Ladybug Secrets

Ladybug Secrets:
Don't let the small stuff bug you. And Spot new opportunities.

Tuesday, December 21, 2010

A Year of Blessings

No Christmas cards this year, but that does not mean we are short on the Christmas spirit!  What an amazing year we have had in the Crown house!  It has been a year full of many blessings.  I know I have shared many things on this blog, but many I have not.  The Crown family year in review....


We started off 2010 with me being very pregnant.  We were all excited for our new bundle!  Chandler Joseph Crown was born Sunday, February 21, 2010.  He was beautiful, and the new light in our lives!  When God gave him to us, He knew the year ahead.  Chandler has dealt with every trip, illness, and life change wonderfully! 




As many of you know, my grandma and my mom's family lives in Colorado.  Unfortunately this is not only a long trip but a pricey one.  The kids just love going to see great-grandma.  We really did not see how this would be a reality this year.  But with the help of my parents and some other good things happening, we were able to go to Colorado in June.  We road Amtrack!  What a journey...My mom, dad, brother, sis, me and all 3 kiddos.  Parts of it were amazingly stressful, but completely worth it!  If you have extended family close by, treasure it!  Aidan asked me as we got on the train why I was crying.  I told him, "Because mommy never knows when or if we will be coming back."  What a gift to be able to spend a week out there!



As soon as we came back we unpacked and packed again for Brooke's doc appointment in NY.  We went to this appointment thinking she may need surgery on her spine in the next year.  So as I sat in that chair and listened to Dr. B, I was totally unprepared.  He explained about her Chiari getting worse.  So I just leaned forward and said, "What are we saying here?"  Brain Surgery was the answer.  The next few weeks were spent preparing for Brooke to have surgery on August 10 in NY. 


On August 10, Tim, myself, my mom, Aidan, and Chandler waited for 8 long hours while Brooke was in surgery.  She came out of it with flying colors.  What a strong lady she is!!!  The next few days were not easy for anyone.  Many tears, and cries of pain.  Brooke refused medicene so this made things worse for awhile.  Thank God for her brothers!  Brooke looked forward to their visits in the playroom.  It forced her to get out of bed and move.  She smiled, played, and started healing.  What a blessing that we could be together as a family. 

We were in NY for 2 weeks before heading home.  Nothing about Chiari is easy.  Every day is different.  As I write this, Brooke is having a bad day.  She is just laying on the couch, to tired to move.  What makes it a blessing?  She is here, she is relatively healthy, and she has some amazing days!  We still have a long road of tests, doctors appointments and possible surgeries.  But we have been so blessed on this road.

 Brooke has had the chance to make a friend here in Canton that has Chiari.  Her and Danica are little heroes to their families.  We are so blessed to have been brought together.  The 2 girls now have someone close who understand, and us mommies have a friend to lean on.

This year has also brought many illnesses for Tim's grandparents.  They are both doing better now!  This is a miracle and we are so thankful for the time we have with them.  We are also thankful for the chance to have Tim's Aunt Amy, who I am now guardian for, spend Christmas with us!

Another Blessing this year was that through this tough economy, Tim and I have manage to stay employed! :)  Thank goodness for work.  And I feel extra blessed because of all the little rays of sunshine I work with every Sunday! 

With all this craziness we added a little more!  This was Aidan's 1st year in 4-H!  He did great.  Aidan and Brooke were also in the Little Theatre Troope this year.  Aidan was a mouse in the Spring Production of Cinderella.  Brooke and Aidan were Cats in the Fall Production of a Purrfect Christmas.  We have also continued home schooling.  Aidan is in first and Brooke is working on Kindergarten.  We are having so much fun!!!



There are so many things I could tell you but here are just a few of the numerous blessings that we thank God for this Christmas:  All of the people who helped us get to NY and stay there as a family, the Ronald McDonald House for their amazing service to people, All the docs and nurses who cared for Brooke at Long Island Jewish Hospital, Dr Bolognese- unending gratitude for his gentle and loving care of our daughter, the wonderful man who repaired our van while we were away (it was on its last leg!), our church family who prayed without ceasing, the families who made the Chickfila benefit happen, the family who helped me set up this blog and then supports us through Bags for Brooke, all the people who have had home parties to help with medical bills, friends who have cared for Aidan, all the people who made meals for us, family that have stepped up many times to help, the amazing people who made Christmas a reality for our children this year.


I am sure I forgot someone...we love you all and thank you for a year of blessings!!!
Merry Christmas from our 30 little piggies to you!!!

The Crown's: Tim, Melinda, Aidan, Brooke, Chandler, and Ranger, too!

Monday, December 13, 2010

Some Time to Adjust

Wow it has been so long since I posted.  I wish I could say our lives are back to normal, but that is not true.  I think this weather is extra hard on Brooke.  Today was not good.  She woke up sore and spent most of her day just not up to doing much.  I always feel so sad when i have to drag her out of the house when she feels bad.  I am thankful she can go to my mom's while I work.  At least it is close to home.

We are trying new things at our house in hopes that Brooke might get some relief.  Our family has started to eat differently.  I have been reading that some people with Chiari benefit from a gluten free diet.  So, as much as we can, we are cutting back on gluten.  Tomorrow she is going for both an Occupational and Physical Therapy evaluation.  We have learned new ways to try and defuse the fits she is having.  She still has them but not as bad.  I have figured out a few triggers.  Noises is a big one, and so is touch.  For example, the humming from lights, and the chatter of people talking really bother her.  Plus if she is not feeling well, even touching her hand makes her scream.  So if I see her getting upset, I use a soft voice and then warn her that I am going to touch her hand. Another thing I have found is she needs to understand what could possibly happen in each place we go.  If we are taking a trip to Walmart, I need to remind her it might be loud, there will be a lot of people, it might smell, she might get tired walking, the cart might be bouncy, the cart might hurt her bottom, it might seem like we are there a really long time, it may be hot, it may be cold, etc, etc.  Yes I go through list like this everywhere we go.  I have started to write things down to help me remember.  Plus as I notice triggers, I write them down.  This has helped quite a bit.

