Let's throw some OIL on the FIRE

I have been chatting with our Neurosurgeon in Chiacago about Carson's symptoms and he has added another diagnosis to her chart. All you PTC mom's, I'm joining your group!

She has been diagnosied with Pseudotumor cerebri.

PTC - also called benign intracranial hypertension, literally means "false brain tumor." It is caused by increased pressure within the brain and is most common in women between the ages of 20 and 50.
Symptoms of pseudotumor cerebri, which include headache, nausea, vomiting, and pulsating intracranial noises, closely mimic symptoms of brain tumors, possibly because of the abnormal buildup of cerebrospinal fluid placing pressure on the brain.

Treatment for pseudotumor cerebri is generally symptomatic. Pressure may be controlled by removing excess fluid with repeated spinal taps or by shunting. Steroids may be prescribed to reduce swelling of brain tissue. Hyperosmotic drugs may be used to reduce fluid buildup.

This is why the CHW team is hesitant to say that the CVR surgery will help her pressure.

Oh Boy.

Mama Mia

OK, so how many 5 yr old girls do you know that know MOST of the words to every song from ABBA / Mama Mia??

Oh, Riley just kills me! Last night, my mom, Riley, and I went to see Mama Mia. It was my first time seeing it in the theater and the other 2 - this was their second time.

It was a HOOT!

We saw the play when it came to our local PAC, but this was 10 times better!! Oh, we had so much fun!!!! That movie makes me want to live my life differently.
It also makes me miss my girlfriends. What I would give right now to be with my girlfriends, being silly, singing fun songs, and just being a girl. I MISS IT!

Do you hear that girls!!!

I am so ready to have a girls night away just being silly!.

This life that I have been living is breaking me down. I am not sure who I am becoming. All I know is doctors offices, surgery, and waiting rooms. Matt and I are doing ok, but all we talk about is finances and doctors appointments. Who is going where when? It's like I need a flow sheet to keep everyone in check.

I HATE IT!!

This movie made me smile - the smile I haven't seen in a long time. It made me laugh. The laugh I haven't heard in a long time. It made me remember who I used to be - so free spirited, fun, happy.....

Thank you Riley and Nana for taking me to the movie last night! I had a great time!

Two years and sixteen days later

We finally have a date for Carson's SECOND cranial vault repair. It will be on August 27 th, 2008 at 7:30am. We have been told it will take 7 - 9 hours.

I have decided not to blog this surgery. I do believe this will be my hardest surgery to get through and want to keep it to close friends and family.

I hope you all understand.

I will be posting it Carson's caringbridge page for you that have that address.

What she needs most now is good vibes and prayers.

Thank you.

639.7 miles later - We're Home!

Ah, it's been a long week for Carson and I. (I am sure it's been one for my mom too, who has been in charge of the other 3 as well.)

After 639.7 miles later, we have 99.9% of the answers we went to seek out.

We saw Dr. K - NS at CHW and it was a very pleasant visit. We talked a bit about the ICP results and talked about what's to come next, and we both agreed that Carson needs surgery now. She is no longer sleeping through the night nicely. Meaning, she just doesn't rock, and go to sleep, wake up, rock, and go back to sleep. She is crying, screaming, and not wanting to lay flat..... which is all from the high pressure I am sure
She is more aggressive, easily gets agitated, is regressing - rocking on all 4's just like a infant learning to crawl. Not good.

So, while we were in the appointment, they called Dr. J, and they together agreed to meet TODAY to make a plan - when the surgery will be, what type of vault repair are they going to do? (believe me, none of the choices are pretty)
Dr. K is going to be out of the country the 2nd week of August so he may have Dr. Lee, or Dr. Lou step in. At this point, I can't worry which NS will assist in the surgery. All I can about is doing the right thing for Carson before her head explodes.

I am hoping that I will hear from Dr J's surgery scheduler today yet or tomorrow with the game plan.

Please keep Carson in your prayers as we go through another cranio surgery.

As for me? Don't ask.

Update on HELL week

Just thought I would post the first update from our doctors appointment in Chicago.

Today, we saw Dr. "R", who is the plastics surgeon, equivalent to Dr. "J".
He was VERY nice and Carson and I both liked him a lot. He and Dr. "J" are very similar.
He too, believes that Carson needs surgery sooner than later. He felt her head and when he felt the bump on the top of her head he said" yes, I believe she is going to need a redo".
So, here we sit.

We are now in Milwaukee getting ready for our morning appointment with Dr "K". We should get the info from the probe surgery and to see when they want to do surgery.

I will post again tomorrow night from the RMDH.

Hugs.

Going National

As many of you know I have been a member of our local Mother of Multiples club. The club is now part of the national group and every month the national group gets our news letters. Here is what was posted in the national booklet for the summer:

"I keep thinking about how we can keep our family and friends connected with our busy lives, especially with multiples. How do you stay connected? How do you you become better at getting connected? Everyone always was wants to see pictures with the Easter bunny, or just copies of scribbles from your two yr old. Recently, my grandfather was talking to my dad on the phone and asked why I had sent him 2 scribbles of paper of m twins fabulous Elmo pictures, and didn't write him a little hello note. My dad simply just said," probably because she didn't have time!" Well, It was true. I sighed. I thought enough of him to send a little scribble from each kid, and felt that was enough with the time I had at the moment. While I was listening to my dad, I thought to myself, hmmmmm....maybe a blog would be a good idea to start for the family. Well, It;s great but grandpa is 80years old and doesn't have a computer and probably doesn't know how to turn one on. What a wonderful idea, just not a good fit for our family.
Recently I read the the Fox Valley Mothers of Multiples newsletter and they showcased a family who has some health issues. One of the twins, Riley has a rare brain malformation , Chiari malformation. Her mother , Cindy was very resourceful. She uses a blog to keep families, friends, and her local club updated on Riley's health issues. I am sure with the overwhelming help, love, and concern, she has has saved her entire family such grief. FVMOM has kept it's members updated by posting the blog spot in their newsletter. What a unique and special way to pay close attention to a valued member and her family. Unique cases posted on the Internet via blogs are excellent avenues to allow other mothers of multiples to search. The Riley case was particularly unique because of the health issues being rare. By reading this, I hope that I touch someone else who may need this type of resource. By using the Internet we are very fortunate to research such rare condition and find others going through a hard time or just simply to chat when we are having a bad day. Check out www. coletwins.blogspot.com
The club has also made bracelets to keep up Riley's spirits. Kudos to the FVMOM club for their planning, dedication, and donating to such a wonderful member.
To Cindy, I ask that you keep blogging. You touched me and have inspired me. "

