Poem and Pictures

Chiari l: Imagining A Patient's View

So I Say
Another headache
The third today

We all have them
So they say
I’m getting dizzy
My vision blurred
Your getting older
Don’t be absurd

I’m staying home
Too tired to go
Go see your doctor
She should know

Too many symptoms
You must be stressed
Take medication
And get some rest

I cannot think well
Can’t find the words
My memory slipping
My speech gets slurred

We’ll get a scan
Since you insist
If we find nothing
Please don’t persist

Don’t make me laugh
Don’t make me cry
It hurts to strain
I don’t know why

Your scan is fine
By report today
Incidental Chiari
So they say

Incidental
What do you mean
By a doctor
I have not seen

It is anxiety
That makes you so
The world is stressful
I think you know

I pulled away
Gave up, or such
Until the pressure
Became to much

I waded through
The Internet
Fearful of loosing
What I had left

It took some time
To come to know
My brain is hanging
Down too low

With every beat
The fluid flows
Deep in the brain
To the opening below

The rush of fluid
Seeking release
Finds cerebellum
Which makes it cease

The pressure spikes
My head explodes
It makes such sense
Now that I know

Working together
We’ll find a way
To make it better
So I say

by John Oro’, MD



Amanda and I

She has triplets and 1 singleton. We delivered 10 days apart from each other, our babes were all in the NICU together, and her daughter also had cranio surgery. I do believe God made us friends for a reason!

I promise

I know I promised some pictures of our fun play date with my friend Amanda (who has triplets and a singleton), but I'll save that for the next entry.

Thanks to a new chiari friend, Lacie, I came across this live, in detail, maybe to much for some of you to handle, video of a decompression surgery on her blog. It is VERY cool! It totally gave me a better idea of what Riley's surgery was like. Here is the link if you are interested in watching. http://youtube.com/watch?v=OoCmYjfWus8
It's a bit long, but totally worth it if you have the time.

The Lone Ranger

I am so excited.

I KNOW I am not a expert at reading MRI's, and I normally discuss with my few chiari girlfriends, but I DO believe I may have a LONE RANGER!

I do NOT believe that Cooper has chiari malformation! YAHOO!!!
Wouldn't that just be the best news ever!!!

Here is Coop's from this morning:

Here is Keegan's: We already know he has Chiari.

If you are looking to compare, check out the base of the cerebellum (base of the skull.)

Just for reference, you can see Keegan's cerebellum crowds the spinal cord and comes to a point by his vertebrae. Cooper's (first picture) on the other hand does not crowd or point.

I know, medically, that wasn't a very good description, but it gives you a general idea of the area we are talking about.

* Note: Just watch, I'll get the results from the radiologist and it will say HE DOES have chiari. It would be JUST MY LUCK!

Check back tonight. I will post another entry from our play date yesterday with my girlfriend Amanda and her 5 yr old, and her 2 yr old triplets! It was a HOOT!

Results? Maybe

Sorry for Keeping you all waiting for Carson MRI results.

Let me start by saying I won't rest until it is read by our NS at our May appointment.

Carson's MRI of her spine came back normal. They didn't see a syring, they didn't see a thethered cord, and they didn't see a chiari malformation.

Wait, back up.

Yes, I said they did not see a Chiari Malformation. Well, we all know that is not correct, because she has already been diagnosed with it. So, I know the other 2 things maybe easier to see, but I think I will hold my breath until our appointment in May if you don't mind.

2 other updates -

May 15th we will be back in Milwaukee to see our favorite - Dr. Jensen.
Because Carson now has chiari, we would like to keep everyone in the same loop. Especially now, because we still are not sure if she will need another surgery to help close the holes in her skull from the CVR.

Also, while talking to Jensen's nurse, she suggested that we may want to see someone in the Genetics department. So, I think we will. Maybe we will find some answers.

My mom also asked me today if I thought it might be a good idea to seek out my biological parents. You know, I really don't know. In my eyes, the damage is already done (cranio and chiari). What do you guys think?? Do you think I should try and seek out my biological parents for more answers??