We are not sure when our next trip to NY is.  Her neurosurgeon wants us to pursue a urologist who will help us.  I am not sure how to even find one.  It is not like you can call them up and say, "Do you feel my daughter has a neurogenic bladder?  If you do, could you please write this in her chart without putting her through more tests?  Oh and could you do this before her brain is pulled back out of her skull cavity? Thanks!"  We know that even with the surgery for Tethered Spinal Cord, Brooke may still be unable to potty train.  We also know that she may still have issues with balance and pain.  But if it might help...we just want to help her as much as we can.  She is already becoming wobbly again.  She has fallen down the stairs twice now.  She almost fell down our basement stairs, but I grabbed her collar and caught her.  This terrifies me because our basement stairs our wooden with a concrete floor at bottom.  Plus this is how we enter and exit our house.  I have told Brooke and Aidan that Brooke is not allowed to go down the stairs first.

I know this post is a rambling mess, and I thank you for reading past all of it.  I am typing while holding a sleeping baby! :)  My legs have now completely fallen asleep.  I love looking down at a dreaming little face!  I will post again soon.  Just wanted to get an update out, since many have asked how things are going.  Thanks for all the prayers!
Merry Christmas!!!!

Wednesday, October 27, 2010

The Labyrinth

I was thinking about my life the other day.  And this movie came to mind.  It was one of my favorites.  If you are not a David Bowie fan and a fan of the muppets, steer clear of this movie. :0)  But many times in my life I have been like the girl in the movie.  Searching.  I think we all find ourselves in this spot.  She goes on this great quest to save her brother, only to realize she is the one who needs saving.  She is so wrapped up in her own little world, she forgets about the world around her.  My favorite part is when she is dressed up in this lovely ball gown.  She is at a masquerade, searching for happiness.  She is starting to realize that this world she has created is not that much better than the one she lives in.  In the end, she rescues her brother and returns to reality, realizing it is ok to rely on others, and just enjoy life. 

Oh how I am like this girl!  I have always been guilty of just picking up the pieces and moving on without taking time to really examine the situation and make sure I am ok.  I am great at putting on the "fancy ball gown" and turning my back on the little things.  But all of us will find that if we go one like this, the labyrinth of life will just crash down around us.  There has to be a point where we reach out. 

Many of you have seen Brooke since the surgery.  She is still our spunky little gal!  For the most part she is doing great.  But we have been dealing with some interesting new character traits.  Many of you have encouraged me and said that it is an age thing.  And some of it I agree.  But I have been around enough children to know that some of it is not.  Whether it is behavior or pain, I am searching to find a way to help her.  Some days she seems fine, others she is mildly disobedient.  And yet others, Oh it takes all my strength to get through those days.  Just the other night she had a "meltdown" at the library.  This was only one week after her other "meltdown" at the library.  After it happened, I reached out to a friend with Chiari, asking for help.  The sad thing is, there is so little that can be done to help.  Beyond pain management, there is just not much else. 

Our course of action through our Labyrinth: asking others to be patient with us and understand.  I do not know what the future looks like.  I do know I have to make our lives as simple as possible, so Brooke can have a safe haven to rest and recuperate in.  She needs discipline yes, but she also needs ways to escape when she hurts.  We know movies help her relax.  Baths also help to relieve symptoms.  If you see us somewhere though, and Brooke is screaming, hitting, and running from me through parking lots, pray.  She is a strong little girl and getting stronger each day.  We love her so much and want her to be healthy, happy and safe.  When she gets like this she is none of these.  Someone said today: The greatest place love was shown was the cross, the greatest pain that was endured was the cross; Love is both beautiful and painful.  (thanks Mr. Mike!)  I believe this.  So no more twirling around in my ball gown, I will be in muck boots from now on!

Tuesday, October 12, 2010

The Dance

The past 2 days have been wonderful for Brooke.  She has been happy and appartently pain free.  Yesterday while leaving the grocery, she twirled and danced to the van.  Looking at me with a great big smile, I knew her day was going good.  Then today, Brooke was again dancing while standing in line at jonanne's.  A few ladies looked on and smiled.  When anyone comments on her haircut, she just says, "That's because I had brain surdery."  They are really just saying her hair is cute! :) I am so glad for moments like this.  Moments that I have to call her down for being to wild.  Because I know that it will quickly pass. 

Two Days of good followed by..... well not so good.  Tonight at play practice (which I was worried was too much for her, but big bro was doing it, so she just had to) while singing a song, she fell apart.  She was standing with all the other kids, they had to take a jump back and she jumped wrong and jarred her head.  I watched as that little lower lip started to quiver.  Then came the confused look as she tried to find me.  I motioned for her to come, but she stood there and just cried quietly.  Thankfully my mom was able to get her and bring her to me.  Poor little lady cried the whole way home.  She was broken hearted because she thought she would miss being in the play now.  I told her she could still do it.  When carrying her in she pleaded for me to stop bouncing her.  I assured her I was walking as gently as possible.  My heart aches at moments like this. 

If you know me, you know I love music, but have no musical ability.  In fact, I lack all rhythm and can't hear the beat in music.  I have tried numerous times to play an instrument, and have been told I would never learn to play.  This frustrated me so much!  And yet, I was always able to dance.  For some reason when it came to ballet, I could remember where each step went based on the music.  I could never count music, but I managed.  Some dances took more practice and were harder to learn.  But I loved to dance!  There really was no greater joy in my life!  Dancing can transform you, let you escape, and focus only on a moment. 

For us, that is what life is...a dance.  Although we can't count every beat, we can slowly try to figure out how to deal with each day.  We can focus just on the moment, bad and good.  And if we do it just right, our lives will reflect something beautiful, even if at times it is a struggle.  This is my hope, to help Brooke dance through her life.  To be unaware of the chaos and pain around her for even just a moment. 