Thanks NB. What a wonderful article!
Post a comment sometime and we can chat!!

Tough enough to wear PINK?

HECK YEAH!!

Keegan had an appointment yesterday to see how his arm is healing. They took the SECOND cast off, x-rayed, and cast came back on! His arm is still broken and will need this cast on for another 2 weeks.

So, guess what color he picked? You got it, HOT PINK~

Riley had her post op swallow study today. It looks like she is starting to aspirate again. I am not sure what that means as in her Chiari, but I am sure Frim will let me know next week when I see him.

So, that's what's going on around here.

Post again before we leave for Chicago.

Discover Camp

Hi!

Sorry it's been a long stretch with out updating. We've been busy!

Our latest trip was to Dr. Frim's Discover Camp where we met a lot of really great families. All patiens of Dr Frims. I would have to say 98% of them are Chiari patients.





Riley and Keegan had a great time playing with the Hartman clan. Gabe and Lindsey are 6 yr old twins, and then there is Hannah who is 4, and Fayeth who is 3.


Riley and Gabe met for the first time at the RMDH right after her Chiari surgery. It was fun to see them catch up again!



Thanks Janet, Rachel and everyone who help make this camp happen!!!



Ok, Now that I have the FUN news out of the way, on to a more serious topic.


Starting next week, I will be living in Chicago for just about 1 week. Carson has an appointment with Dr. Reid, a craniofacial plastic surgeon, and then with Dr. Frim on Thursday.

I talked with Dr. Reids nurse today and she said Carson has been put on the "urgent" care list. She also thought that Dr. Reid and Dr. Frim talked about doing surgery (a second cranial vault repair - like she had when she was 9 months old) already at the begining of August. So, it sounds like it will be a bumpy ride again for awhile.


I will know more specifics after next Tuesday.

Our 4th of July

We had a great 4th!!

We did a little face painting...

Did a little "clowning" around

Watched a little bit of the Mid-Western Rodeo in Manawa....

And did a little "hot doggin'" around!

But most of all, it was fun just hangin out with the family!

Moving to Chicago

Carson that is. I have done a lot of thinking, Matt has done some research and we will be moving Carson to Chicago to be with Frim.

It makes more sense to me to have ONE set of doctors who will take care of her cranio and chiari. Not bouncing back and forth btwn CHW and University of Chicago.

I have been emailing Frim and he is willing to meet and take Carson's case on with his CF team. WAHOO! Something in my life for one is going to go a bit smoother! What's not to like about that.
Yahoo!!!

Roosters-N-Rickrack Pinafore GIVEAWAY!!!!

Roosters-N-Rickrack Pinafore GIVEAWAY!!!! (please click to see dress)

Isn't this the sweetiest dress? I just think Carson would be adorable in it!!
I sure hope I win!!!

Gain weight, Lose weight, REPEAT......

Oh my god. I can't even begin to tell you how this rollercoster is KILLING me.

It seems like I work my A** off to lose, and the minute I put my guard down I have gained. It just stinks.

I have been able to juggle a lot of things in my life, but for some reason I have not been able to juggle the stress of medical issues that are over taking our life and losing weight.

Down 90, up 30, down 20, up 18..........I JUST CAN'T WIN!!!

Does anyone have any tips for me? Because it's a cinch that neither will be going away anytime soon!!

Seriously? Are you FLIPPING kidding me???

I am so PISSED.

Ok....On the 19th, Keegan was riding his 2 wheel bike and another older child crashed into him. He fell and grabbed his arm. I placed ice on it and nothing became of it. He would whine about it every now and then but nothing MAJOR.

On the 21st... he was not feeling good, vomiting, temp of 101 &102, wasn't peeing and was in pain. I took him to the ER and told the ER doc about his arm as well. They xrayed his chest, but because he was using his arm, refused to xray it because he said it could not be broken.

His diagnosis - dehydration. NOT!!

I have seen dehydration, he was NOT dehydrated! I think it was his arm/pain that was screwing with his body.

So, here we are 1 1/2 weeks later and he is still complaining about his arm and now there is a lump where he says it hurts.
I took him to the Ped and she had him go in for an xray. YES, he BROKE his ULNA bone!!!

He is now in a beautiful blue cast, and will have it on for 2 weeks. At that point they will re- xray it. The fracture has already began to heal incorrectly. The orthopod is hoping the muscle will help bring his bone back into place. If not, they will need to reset it and start over!! HOLY CRAP! COULD THINGS POSSIBLY GET ANY WORSE AROUND HERE?

Carson is healing well, again. The derabond seems to be working well.

Yes, I am totally feeling like my life is a HUGE test right now. Maybe you have to be tough for SAINT hood? Who knows..... but I am sitting all my kids on the couch and we are going to stay there until school starts in Sept!!