Carson

Morning, well, it actually feels like 5 pm since I have been at the hospital with Carson since 5:45 this morning! UGH.

Anyhow, she did really well with her MRI. I hope to hear something by later this afternoon!

Let's keep our fingers crossed for good news.

Another Child

Thanks to my friend Kristen, She reminded me of another sad story of a strong boy facing the "ugly demons" of Chiari Malformation. This is a story about Gaby. Kristen and I met Gaby's mom, Beth, for the first time in February, along with our friend Michelle.

Please go check out these links. These links are of children who are trying to beat this ugly disease.
1. Gaby - his page is: FAILUREISNOTANOPTION (Seriously, you need to read this one)
2. Nick
3. Gabe - Riley's buddy who is also a twin.
4. NJ
And last but not least...
5. Riley

When Riley was released from the hospital in Feb. we returned to th RMDH and we met up with Michelle (Gabe's mom), Kristen (NJ's mom), and Lisa (Nick's mom) (YES, we were ALL there at the same time!). Kristen and I were are the opposite end of the spectrum as Michelle, Beth, and Lisa, but it was nice to sit and chat with them about their journeys and to get an idea what other people have been going through.

I should have realized that Frim was AWESOME when I checked in at the the RMDH house the very first time. The lady sitting at the desk asked me if I was here for an appointment or for surgery. I said, "an appointment". She quickly replied back with, " Oh, with Dr. Frim".
Every time we've been to the house, I would have have to say a good percentage of the people there are seeing Dr. Frim. It's truly an amazing feeling knowing that you are being seen by the best of the best for chiari treatment.

Oh, and the other day I was cruising through Barnes and Noble and found myself in the medical isle. I walked past a book called, "the top 100 specialist in the US". I picked it up, paged through until I found NS, and there he was.

Something tells me, we need to stay with this doctor!!

Oh what to do

I'm telling you, if it's not the kids health, it's the stupid insurance company. I am stuck. I feel like I am stuck between a rock and a hard spot.

Here is the situation:

We have a 2nd insurance on top of our primary to help with all the kids medical issues. So far, it's been WONDERFUL! We have seen little to no bills from everything that has been going on. UNTIL, Riley surgery.
At the hospital we were told that they had put an authorization through to our secondary, but it was denied. So, here come the medical bills. I have no idea how much we will end up paying for her surgery. We are already at $4100. And I have no idea if that is it or not.

So, here is the problem. I have at least 2 more children - Cooper is TBD, that will need to be seen for their chiari. Is there a possibility that those 2 may need surgery? I don't know. But, I do know that we can't afford to pay $4100 +(each) for 2 other kids surgeries.

Now, there is another doctor in Wisconsin who does chiari surgeries. Is he as good as our current neurosurgeon? I don't think so. Has he done the surgery? Absolutely. How many? I don't know.
If someone comes to the Wis. surgeon with chiari and wants a second opinion, the Wis surgeon will send them to our NS in Chicago.
So, do I keep my children with the best of the best in treating chiari, and try to stay afloat with the bills, or do I send them to another local surgeon who may not do as good of a job and only have to worry about slim to no bills?

It is hard enough having to watch your child(ren) go through surgery. You should not have to worry about how you are going to afford your child, and their condition after surgery.

On top of this......I have heard of a few stories, 1 in particular - about a young boy, Nick ,who had chiari surgery done by another NS, and the NS screwed up and just about kill this poor child. They are now seeing the same NS that we are. His mom told me that they have been coming to Chicago 1 week out of every month for the last 4 yrs (they live in Ohio). To date, this child has had 11+ brain surgeries in the last 5.5 years. Please check out Nicks link and read "My Story". It is truly an amazing story!

So now let me tell you - I have no idea what to do!!!

Get this....

I totally forgot to mention in my last post that one of the Birthday Faries and I share our birthday.


HAPPY BIRTHDAY MR. BRITHDAY FARIY!