Wednesday, October 6, 2010

Hero of the Month

Yesterday a package arrived by mail.  A fun package.  I always loved the fun packages as a kid.  When Brooke opened it up, we discovered that she was North Shore Hospital's Hero of the Month for September!  This is a program sponsored by Children's Wish Network.  She was sent a t-shirt, certificate, medal, and gift card.  But more important than all that was the letter.  The encouraging words.  Our little lady was inspiring others!  I was so proud, and even more blessed.

As a family, we have been showered with fun little packages.  Some are just little notes of encouragement here and there.  Some have been financial help and wonderful meals.  All are appreciated.  One thing I have discovered though is I am not as quick to get my thank you notes out.  Please know my heart, I think of everyone who helps with kindness and love.  I pray for each of you.  And some day you will get a card of thanks!  You are our families heroes!

I want to thank so many of you for coming to the Chickfila Benefit.  What a great turnout!  Brooke loved seeing so many of you!  She actually did very well for the first part.  She wore out towards the end, and seeing the cow sent her over the edge.  Thank goodness Dad arrived to save her and take her home.  Brooke loves her daddy and he jumps in to be her hero all the time!

We really loved seeing you all.  What you all did will help in so many ways.  I have to practice deep breathing as I open each medical bill that comes in.  I know that it will be ok, and trust that God is showing our family that money is not a cure for anything.  I was quickly brought to this realization just the other day.  Some amazing people I know went on a mission trip to Haiti.  One of my friends was sharing stories with me about hospital care in Haiti.  I cringed thinking about any child not having the proper care they needed.  To not even have food provided, everything needing to be brought in by the family.  I thought of all the things we take for granted and how fortunate our children are.  To all those who are missionaries, I pray blessings on you!  You all deserve the Hero of the Month Award!

Another little lady that deserves this award is Brooke's new little friend, Danica.  She also has Chiari.  She went for her second surgery yesterday.  This brave little hero is now trying to fight a very tough battle.  Brooke sat at the kitchen table praying for her yesterday.  She prayed a prayer only a person who understands what Chiari is all about could pray.  I listened as she asked God to protect her friend.  These 2 little ladies can be heroes to one another!

We are surrounded by heroes everyday.  Most of the time, we never tell them thank you or even acknowledge their efforts.    But I encourage you to find just one hero tomorrow and thank them.  What would we do without the Heroes of the Month!

Sunday, September 26, 2010

Unsung Heroes

This blog is dedicated to my little lady Brooke, but I have 2 other amazing kids!  I decided to write about them tonight!  Aidan and Chandler are my 2 little heroes!  God knew exactly which boys this family needed.  Each day I am amazed at both of them.

Chandler.  His name means candle maker.  That might seem like a simple meaning, but it is not.  A candle maker brings light to a dark room.  And that is my Chan!  He can light up any room he is in.  Tim and I tell each other all the time what a happy baby he is!  And he does not mind that in his first 7 months of life he has been carted to numerous doctors appointments, tests, and all over the US.  Chandler was not a bit upset in NY.  He was fine to come up to the hospital to be fed and then go back with Grandma.  Each day I watch him grow and play, and feel so blessed he is my son!

Aidan.  Well if you have ever met this boy, words are hard to find!  Sometimes I think he is a 90 year old in a 6 year old body.  He is my sensitive one, and thank goodness for that!  He is there for his sissy whenever she needs him, and his mom too!  The other day Brooke was having a major meltdown.  I had her, the stroller, and Chandler in the stroller.  I knew I had to carry her, but how?  I did not say anything, trying to work it all out in my head.  Aidan looks up and says, "Don't worry mom, I got the stroller and Chandler.  You get Brooke."  Ok so I have tears just writing this.  Even in a moment where I feel stressed, my 6 year old saves the day!  Aidan has saved many days!  He also offers comic relief.  He really is hilarious.  Not sure if you are just super funny at 6, or what, but he keeps us all laughing.

I know all this is hard on my boys.  It is hard on Tim and me, so I can only imagine.  But they are strong little men, and I am so proud of them.  Each of them bringing their own special gifts to our fam.

Tuesday, September 21, 2010

Inspired

I can't say how many times I have been inspired by a person with Chiari!  One example is my amazing friend Nicole.  She suffers each day with Chiari and has 3 children who also have it.  She is always trying to better their health and make life a little easier.  While doing all this she counsels people like me who call her with endless questions.  Another is Julie Carter who helped and counseled people out of an old chicken coop.  You may have seen her story on Extreme Makeover.  She too has 3 children with Chiari.  Both these ladies continue to be an inspiration to me.

Just a few short days ago people gathered all over the US for a walk to help teach others about Chiari and raise money for research.  I wanted so bad to go to the walk in Toledo, but with Brooke it was to much this year.  Shortly before the walk 2 women with Chiari earned their angel wings.  I did not know either ladies, but my heart breaks for their families.  I pray that both families are comforted by God's love during this time.  I have put a link below for one of the ladies.  This just shows that more research needs to be done!  So many people still think there is a quick fix.  For some there is, but for many this is a lifelong battle.

Amy's Story 

I am reminded that our stay here is short and undetermined.  It is so important to enjoy each moment and hold loosely to things of this earth.  I was struggling for the past 2 days over my nursery bedding set.  Part of me wanted to let it go the other wanted to cling tightly to it because it reminded me of the joy I felt when I found out I was going to be a mom.  I wanted to pass that joy on to someone, but I was also wanting to be selfish.  I finally posted on facebook that I was getting rid of it.  I was still a little sad, then I heard about these women.  Ugh talk about a slap in the face!  Silly bedding!  I mean really it is the memory not a piece of quilt.  Make the most of your day, and kiss those babies! (Even if they are 25!)

Monday, September 20, 2010

Makeovers, Friends and Answered Prayers

The MRI's came back fine.  So this is good news, right?  Our pediatrician probably wondered by my response today what was wrong with me.  She told me the MRI's looked good, and the they showed no evidence of a Tethered Spinal Cord.  I said, "Oh no!"  OK terrible mom!  But I am just so uncertain as to what is causing all this pain in Brooke's legs, and why she can't potty train, and many other things???  You never want anything to be wrong with your child, the problem is something is wrong.  I just feel like we are not getting all the answers we need to help Brooke.  So now I will wait to hear from the neurosurgeon on the next steps.  In the mean time, we just have to help Brooke cope.

