Roller Coaster

It is always amazing to me how life can be so different from moment to moment.  I wrote a book for Brooke to help her understand the surgery process.  My amazing friend, Adriana, illustrated the story.  We read it to Brooke last night.  She immediately went from relaxed to tense.  Her brother, Aidan, immediately assured her that she would always be beautiful.  But this did not change her sadness.  She walked around for a long time just clutching the book.  Then she sat down by her dad, just holding the book and thinking.  Finally she said, "Mama, I am all better, I promise!" How do you look at your baby and calmly say, "Ah sweetie, it is going to be ok."  Only by the grace of God can you do this.  Otherwise the strength just would not be there.

So this morning, we headed back to the urologist.  To make a long appointment short, he basically gave us nothing.  He will not say she has a neurogenic bladder because he is just not sure.  Although he can't find any reason why she is not potty trained other than this.  So this means after surgery, she will need an MRI with sedation every 3 months to make sure her brain is not being pulled back down.  UGH!  We left the doctor a little down, but we only had 3 minutes to spare before we had to pay $2 in the parking deck and well I only had $1.  So I looked at the kids and said "We gotta run!"  Of course they both want to stop and look at the beautiful wall Miss Adriana painted, but no time for that today.  I threw the stroller in the car and buckled all the kiddos in.  We got to the gate 4 minutes after our hour mark! No marathons for us.  God bless the man, because he let me through.  Although I do not think he was very happy with me.

The rest of the day proved to me that our family is wrapped in love!  This surgery is to big for our family alone, so our family of friends have stepped up in so many ways.  One amazing couple, Dean and Melanie, bought Chiari Unite Bracelets for people at my work.  This moved me more than you can imagine!  Another couple have given us enough to purchase the special pillow and mattress pad for Brooke.  And we have extra to put towards a more comfortable stroller for her.  Others have offered prayers, food, help with medical costs and so much more.  I know they do it for Brooke because she is amazing, but what a blessing!  So if I have not said it lately...Thank you from the bottom of my heart!  My down on the roller coaster went soaring up!

Which we leads me to my next project.  I want to create a scrap book for Brooke.  It will contain pictures of people's scars along with a short little story (preferably one that is safe for a 4year old to hear).  I am going to take the picture and the story and create a book.  I need two pictures of the same scar.  One will just be the scar, and the 2nd will be turned into a work of art.  This way we can show Brooke how God can take our sadness and suffering and turn it into something beautiful! (thanks Miss Jaimie :)) I pray this little book will be a comfort to her before and after surgery.  So if you have a scar and can photograph it, please send me two pictures of it and a short story about how you got it.  Please be positive. :) Thanks!

Brooke's Story...

Today I learned about another little girl in our area who has Chiari.  She is a few years younger than Brooke.  There was a feature story about her in the local paper.  A very nice write up about how people are helping her.  It is always a good thing to see communities stepping up to the challenge of helping others.  I will add this little lady to my prayer list.  If her parents are like us, they want their girlie to be as pain free as possible!

One thing I am sad about is the little people know about his disease! Chiari is more prevalent than cervical cancer.  And yet we listen to those ads all over our TV's.  When I say Chiari, most people say, "What?".  The other problem is the medical community.  They do not even agree on proper treatment methods of Chiari.  

So what is Brooke's story?  For those of you who do not know, Brooke started having seizures right before she turned 2.  The first one was horrifying.  A Grand Mal Seizure right on our living room floor.  It was not fever induced, and the doctors kept asking questions I could not answer. "How long was it? Where were her hands, Her eyes?  Did she look to a certain side?"  I quickly learned to pay close attention to everything.  Brooke had numerous scans.  Finally her neurologist told us he did not know why she was having seizures but she had this thing called Chiari I Malformation.  "Don't Worry about it.  It will just give her bad headaches when she is a teen." he assured me.  Don't worry??? You just told me my daughter has a brain malformation. 

 Just a few weeks prior I had watched an episode of Extreme Makeover.  The mother and her 3 daughters had Chiari.  I now know this woman as the amazing Julie Carter, who I have had the pleasure of meeting.  

After this appointment, I went home and got on the Extreme Makeover web site.  I found Julie on there and emailed her.  I asked for direction.  She led me to my dear friend Nicole.  Nicole and her 3 children have Chiari and they are local.  Nicole guided me through site after site of information.  The best sites I have found are listed on my sites list.  

At this point I found the Chiari Institute, but it was in NY!  Surely there was a local doctor who understood Chiari?  So we made an appointment with a Neurosurgeon nearby.  This visit was probably not one of my proudest moments, but he was far from knowledgeable about Chiari.  I knew more than him and he did not even examine or speak to Brooke!  We left and made our appointment in NY.  Right after I had our appointment in NY the seizures stopped!  Brooke did not have a seizure disorder, she had Chiari.  God wanted us to know this.  The seizures led us to the tests that led us to the Chiari. Chills!  Thankfully He is Way Bigger than us!  

We went to see Dr. Bolognese for the first time in October, 2008.  Dr. B was amazing and his staff was awesome!  I felt like I had finally found the answers we needed.  Of course we still needed more tests, but he was certain that many of Brooke's symptoms were from a tethered spinal cord.  Brooke was supposed to have surgery on her spine in the summer of 2009.  Unfortunately, 2 weeks before we were supposed to leave, the hospital decided that there was not enough evidence of a tethered cord.  So my poor baby had to wait.  She has endured MRI's (which she is sedated for) and urodynamics tests every 6 months.  At this last visit in June, 2010 we heard what we were not expecting ...brain surgery.  See post Doctor's Orders.