So, Matt surprised me at lunch today. He told me we were taking the 3 kids (Keegan was in school) out to lunch. So, he picks us up at home and we are off, but not out to lunch. We went to get this =>

The Joovy Caboose

I love it! We put Carson in the front, and Cooper on the back seat belted in and it was WONDERFUL! Thanks Matt and crew for the wonderful new stroller!

* Molly ~ I would highly suggest this one!

Happy 34th Birthday to me

Last weekend we celebrated my birthday with everyone else at the lake. So today, I don't expect much to happen.

Also - the PATIO FURNITURE FAIRIES answered my wish. The fairies answered with a 12 piece patio set!! Holy Smokes!!!! THANK YOU,THANK YOU, THANK YOU Birthday wish fairies!!!!!! Now, can you do something with the size of our deck?? ( just kidding!!!)

Thank you mom and dad for all that you have done for me the last 31 years!! It has sure been a wild ride! Love you!

MRI's

Both Carson and Cooper's MRI's have been scheduled.

Carson's spine survey will be on April 21st at 5:45 am.

Cooper's repeat MRI will be on April 24th at 6:00am.

Keegan had his swallow study today and things looked to be ok. That's the good news, but complained all day that his legs were hurting him and he was even beginning to limp some.

1 foot in front of the other.....

My mom always used to tell me, "If you don't have anything good (nice) to say, don't say anything at all." I am about at that point. I have been busy putting one foot in front of the other and I am at that point. I just don't have anything good to say........

So, here are some pictures from the last few days.

Snow man at the lake

Never leave a CRAZY 2 yr old with a sand box full of water.

Something bad is sure to happen

Good bye Disney, Hello new roof!

Plan of attack

I guess I'll start with the best patient and move down the line~

1. Cooper - (borderline chiari) I got an email from our NS tonight stating that it might be a good idea to have him rescanned. The MRI that we sent was from 2006 - right before his cranio surgery. A lot may have changed in almost 2 years and a total skull reconstruction surgery later. I guess we will have to hold our breath to see if he will be the minority. He will probably be seen by the NS on May 8th.

2. Keegan - (Chiari) Goes in tomorrow for a swallow study. It will tell us if he is aspirating like Riley had been or not. He has been complaining about leg pain. I am not sure what path we'll take with him yet, but he will also be seen on May 8th.

3. Carson -(Chiari) She will be having a spine survey MRI done soon to detect if she has a syrinx (Syringomyelia (IPA: /sɪˌrɪŋgoʊmaɪˈiːliə/) is a generic term referring to a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the spinal cord.) or not.
Our NS mentioned to me that this could possibly be the reason why she is rocking and thrusting her back/head into things. He did mention that he has seen children who have had rocking issues, and the rocking has resolved it's self after surgery. Does this mean she'll be the next to have surgery? I don't know. She will most likely be seen on May 8th

4. Miss Riley - (Chiari, decompression surgery done on 2.13.08) Riley seems to be healing pretty well. Her incision area still seems to be a bit red, and it itches, but other than that, it's her only complaint. I do believe she is going to need the help of a counselor, or therapist because something happened after the surgery and she is no longer my outgoing, self confident little girl. She cries a lot, she afraid of a lot of things, and just plan not herself. I don't think it will take much, but a think a little help will go a long way for her. She will have her 3 month post op appointment on May 8th.

So, that's it. That's where we stand right now.

I will post the results of Keegan's swallow study tomorrow.

Add another one to the list

I received info this morning from Dr. Frim on Carson and Cooper's MRI's.

Please add CARSON to your list of prayers. She too has Chiari Malformation.

As for Cooper, he has tonsils to the foramen magnum but not through it. So, we will add him to the watch list.

Seriously, things have got to stop at some point, right?!!!

M.O.C.K

Thursday, I will turn 34 yrs old, and I feel there is a huge part of me missing.
Matt and I were married in Aug. of 2000. We were like any newly wed couple. We had fun, we grew as one, and we were free to discover our hopes and dreams.
In 2003, our first set of miracles arrived. It was tough being new parents of twins - heck it would have been tough as new parents of ONE! But God blessed us with 2 beautiful babies and our family grew. We were no longer MAN and WIFE, but instead, FATHER and MOTHER. When we weren't sleep deprived, we'd look back and remember that special day when we became MAN and WIFE.
Life was challenging with 2 babies, but for the most part, healthy babies.