Yesterday Brooke asked me if I wanted a makeover.  I told her sure!  So she gave me a full makeover with pretend hair wash, trim, blow dry, and style.  She even did my makeup.  While she performed the makeover (which I desperately need!), we chatted about life.  It was funny, just like a real salon.  Polite small talk.  Brooke asked me if I had daughter with Chiari.  I told her yes.  She told me she had a daughter with Chiari too.  She said sometimes it was hard for her daughter.  Her daughter was tired a lot.  I told her so was my daughter.  She said, "well maybe sometime they could meet?"  As I sat there I realized what a grown little 4 year old I have.  Brooke is dealing with life situations that most adults can't handle.  I get tired everyday from just normal life stuff, so why would she not be exhausted from normal life stuff!

This conversation also made me realize that she needed a person to connect to with Chiari.  Yesterday we went to a birthday party for another little girl with Chiari.  She is turning 3 and about to face another brain surgery.  She is cute, dainty and as strong as Brooke.  When I look at her, I see Brooke and my heart aches.  I on one hand am so thankful that my daughter has a friend she can share this journey with.  But on the other hand, I am sad for her family that they too have to endure this horrible disease!  Yet they also trust that God will pull our little ladies through this.  That He will make us all stronger and our faith more resilient.

Prayers are answered in so many different ways.  I still may not know what is causing all the problems for Brooke, or even how to fix them.  But day by day we are adjusting to this new normal.  Our makeovers are not in a posh salon, but in our own cozy bedrooms.  Our new friends may also have to endure pain and heart ache, but we will all hold each other up along the way.  So here we go...we are gonna keep on trekking!

Thursday, September 16, 2010

Another MRI

So we spent the day at Children's Hospital.  Brooke had to have another MRI.  We have never done an MRI at Children's and wow what an experience.  I know people really love this hospital, and I know they do some great work there, but...man what a day!  Probably one of the worst MRI experiences we have had.

As soon as they took us back to the room Brooke wrapped her legs around the stroller sides.  She started screaming.  It took me and a nurse to pry her from the stroller.  This was at 11:35.  At 11:45 they realized they were going to need to give her some versade (sp.?) to settle her down.  So that then took me and 2 nurses to hold her down while another put the meds in her mouth.  Which she quickly spit out.  She did manage to keep some down.  Then they had us go sit in a waiting room until 1:15.  By this time the meds had started to wear off. So she fought while getting back into bed.  The nurses (who I must say were very nice)  told me to read her a story while they drew blood and put in the IV.  I told them to just take the book, because they would need me to hold her down.  I do not think they believed me.  So they told her they were going to wrap her up like a burrito.  She wiggled loose of that in a matter of moments.  So myself and another nurse held her down, while 2 other nurses put in the IV.  They then commented on how strong she was.

After this they had go back to the MRI room.  Before she was even asleep, they tried to put on the blood pressure cuff, heart monitors and pulse ox.  Again more kicking and screaming.  Finally they put the poor girl to sleep!  Can I just say every other time she has an MRI I hold her down while they quickly put a mask on her.  She is asleep in a few moments and then they attach everything and run the IV line.  So much less traumatic!

Two hours later the procedure was done.  Now we just have to wait.  I do have to say I am even more thankful for Dr. B and all his staff!  Had this been my experience in NY I might have run away screaming.  It is never easy to see your child upset but when it is drawn out over several hours..it becomes almost unbearable!  But she is home and playing Polly's while watching Christmas movies.

Wednesday, September 8, 2010

Beyond Belief

Ok so this title really has nothing to do with anything, but Aidan is listening to this song in the other room and I am not creative tonight.  We have felt so blessed for all the wonderful meals, and help people have poured out on us.  It really has been a huge help.  After my last post, I think people were worried I was a little down and out.  But I am happy to report my self pity party is over.  Nothing a Dr Pepper and brownie could not fix.

Moving forward though, Brooke's neurosurgeon agreed the behavior is not normal.  So now we have to go get an MRI and Blood work.  She also is now complaining about pain around the incision.  We can no longer put things over the head, unless it can go up her legs.  Plus her leg aches are much worse now.  And just tonight Tim and I were discussing that we have noticed some regression in her behavior.

We have a follow up in NY 3 months after the procedure.  I can't believe on Tuesday a whole month will have gone by.  I am hoping to know more after these next few tests.  It really is Beyond Belief how far we have come!  Well ya knew I had to throw it in there somewhere!  Gotta be a little Cheesy!

The Chikfila Benefit will be September 30- from 5-8 at Dressler Road location.  Hope you can come!

Also September is Chiari Awareness Month!  Help me spread the word about this disease.  We desperately need more research and more health care professionals to understand it!

Thanks for continued Prayers!

Thursday, September 2, 2010

Each Day is New

I have not posted in a while because I have been down, blue, depressed, whatever you want to call it.  For some reason I just could not think of a good way to write how I was feeling.  I am still not sure I can.  But I am going to attempt it.  Brooke is doing good physically.  Her head looks great, and some days she runs around like nothing ever happened.  Today was one of those days.  But not every day is this way.  And this is why I have been down.

Ok I am still just sitting staring at the keyboard.  No words.  Basically it is her behavior.  She throws these awful fits.  In fact, a couple have been so bad they leave me in tears.  She hits, kicks and screams with all the power she can come up with.  The fits really have nothing to do with anything.  She is not angry about anything.  And after she throws the fit she returns to normal activity.  When I try to talk to her about it, she says, "Mommy I was not screamin."  What!?  Brooke also just says these random off the wall things.  They really make no sense and she says them at odd times.

So most of you are probably thinking, "Well duh Melinda, she did just have brain surgery."  And I know this.  That is probably why I have not written any of this down.  It is very hard to explain.  But if you go through one of the fits with her, it would be clearer.  I really feel like my daughter is completely not in my control.

