tremors" a month, but that one we experienced was a "good size". Let me tell you, it was like nothing I had ever felt before!! Now, I am glad it was something we got to feel.

Oh, so good to be home.


Well, after a long day of travel yesterday, we are finally home.

It was good to see the kids and my parents this morning. We dug out all of their fun goodies and watched them open things like it was Christmas!

I think they missed us, just as much as we missed them.

I will post pictures soon!



I am writing to you from sunny Acapulco Mexico!!! It is beautiful here. It has been in the upper 80's and just beautiful!!

I will post pics when we get home, but I just wanted to let everyone know that we are safe and we are having a great time!!

Hugs to you all!



We are finally on VACATION!! Whew. We are in Chicago tonight and we will catch our flight to Mexico first thing tomorrow morning! Fun in the sun, here we come!!!

Back to business. Carson had her OT appointment yesterday and we got little to no answers. I have a few things up my sleve that I am looking into for our next move. I am just not ready to post it here.

Ok...We'll it is 10:18pm and I have to be up at 4pm. Better get my buns in bed!

I will touch base when we get to Mexico!!


Jenni / Kaci

Good Snowy Wisconsin Morning to you all.

I just wanted to share a few things.

My girlfriend Jenni and her husband Kirk are going to need serious prayers today and for the rest of the week. Their 6 yr old son Jake, who is also a twin, is having his chiari decompression surgery tomorrow. Please pray for strength for Kirk and Jenni, and please watch over Jake and Dr. "I". It will be a long day tomorrow for them all. Jake is having an MRI this morning, and then will be able to rest up for tomorrow . I will let you know how things go.

Second, My girlfriend Kaci, my mentor for Carson and Cooper's cranio surgery way back when, has written a book about their struggles with Craniosynstosis and Chiari Malformation. Here is the link if you are interested. http://www.authorhouse.com/BookStore/ItemDetail.aspx?bookid=56046

today is our 2nd appointment with OT. I am hoping to get some major answers.

I will report more later.


Show time

I have been a big fan of "one true media" lately. Here a few that I have done of the kiddos.

Carson and Cooper's birth:

Riley's Chiari surgery pics:

Carson and Coopers cranio surgeries:

Because these videos have music to them, if you scroll down my blog, on the right side is my music list - you can pause the blog music.



Hey, How's it going? Yeah? That's just great! I am so glad to hear it. Now excuse me while I go vomit in a paper bag!

I just wish, for ONCE in my LIFE that things would be written in BLACK and WHITE! Not in craypods and easy to smear!

Hummmm, should I start with the really exciting news or the frustrating news??

I like GREAT news so I will start there. I met with Riley and Keegan's teacher the other night at a school function (because conferences are next week while Matt and I are in Mexico) and she had nothing but fantastic, positive news to tell me. The best part of it is my that my 6 yr old daughter has poked a hole in her shell and she is starting to bloom. She is especially taking off with her reading (which if you know me, I hate to read so I know she did not get it from me - she got her swimming abilities from me, that's something, Right?) She is reading at a 2nd grade level. She and her best friend Hannah are the only 2 in the class that go with a different group outside of the class to read! I can't tell you how excited I am. It was last year at this time that I thought that my traumatized little girl would never come out of her shell again. Boy, she's shown me a thing or 2! Way to go Riley!

Keegan is doing well too. He is reading at a 1st grade level and and is leading his kindergarten pack. YIPPY!

Ok, now for the not so great, confusing news. Carson had her appointment with OT today and she did everything just fine. Let me write that again. She did everything JUST FINE! Most people would be happy with that, but it confuses me to no end. Today was only part 1 of the eval and will continue to part 2 on Monday. But at this point, the OT was hinting, not suggesting, but hinting that is could be chiari related, not a sensory issue. Ugh. I sure hope she has a few more definite answers for me on Monday!

Did any of you catch Oprah a few days back? It was about a little girl who's parents locked her in a room for many years. She was under weight, mentally retard to some extent, and had other issues as well. Well, she also rocked, but instead of rocking back and forth she rocker left to right. Also, her adopted family had a pool in the back yard. She loved to swim and especially loved to be UNDER water. Where am I going with this? this little girl loved the pressure she felt in her head when she rocked and loved the pressure that she felt on her ears/head when she was under the water. Carson does the under the water thing too. During her swimming lessons (that we are currently taking) she spends a good 50% of the time under the water. So, now I just have to figure out what Carson's deal is with the "underwater pressure". What does it do for her?

I don't know.

I am so lost.

Does any of this even make any sense?

*** Also, I forgot to update you last night about Danielle's daughter who underwent surgery yesterday. Aniyah did just fine. She has had some issue with keeping liquids down, but for the most part is doing well. Thanks for all the thoughts and prayers.


Updates and prayers

Thanks for all your prayers for our friend Lindsay. She came through surgery alright, but has had a TON of pain due to the fact that she couldn't have the certain med during surgery. Please pray that she is pain free soon!

I have another request please.
*My friend Danielle and her family are struggling today. Her little girl is undergoing her cranio surgery today (7:45a Milwaukee time). I just got a text that she was just taken into the OR. Please pray that surgery goes well, that God watches over Dr. Jensen and his hands, and that she is in recovery before we know it. I will post tonight when I hear from Danielle.

Thanks again for all your help!



I have a prayer request for a little girl named Lindsay Hartman along with her dad, Daren, and mom, Michelle...a few weeks ago Lindsay left her parents at the 'red line' to head into surgery for a shunt (her 1st trip to the OR for chiari...but has siblings having made the trip))....as it goes with us chiari parents, we say our good byes and do 'our thing' as the hours begin to pass until we will see them again...just as Darren and Michelle had finished lunch...a hospital bldg. over past a maze of construction obstacles....a call came in on her cell phone...the call every parent absolutely fears, the one which brings you to your knees....something had gone terribly wrong in the OR and they were needed immediately, by Dr. Frim....the call went to voicemail b/c of reception....once a connection was made as they sprinted to the OR they were not told much of anything but to hurry! It would come to be known that Lindsay had a very rare, no way of knowing severe allergic reaction to a med given to her for the surgery, which nearly claimed her! By the grace of God the team recognized it promptly...Lindsay came through with no added problems!!
Tomorrow Lindsay will cross the 'red line' once again to have her shunt placed (7:30 Chicago time)....this time the med will not be used....to keep things less confusing, surgery minus this drug for shunt placement will leave her with a ton of pain....Please pray for Lindsay- safety and low to no pain :)...for her folks- peace....I cannot even begin to imagine!!!!

You may follow their journey at - www.caringbridge.org/visit/gabehartman

(Thanks Lisa)