I feel as if our life started to slide when Riley had her first overnight stay at Children's hospital. It was truly amazing how far this child could vomit.
It was the first time my "virgin" ears had heard the words PROJECTILE vomiting. WOW, did she have the distance! It was also the first time hearing the words Child and SURGERY in the same sentence. PYLORIC STENOSIS I believe is what came out of the on call doctors mouth. The doctors told us that they needed to monitor Riley and do a scan of her inners. I will never forget when they took her from my arms, and told me they needed to start an IV. 5 minutes later, They came out from behind a door, and I busted into tears. Riley had her IV in her scalp. I cried, and cried for my sweet child. It was the saddest thing I had ever seen!!
Luckily, the test came back neg. and no surgery was needed.

Back then, I felt so fresh, so new, and everything made me cry.

Little did I know where this life would lead me.

In 2005, Carson and Cooper were born 9 weeks early. I struggled with the decisions that needed to be made, but I was no longer a NEW MOTHER, but and EXPERIENCED MOTHER and Matt was and EXPERIENCED FATHER.

From November 15, 2005 until Nov. 15th, 2006 we had become Children's hospital experts! Matt and I had been through - 39 days in the NICU, Cooper's hernia surgery, Carson's cranio surgery, and Cooper's cranio surgery (Never mind all the doctors appointments in between).

From 2006 - 2007,we endured Cooper's 7 day stay for rota virus, Carson's tear duct stint surgery, and Carson's ear tube surgery. Keeping up? Good because I am surely losing track.

And now, 2008, we've already had 1 (decompression) brain surgery, (1 sponge removal surgery ) with a possibility of a second.

In August, Carson and Cooper will have their 2 yr check up and CT for their Craniosynostosis. As of August of last year, both kids had very large holes yet in their skulls. If these holes do not close themselves, You got it baby.....we could be looking at a possibility of 2 more surgeries.

I am BURNT out! FRIED! I feel as someone has striped me of the emotions that I had the very first moment I saw Riley with the IV in her scalp!!! It is not fair for one family to have to go through the things that Matt and I have gone through.

Matt and I are not the same people we were in 2000. We're stiff, and at times, emotionless.
What ever happened to being free, free to discover our hopes and our dreams? This is not what I had hope for, nor is it what I had dreamed of.

It has made me, a stronger advocate for my children, and it has made me have a heart of steal, and it has made me a stronger person.
Through all that I have encountered, I have truly learned a lot. I want to help reach out to those who are first time parents, and their children are in the NICU. I want to reach out and help those parents who have just learned that their child has craniosynostosis, and I want to comfort those parents who are struggling with the ugly face of chiari malformation.

No parent should ever have to go through any of this, but if they do - I will be waiting with my arms wide open.

*For myself, Jill and Kelly, I would like to start a Fox valley area M.O.C.K group - Mother's of Chiari Kids. Let me know what you guys think and if you think you would be interested.

Poems and prayers

A Chiari and Syringo Prayer

I ask the Lord to help me, to guide me thru the day,

I ask the Lord to give me strength, to help me on my way.

I ask the Lord to help me thru, the pain I do endure,

To help me bear my burdens, and keep my weak heart pure.

I do not ask "Why me Lord"? for surely there's a plan,

For me and other's like me, even if we don't understand.

I said "Chiari and Syringo, Lord, have given so much pain,

Have taken so much from me Lord , that I can not regain".

And then a voice within my heart, said, "Look at what you have,

An old life gone forevermore, with so much more to gain".

"For a new life opened to you, Love, Comfort and true Friends".

"All understanding of your pain, and with you to the end".

I really thought about this then, and felt my weak heart grow,

For the Lord has Blessed me greatly, with something so many will never know.

A new life opened up to me, new Family, Friends, and Love,

To share my life completely, sending Prayer's,

Comfort, Understanding, And true Love.