All of this has really clarified for me that Chiari is a life long battle.  There is no quick fix for most.  We need more research, more doctors to learn about it.  I as a mom need to educate myself more.  I need to find ways to help my lady cope with her pain and help her learn healthy ways to express she hurts.  I need to just be there for her on the bad days.  And just as important on the good days.  My one friend who has Chiari always tells me each day is different, each day is new.

So if you see us out, and Brooke refuses to talk.  Or she shrugs your hello off, please do not take it personal.  It is probably not a good day.  If she jumps up and down and talks your ear off, her day is shining bright!  As for me, I am gonna pull myself up by the boot straps and move forward.  No time for wallowing here!  Got some cute kids and a hubby to take care of!

Wednesday, August 25, 2010

In My Arms

I was listening to the song by Plumb, In My Arms, on the radio today.  If you have heard the song, she is singing, I assume, about her child.  How she will hold her child and keep it safe even through the worst storms of life.  I have always thought this was a pretty song, but today I realized how untrue it is.  As much as we want to, we can't wrap our children up and keep them safe from all of life's storms.  I saw this very clearly over the past 2 weeks.

Even though I know that I can never protect my children completely from harm, I have peace knowing that God has them in His arms.  I may not always choose the path he has chosen for them, but trust that he will get us through it.  This is not easy.  We tend to think we know what is best.

Watching and listening to Brooke, I am reminded how strong he makes us.  The other morning I asked her if she wanted to put on a hat.  She said, "Why mommy, do you want me to wear it?"  Part of me wanted to tell her yes because people might stare at her head and make her sad.  But I said, "No, only if you want to."  It does not bother her if people look.  One lady told Brooke, "Oh I just feel so sorry for you."  Brooke looked at her so strangely, as if to say, "Why?"

Brooke overheard e telling someone about her future surgery.  She asked me later if she needed another surgery.  I told her yes.  I thought she might run away screaming.  Instead, she looked at me and said, "ok."  What???  You are ok with this?  I am so thankful for the strength God has given her!

Tuesday, August 24, 2010

Home!!!

We got home around 12:30!  Thanks to my awesome friends who brought dinner, brought milk and eggs, and many other staples!  Spent time with kids and did some cleaning!!!  So glad to be here!

That's all for tonight!

Monday, August 23, 2010

On Our Way

Gonna keep this short and sweet.  I am super tired.  But we made it 1/2 way across PA.  The kids were very tired so we stopped for night.  Will be home tomorrow.  Brooke had all her staples and stitches taken out this morning.  She still has drainage, but doc said it was ok.  She sat pefectly still why he removed all the stitches and staples!  She did not even say ow.  So Brave!!! 

So many cool stories I want to share...but they will have to wait.  Just to tired!  Good Night all!

Sunday, August 22, 2010

Home Sweet Home

Ok so I keep telling everyone that we are leaving NY tomorrow.  Truth be told the doc has not told us this is ok yet.  But I really feel that it is time to go home.  So I am gonna put my faith in this.  Brooke is doing really well.  In fact, in the morning you would think she never even had surgery.  By late afternoon and evening, she is wiped out.  She looks good, although she has lost some weight.  Her head still has fluid, but I am confident they can drain this and remove staples.  Her UTI is getting better.  With all this good, home has to be at the end of the road. 

I am so thankful for the quick recovery that she has had.  I am so thankful for all the prayers that have carried us through this first journey we are on with her.  When I think that this is just a bump in our road, I grow slightly weary.  But I know that we are on the right road. 

In case you do not know about some of things people are doing for Brooke, please check out the ways to help page.  We have some awesome people planning events for Brooke.  We have been blessed to have help with so much.  But the medical costs and the cost of living away from home are overwhelming.  I hate talking about money.  I hate even more asking for prayer about money.  I am so fortunate to have a roof of any kind over my head, and a family that loves each other under it.  That should be enough.  Unfortunately, the bills have to be paid, and baked goods do not work as payment.  I have tried. :) 

I pray my next post is in OHIO!!!!!

Saturday, August 21, 2010

Passing the Time

My mom and I were driving to the grocery today, and she said "Oh good it is already 3PM."  I laughed because we are actually wanting the days to pass quickly, as opposed to at home when we want more hours in the day.  But time really does pass quickly no matter where you are.  I am trying hard to enjoy every moment here.  Watching Brooke and Chandler form a special little bond.  Her calling "Mr Chandler" and him just laughing at her.  Seeing Chandler learn to sit up and watch what is going on around him.  Brooke putting together a 50 piece princess puzzle with very little help.  Doing a million loads of laundry because chndler peed on me, then the next outfit he pooped on me, then he pooped all over himself, and my mom and I just laughing at it all.

So even though the time is passing slower than normal and we are missing the ones we love in Ohio, trying to find Joy in each moment. 

Brooke is doing good.  She is on 2 antiobiotics now.  The swelling in her head is still there.  Afternoons and evening are the hardest because she is tired and cranky.  Just to clarify she is out of the hospital.  We are all staying at the Ronald McDonald House of Long Island.  Hoping Monday is the day for staples to come out.  If not I may kidnap doctor and medical staff and bring that back to Ohio with us.  Just Kidding.  But I am saying we will be leaving, even if I have to turn around in 2 days and come back.  Really want to see Tim and Aidan. 

Thanks again for prayers and amazing friendships.

Friday, August 20, 2010

Update

Must be tired, could not think of a fun title.  We went back to doctor this morning because there was more fluid around incision.  It may have to be drained again on Monday, but he wants her on the antiobiotic for awhile.  But tonight she started running a temp of 101.  So I had to call him.  Plus Brooke now has some UTI symptoms.  I am waiting for his call back. 

I thank you all for continued prayers.  I have yet another pray request.  Found out today my husbands grandma is in the hospital back in Ohio.  Her kidneys shut down once and may do so again.  She is very ill.  The kids are very close to her, and I am guardian for her daughter.  I can't be there for Granny or to explain to Amy, her daughter.  I am just praying that she will be ok.  I know I ask for many prayers, but I know I have some awesome people out there with an inline. :)  Thanks to all!!!