As many of you know, I believe our children are gifts from God, on loan to us.  I put all my faith in this and ask God to lead me to the right doctors, knowledgeable people, and support systems.  He has never failed me.  In fact, time and again when I think that I just cant find the answers I need...SMACK.. they become completely apparent.  I do not know what this surgery holds for Brooke.  I pray a better, pain free existence. So I hand her over to the one who created her, and trust in Him.

Fighter

Brooke may be all about bows, purses and fancy dresses, but she has some fight in her little body!  I am always amazed at how tough she is.  We thankfully got through that yucky urodynamics test, but it took me and 2 nurses to hold her down.  Then of course, she now has a uti.  So now every morning and night I get to hold her down to shoot the antibiotic into her mouth.
I have to say I am glad she has fight in her little body.  She does come by it naturally.  As any of our family would attest, we have a long line of tough ladies.  I pray Brooke looks back at all she is going through and shrug it off.  I pray she looks at herself and remembers how tough God made her.  That she continues to fight through life for what is right and good.  Brooke is already a little lady I am so proud of.  I am excited to watch her grow into an amazing young woman!

To Get Worse???

Is it possible to wish your child was more sick than they are?  The answer..,yes!  We have been waiting for almost 2 years now on a silly urology test to come back worse then before.  If this urodynamics test tomorrow does not come back worse, we will not be able to have the dethering surgery on Brooke's spine in 4-5 months.  What does this mean?  After her decompression surgery, she will have to have MRI's every 2-3 months.  She will need to be monitored closely to make sure her brain is not being pulled back down by her spine.  Each time she has the MRI she will need to be sedated.  If the brain is pulled down again, she can have the spinal surgery, but she also might need another brain surgery.
So yes, I would like her urodynamics to come back worse.  Maybe she would not have to go through more testing.  But in order to get a good result on the test, Brooke must lay perfectly still.  Try explaining that to a 4 year old.  Let me just say this is not a pleasant test!
As a mom you want to figure out something that will keep her mind off of the test.  Movies, stories, dolls...nothing has worked in the past.  This time, we are doing our nails.  Yes our nails.  Why not have a nail painting party?  Why not do our make up?  All girls feel better when their fingers are painted, and lipstick pretty much cures anything!

The Proverbs Woman

"She is clothed with strength and dignity; she can laugh at the days to come.  She speaks with wisdoms, and faithful instruction is on her tongue." Proverbs 31: 25-26

I love this verse.  It speaks of a woman so many of us strive to become.  A woman we want our daughters to become.  A woman we look for in the friends we choose.  And when we find a woman like this, we rejoice.  My friend Carmen is a Proverbs Woman!

Carmen has a new business selling 31 bags.  She decided to host parties for Brooke's medical bills!  I hosted one a few weeks ago.  Now several other people are also hosting parties!  The bags are great quality and super cute!  If you would like to learn more about "Bags for Brooke", check out our Ways to Help page.

I am so thankful for amazing friends.  Life can be a hard road, yet at every turn you meet someone who shares the burden with you!  I only hope I can return the favor on this journey.

Cozy Pajamas

Tonight was bath night in our house.  Brooke loves baths!  She says it makes her body feel better.  She always grabs different toys to take in with her, ponies, barbies, polly's.  I never know which.  One thing I do know is to grab the cozy pajamas.  When Brooke gets out of that tubby, she wants to snuggle up in her warmest set!  How wonderful it is to hold your children fresh from the tub.  They smell clean, and it feels perfect to wrap them up in your arms.  You feel like you can protect them from anything...but you can't.

Surgery date is scheduled for August 10.  I want to be that crazy mom who pushes the doctors and nurses aside in the OR, "Move over, Mama's coming in to hold her baby.  You need to find a way to work around me."  How do you stand at the door and let your child go into unknown future?  Ho do you wipe away the tears from their face, and not let your own fall?  I am constantly amazed at the strength God grants us just when we need it. Although I can't hold her forever, I can wrap her up in cozy pajamas!

Doctor's Orders

I want to thank all of you who have been praying for Brooke.  As many of you may know we went to NY last week to see her Neurosurgeon and have more tests.  We found out from her new MRI that her brain malformation has become worse.  Her Cerebellum has now begun to wrap around her brain stem.  This is not good, since the brain stem controls breathing, swallowing, heart rate.  Plus the ligament that runs in the front of the brain stem has enlarged quite a bit.  This has caused her head to become wobbly and unstable.  The cerebellum in the back and the ligament in the front are blocking cerebral spinal fluid to her brain.  All of these things lead to the pain and many other symptoms she is having.  The doctor recommends brain surgery to correct all this.  Unfortunately, because she has the wobbly head, he can’t do a normal surgery or she would not be able to support her own head and have to wear a collar.  They normally fuse the head to the spine, but she is too young for this.  So he is going to do a newer surgery.  It will require a larger incision, but he feels that this will be better in the long run.  She may still have to wear a collar or have the fusion done later on.  He would like the surgery done this summer.

            As complicated as all this is, he then wants to perform the spinal surgery 2 to 3 months later so the spine does not pull the brain back down.  The problem with this surgery is you can’t see the tether on the cord.  So there are 6 criteria, she has to meet five to have surgery.  She has 4.  One of the ones she does not meet is Spina Bifida.  Which we found out she did have, but miraculously fixed itself! The other is a neorogenic bladder.  Everyone feels she has this one, but the urologist will not say she has it until more tests are done.  So we will do those tests in a few weeks.  If she does have the neorgenic bladder, she can have the spinal surgery.  If not, she will have to have MRI’s every 3 months after the surgery to make sure her brain is not being pulled back down. 

            We know this surgery can be scary, and overwhelming, but we want our little Brooke to be as pain free as possible.  Our prayer is this will help.  Our family feels so blessed that God led us to the right doctors so early on.  So many of Chiarians suffer for years with no pain relief. 

Thanks again to all of you for you support and prayers.