And then I said "Thank You Lord, for all you've given me,

For every pain I suffer Lord, you've sent a friend to me.

For every cross I have to bear, I never bear alone,

Because, friend's help me carry it, however far, or long.

Be with us all, and guide us Lord, as we journey thru this day,

Give us strength to be there for each other, in each and every way".

"Thank You Lord"

By: Deb Risher




A Poem for Moms and Dads

Now I lay me down to sleep, I pray my sanity to keep.

For if some peace I do not find, I'm pretty sure I'll lose my mind.

I pray I find a little quiet Far from the daily family riot

May I lie back--not have to think about what they're stuffing down the sink, or who they're with, or where they're at and what they're doing to the cat.

I pray for time all to myself (did something just fall off a shelf?)

To cuddle in my nice, soft bed (Oh no, another goldfish--dead!)

Some silent moments for goodness sake (Did I just hear a window break?)

And that I need not cook or clean-- (well heck, I've got the right to dream)

Yes now I lay me down to sleep, I pray my wits about me keep, But as I look around I know-- I must have lost them long ago!

Fun info

Thanks to Nailgirl, I swiped this off my email and stuck it here.


Only Type One Word Answer:

1. Where is your cell phone? Diaperbag (it's one, right? lol)

2. Your significant other? Matt

3. Your hair? Short

4. Your mother? Energetic

5. Your father? Outgoing

6. Your favorite thing? Swimming

7. Your dream last night? Fun

8. Your favorite drink? Limeade

9. Your dream/goal? Rich

10. The room you're in? Office

11. Your fear? Death

12. Where do you want to be in 6 years? Here

13. Where were you last night? Lake

14. What you're not? Lucky

15. Muffins? YUM

16. One of your wish list items? CURE

17. Where you grew up? Appleton

18. The last thing you did? Danced

19. What are you wearing? Sweats

20. Your TV? Big

21. Your pets? Jake

22. Your computer? Necessity

23. Your life? Chaos

24. Your mood? Nervous

25. Missing someone? Molly

26. Your car? Suburban

27. Something you're not wearing? Contacts

28. Favorite Store? Target

29. Your summer? Busy

30. Your favorite color? Red

31. When is the last time you laughed? Today

32. Last time you cried? Comer

They FINALLY arrived!

I know many of you are waiting ever so patiently for the results of Carson and Cooper's MRI's.
We'll, we had a bit of a delay getting C &C's MRI scans to Dr. Frim.

2 weeks ago, I had called CHW to have them send Dr. Frim C & C's MRI's.
We'll, last Friday I had gotten an email from Frim stating that CHW had sent him C & C's CT scans, not MRI's.

So, another week went by with no answers.

Last Monday, Riley had an appointment at CHW with the neurologist, and since we were in the building, I got the MRI disks.

Tuesday, Matt had sent Dr. Frim the discs via FedX.

Yesterday, I received an email stating he had the scans and was able to view them!

Expect, I have no results yet. I should hear something Sunday evening or Monday morning.

The good news is.........the end is in sight.

1 week from today

A week from today...........IS MY BIRTHDAY!

I love birthdays!

This year, I have 2 hefty items that I would like. It's been a tough few months (and many more to come), I've done a lot of "giving" of myself , and I think I deserve something NICE.AND.BIG!!!

Here is my wish list ~

1. The Graco Quattro Tour™ Duo Stroller

http://www.gracobaby.com/catalog/product.aspx?modelNumber=6K00PRT3&CategoryID=2


The double stroller that I have now is on it's last legs. It's the same one I had when Riley and Keegan were born. It's 5 yrs old, been used a MILLION and ONE times, You can hear us coming a mile away, it's been left out in the rain, ran over by a car, we've had to get replacement pieces, I can't tell you how many soaking diapers have leaked onto the seats, how many times it's been barfed in.........you get the picture. We'll actually, to help you along....it looks A LOT like this...

Carson and Cooper are only 2. I am sure I am going to need a good dbl stroller for another good 8 years!

Next on my list ~

2. I need new patio furniture.

Our poor last set just took a long ride in the garbage truck!

So, between the 2, which would you want?