Short Post!  Gonna wait for the docs call!

Thursday, August 19, 2010

Tears

I have to admit I am writing this with tears in my eyes.  We can't come home yet.  :(  My heart aches.  Ok here is my little pity party for myself...I am tired, I miss my husband and my Aidan.  Yes dare I say it...I miss Ohio.  Ok I am done feeling sorry for myself.

We were able to see Dr.B this afternoon.  He amazingly got Brooke to sit perfectly still while inserting a large needle into her head and pulling out the pocket of blood.  She did not even cry and was on no pain meds.  I am telling you, she loves this doctor!   But as he was wrapping her head, I said, "You are not taking out the staples."  And he said, "Oh no not today."  Ugh!  He wants them to stay in until Monday.  He put Brooke on an antibiotic to ward off infection.  So with that news, we must stay in NY.  I am thankful that he is such a good doctor and can be honest with me.  And I feel blessed that we can stay at the RM House, and that I have my mom here to support me. 

Please if you can, a few prayer requests.  1. For Aidan.  He is homesick and he broke down on the phone talking to me tonight.  It just breaks my heart and I want to hold him!  I know he is in wonderful and capable hands, just missing him!  2.  For Tim.  He is missing us and us him!  3. My work.  I am feeling like I am not being efficent enough.  And I am not there to do what I need to do.  Just hate letting people down.  4. For my mom, dad, sis, and bro.  My mom has been gone as long as me.  I know they are missing her a home too.  4. And of Course Brooke!  That she keeps healing and that Monday will be a good day all around!  Of course still praying for His will not ours.

Love to all!

Wednesday, August 18, 2010

Stitches and Staples

I am constantly reminded that nothing goes as planned and nothing is as it seems.  This is not always a bad thing.  It tests our faith and courage, and keeps us on our toes.  I always say life is an adventure.  And all adventures have good moments and not so good moments.  What does all this mean to us...well let me share.

Today we headed back to TCI (The Chiari Institute) to have Brooke's staples and stitches removed.  The nurse takes us back and tells Brooke she can have a surprise if she lets her pull off the tape and bandage securely sealed to Brooke's head and hair.  Brooke knows this means a big ouchie and immediately starts screaming.  This sends poor Chandler into a panic, because he now cries everytime his sissy cries.  (and it is a deep sobbing cry, not his normal one. :( )  So my mom quickly takes him out of the room.  The nurse, seeing that we will need help calls two more nurses into the room.  They try to entice Brooke with bubbles.  I knew they meant well but I told them, "I think we need to just hold her down."  So myself and 2 other nurses hold her down, while the other one pulls off the bandage. 

Now the staples.  The lay out the tools and the one nurse swabs with iodine, while we are still holding Brooke down, who is still kicking and screaming from fear.  My nurturing mom steps in and thinks, "Pick up your daughter, cuddle her, kiss her, tell her it is all going to be ok."  But then my Reality Check mom jumps in and says, "Kisses later, help the nurses hold her down, don't cry, and don't faint! There is just no time for any of this!"  So out comes the 1st staple.  Can I just say, it is clear to me more than ever that God did not call me to be a nurse.  After the staple came out I knew something was wrong, because the nurse just stopped.  They told me I could hold Brooke because there was a fluid leak.

So there we sat waiting for the neurologist to come in and look at the incision.  When he came in, he informed us that there was swelling around the Bovine Patch.  He did not feel it was a CSF Leak (Cerebrial Spinal Fluid).  But he did feel that Dr. B needed to look at it.  He also did not want anymore staples to come out.  Dr. B was in surgery, so they would call us later with more details.  They wrapped her head tightly with an ace bandage. 

I decided I needed a cold Dr.Pepper with Ice.  We went on a search for one, but New Yorkers appartently do not like DP???  Even Taco Bell did not have it!  And if you know me, this was a great disappointment and discouragement.  And for lack of a better plan...we went shopping.  Malls in NY are just plain insane but fun! 

We found out this evening that we will see Dr. B tomorrow around 4PM.  He will see us at the hospital.  He will probably need to drain the fluid.  This is done by inserting a needle into the pouch of fluid and draining.  My poor baby is going to be so traumitized.  Then if he feels the incision is healed enough, he will remove the staples.  If not, he will rewrap and we will have to wait a few more days.  We talked about going home and having the staples come out there, but what if something happens there?  I would rather be close to TCI just in case. 

I have to admit I was having a real hard time finding the silver lining.  But God always comes through.  Tonight we met a family who's 9 year old daughter has Chiari.  She has not had surgery yet.  She also has the instability in her head.  So there it is...a great reason for being here tomorrow.  A chance to learn more about this family, and allow Brooke to make friendships with other Chiarians. 

Love and Hugs from us all!

Tuesday, August 17, 2010

Waiting...

Just hangin out here in NY.  Trying to keep a 5 month old and a 4 year old busy.  Brooke is doing pretty good.  She went all day with no pain meds, not even tylenol.  She played barbies, dress up, and made brownies.  But then, she was tired so we came to the room to watch a movie.  She was trying to get on the bed.  Her legg slipped off bed and she was jarred backwards.  I saw the look of pain all over her face.  I wanted to make it better but could not.  She screamed and cried for a long time.  I finally got her comfortable on my lap.  After some medicene and a few hours of rest, we were able to go get some dinner downstairs. 

While downstairs for dinner we met a boy who is here from Russia.  He had open heart surgery one month ago.  He looks great, and is moving around like nothing ever happened.  I look at him and Brooke and so many of the other kids here, and see strength and courage!  One little girl we met had sickle cell.  She became a quick friend to Aidan.  Conversations she had with my mother revealed that she had deep awareness that her life might be short.  And yet she was happy and trying enjoy life. Such little people that try so hard to make their lives normal. I see it also on so many of the parents faces here too.  Many of them are restricted with language barriers, and yet they jump in to help one another make coffee, hold the elevator and so much more.  It is good to see community even where people are complete strangers, walking very difficult paths. 

Tomorrow stitches and staples come out.  Praying that this goes as smooth as possible.  She keeps asking when we can go home.  I hear her!  Boy my bed sounds so nice right about now.  Plus I am missin my hubby and Aidan.  I know the time is coming very soon. 

Thanks again for support and friends who are praying.  It means the world to us.  I know my post lately are a bit frazzled and scattered.  THis is my brain right now, so please excuse.  I want to sound intelligent, but quite frankly do not have the energy!  :) 

A special prayer tonight for my wonderful friend Courtney and her beautiful girl Taylor.  Taylor is having surgery tomorrow in Ohio on her Kidney.  My prayers are with them, for strength and courage.  They have had a rough year and yet, they have remained strong in their faith.  They are a great family, and amazing role models!  Love you guys!

Monday, August 16, 2010

FREE!!!!

Yes we left the hospital last night!  So good to walk out of that place with my little trooper!  Brooke is doing well.  In fact, she refuses to take her pain meds. (She hates the taste)  So we have to only hold her down for the valium.  Then she is taking tylenol for pain.  The nurses said she is one of the hardest kids they have ever seen to get to take meds.  We really tried every trick in the book.  It came to just holding her done and getting the meds in as best we can.  The nurses asked if she was stubborn, ummm well yes she is! :)  So now to it up to mom and me.  Fun! 

We will be at the RM House until Thursday morning.  We can leave then.  She will have her stitches and staples taken out on Wednesday.  For now, we are just trying to rest and feel better.  Mornings are the hardest because her neck is so stiff.  She has to do exercises to strengthen her neck.  She does not like them, but is trying.  We are using heat packs to loosen her neck muscles. 

Her aunts and great grandma sent her packge today.  Brooke had so much fun opening it up.  I love to see her smile!  I know we are headed for better days.  My prayers are that they last.  There is always that chance that only the headaches will get better.  Time will tell. 

THanks again for prayers and encouragement.  It is amazing to have our family lifted up!

Friday, August 13, 2010

Surgery Day 4

Well you have good days, and then you have bad.  Today was our bad day!  Brooke is actually doing better physically.  But emotionally she is a mess.  She spent a lot of time in playroom today.  She also spent a lot of time fighting us on taking meds, changing her pants, and drinking.  Brooke needs to drink more, take her meds good, and go to the bathroom better toleave the hospital.  Right now we have not met any of these criteria.  The playroom is also closed tomorrow.  And half of my relief team (Tim and Aidan) leave tomorrow morning.  I am feeling a little nervous about tomorrow,  She did so well today whenever Aidan was around.  I think it gave her some kind of normal. 

We also dealt with an unpleasent room mate.  She is 22 and in the PIKU.  Not sure why???  But her mouth and her boyfriends mouths have been awful all day.  To make it worse she was treating her mother terrible.  The girl has Chiari.  I just kept thinking waht if this is how Brooke will be?  What if she has this anger as an adult?  I started to slip into this sadness.  As Brooke yelled at me, I felt the tears come.  I looked at one of the Child Life Specialist and said, "I need a minute."  I went to the bathroom and prayed, washed my face, and pulled myself up off the floor.  I went back in the room, looked at Brooke and said, "I am your mother.  I love you and want you to feel better, but you will treat me with respect."  She looked up at me and said, "Ok mommy, I love you."  I know this is a life long road we are on, but I know with a little faith we can get this life thing done!  :)  Praying for a better day tomorrow and a safe journey for 2 of my boys!

Thursday, August 12, 2010

Day 3- Post Surgery

Well today had some good and some bad.  Good- Brooke sat up in a chair for 1 hour and 15 minutes.  She had her arterial line, cath, and one IV removed.  She got a sponge bath.  We walked over to playroom and painted a picture.  Bad- The pain is still bad at times.  She is getting more energy which means she fights a little more with the exams.  They are starting to switch her to oral meds.  She hates these!  She literally has to be held down, have her mouth squeezed open, nose plugged and medicene forced down her throat.  One nurse commented she had met he match in Brooke.  I said, "Yeah she has a lot of fight in her when she wants to."  But she has to take the meds.  Please pray we can bribe her with something to get them down. 

I was reminded today, while watching "Up" that everything of this world should be held lightly.  Even though we desire our bodies to be perfect, they are not.  They were designed to rely on a higher power.  We have been surrounded today by some very negative people.  It is so refreshing to know that we are be watched over and loved.  It is a blessing to have friends and family.  I am so glad Brooke can have loved ones to wrap her up and lift up prayers in her behalf.

Wednesday, August 11, 2010

Day 2- Post Surgery

Brooke is doing ok today.  Pain has been pretty bad.  It is hard to see your child in pain.  It is also hard to keep asking for morphine and valium for your child.  But she is more peaceful after the meds.  Her face just completely relaxes.  You can tell when she needs the meds again.  They are already having her do neck exercises so she does not become stiff.  She sat up in a chair for 30 minutes.  This was very hard.  We painted her nails.  Just in case you are wondering- black with silver polka dots.  Her blood sugar is still fluctuating.  But she ate 4 jello cups, 1/2 cup apple juice and 6 bites of buttered noodles.  So we are making progress. 
Aidan was able to come say hi to her today.  This helped a little too. 
Short post because I need to go cuddle with Aidan.  Please just pray for her pain relief.  I just can't imagine what she is feeling right now.  As a mom I just want to make it all better.  Her daddy is trying to comfort her now.  They are watching all the famous princess movies.  Thanks again for all the prayers.  She told me today that she was like David with her stones from God.  :)
Love to all!