Does anyone have this "BMW" stroller? If so, give a shout! I would love to hear how wonderful it really is!

I've been TAGGED

1. Do you like blue cheese? Heck NO!

2. Have you ever smoked heroin? HELL NO!

3. Do you own a gun? Not now, but did when I was going throught the police academy.

4. What flavor do you add to your drink at Sonic? We don't have Sonic

5. Do you get nervous before doctor's appointments? Only at the kids appointments.

6. What do you think of hot dogs? They are OK.

7. Favorite Christmas song? Hmmm, there are so many. I love the Transiberian Orchestra; Christmas Canon - Me TOO Kristen!

8. What do you prefer to drink in the morning? Orange Juice

9. Can you do push ups? Yes

10. What do you order at Starbucks? No Starbucks - GLORIA JEAN!!!

11. What’s your favorite piece of jewelry? My wedding ring

12. Favorite hobby? Photography

13. How do you eat your eggs? Over easy

14. Do you have A.D.D.? Nope

15. What’s one trait you hate about yourself? That I LOVE to eat!

16. Your eye color? Hazel

17. Name three thoughts at this exact moment? Will Keegan need surgery for his Chiari? Does Cooper and Carson have Chiari as well? Will my life ever settle down?

18. Name three things you bought yesterday? 2 new Britax parkways ( car seats) for Riley and Keegan, and a few things at once upon a child.

19. Three drinks you regularly drink? Diet Dr. Pepper, OJ, and milk

20. Current worry right now? Do Carson and Cooper have Chiari?

21. Current hate right now? That it's April and still cold out!

22. Favorite place to be? With my family

23. How did you bring in the New Years? With my family.

24. Where would you like to go? Some place WARM!

25. Name three people who will complete this. Don't know.

26. Do you own slippers? Yes

27. What shirt are you wearing?My pajama top

28. Do you like sleeping on satin sheets? Nope

29. Can you whistle? Yes

30. Favorite color? Red!

31. Would you be a pirate? No thanks.

32.What songs do you sing in the shower? Nothing usually.

33. Favorite girl’s name? Ryann

34. Favorite boy’s name? Grayson

35. What’s in your pocket right now? I don't have any pockets!

36. Last thing that made you laugh? Carson.

37. Most frequently dialed phone number?My husbands cell.

38. Worst injury you’ve ever had? Busting my wrist rollerbladding.

39. Do you love where you live? NO.

40. How many TVs do you have? 5

41. Who is your loudest friend? ?????

42. How many dogs do you have? 1 black lab.

43. What are you thrilled about right now? That it's bed time!

44. Do you have a crush on someone? Matt

45. What is your favorite book? the bed time book

46. What is your favorite candy?chewy sprees.

47. Favorite Sports Team? Green Bay Packers.

48. What song do you want played at your funeral? Celebration

49. What were you doing at 12 AM last night? Sleeping!!

50. What was the first thing you thought of when you woke up? Shit, the roofers are going to be here any minute!

Ok, I tag ..... Michelle Z., Molly, Nailgirl, My4kids, and anyone else who wants to join in!

Extreme Home makeover

On April 6th, EHM will be airing the show on chiari malformation again for you that want to see it, or haven't seen it. It is very interesting!

Also, thanks to all of you who voted for our hospital - CHW. It paid off! They will be receiving a second fun center!

DEAL or NO DEAL came to town, well, actually Green bay, and yes, I was one of the crazies who stood in line for 8 hours to get my 20 seconds of fame! It was fun! I went with a co worker of Matt's and we had a blast! They didn't pick us, which was very sad, but hey - it was a day without kids, and adult company! What more could I ask for!!

No word on team B's MRI's yet. Hopefully tomorrow or Monday. I will post as soon as I know.

Up and running

Riley's godmother , Betsy, is in her 20's and has a new store up on the web. She has been designing and making really cool t-shirts.

Please go and check them out!
www.highlyevolved.etsy.com

I think at one point she even mentioned making and selling t-shirts to support chiari! How cool is that?!?

Way to go Bets -looks fantastic!