Tuesday, August 10, 2010

Surgery Day

What an amazing day!  From start to finish things have just gone well!  Brooke was a trooper this morning and marched right back to the OR waiting.  She was a little nervous about the hospital gown.  I mean they are kinda ugly.  But with some coxing and tears, she put it on.  They gave her some meds to make her a little loopy, and I was able to carry her back to the OR.  I stood next to her as they put the mask on for sedation. (the anthesiologist was so cool!  Very kind.) As she drifted off to sleep, we named all the colors of Bubble Gum!  Dr Bolognese helped us and even comforted Brooke by rubbing her legs.  With a high five from the anthesiologist I headed out.  Dr B says to me on the way out..."Wish me luck!"  Funny Guy!

We waited 8 hours, and got great news!  He was able to not cut the c1 vertebra.  He feels this will keep her from having a wobbly head and needing a fusion.  He had to make a slightly larger incision.  But all of her cerebellar tonsils are back in her skull cavity.  He used only a small bovine patch.  He is confident this was a good surgery. 

Aidan was then most upset because he wanted to see his sis.  I told him it just was not gonna happen.  With many tears we made our way down the elevator.  As we step off the elevator, there she is!  Brooke right on her hospital bed!  The anthesiologist called Aidan over so he could see Brooke was ok.  They then took her on the elevator to PICU while Aidan went out of the hospital smiling! 

So Brooke was resting peacefully in her room.  She woke up with a scratchy throat from the tubes.  But then she promptly asked "Can we paint my nails?"  Gotta love that!  Then a little later she wanted to color.  Poor thing she would not even be able to hold the crayon right now.  But at least she is positive!  She looks good.  Her blood sugar is low, but then she has not eaten since yesterday. 

I was super sad to leave her, but Tim is taking the night shift so I can be with the boys and help my mom.  Was kinda questioning leaving.  I get back to RM House and Aidan is having an asthma attack.  Of course I remembered his machine, and meds, but forgot the face mask!  So after a little while my mom and I rigged a way to get a dose of allbuterol to him with his machine.  He is now sleeping peacefully.

Thank you all for prayers.  With these prayers we managed to survive a very hard day!  We truly felt wrapped in love!  I can't imagine not having all of our family and friends.  Aome people might say fate or karma, but here we like to just call it Faith!  And in the end, I had smiles from all my kiddos and my hubby!  Can't ask for anything else! 

Monday, August 9, 2010

Tests and more

Today was filled with pretesting, and trying to explain to a 4 year old what this is all about.  Brooke did really well with most tests.  She sat so still why they took her blood and barely even wimpered.  But when they put that blood pressure cuff on, she lost it!?  Go figure.  Then we tried everything to get her on the CT Scan table.  Even taking a CT Scan of beloved lambie.  But no luck.  She would not go after two attempts.  So we left the hospital to go get the hotel for Tim and Aidan.  Which was amazingly complicated!  Just a funny side note, the room they are staying in is on floor 2.  Then the lady at desk tells me all of floor 2 is a parking deck.  I really do not speak the language of NY.  :)  After this it as back to hospital to see if we could get an x-ray done.  We arrive only to find out the script was not faxed over.  Yikes.  We made it back to RM House in time for dinner and even fit in grocery shopping!

Tim and Aidan made it in one piece.  Aidan walked in to see us and promptly announced, "I am never movin here, so don't even ask!"  Gotta love kids honesty!  They where stuck in bad traffic.  As were we yesterday.  2 1/2 hours in NY traffic is not pretty.  If you have not experienced, please do not even comment. :) 

Surgery is set for 8:30.  We arrive at 6:30.  She will spend her entire visit in PICU since the children's wing is under construction.  She seems to be handling everything well.  She loves her scar book, so thanks to all who helped with this!

Wanted to share this amazing video my sister Rebecca made!  Much love to all!

Thursday, August 5, 2010

Never Say Never





I have to say when Brooke talks about how she wants long flowing hair like Rapunzel, I am right there with her.  I love my hair long.  All the fun stuff you can do with it, braids, twists, or just throw it up in a pony tail.  After cutting my hair the last time for locks for love, I said never again.  Oh how quickly things change!  Knowing that Brooke was going to have really short hair and a portion shaved, made me realize how silly my hair obsession really is.  I can't take away my daughters pain, but I can cut my hair short to be like her.  And I can learn to not have vanity over something like hair.  So now me and my bug can share something, however small it might be.

Brooke is such a good sport.  I know every snip for her was a struggle, and yet she got through it.  I love her courage, and just her attitude about life.  Everyone has been telling her how cute her hair is.  She looked at me today and said, "I wish people would quit talking about this hair cut.  I know it looks good."  I worry about her sometimes. The scar she will have, the pain she faces, and then she comes back with comments like this.  God made her so much stronger than me!  I thank Him for that.  Brooke is proving that she can handle this, and even with her own little humor.  And I hope she learns to take never out of her vocabulary.  To never regret, never forget, and never say never!

Sunday, August 1, 2010

Love One Another


I heard this all my life....Love One Another.  My parents, church, school, I was reminded of this often.  I have tried my whole life to love others the way I want to be loved.  Sometimes this hard.  But I have learned to never hold grudges, quickly forgive, and love those I could hate with a compassionate heart.  Most days I do not even think about it...it is just the way God calls me to live.  It is freeing, without hate in your heart.  And it is amazing to see all the good around you.

Over the past few weeks, love has surrounded me and my family.  In so many ways, blessings abound through all the junk.  I teased my mom that the rain did not just come but a whole hurricane.  How does that saying go... bad things come in 3's.  Blah!  Don't believe that for a second.  We have stopped counting over here.  But the good news is, with each scary turn, a good thing appears.  Maybe some days it is just a kind word, or being able to lean on one another for comfort.  But somehow the silver lining is visible.

Today at church was a silver lining kind of day!  I am so blessed to go to a church where people care about each other.  They are not just their to hear a message and go on about their own lives.  They are there to find other people's hurts and try to ease them.  To walk with them on this journey and create a support system, a safety net.  What an awesome thing to have!  I just have to say I am so thankful for the outpouring of love shown to our family.  I can't list all my thanks here, because there are just to many people and I would forget someone.

I do want to share about a few girls who I just am in awe over!  These young women help me on Sunday mornings and other times throughout the week at the church.  Over the years I have watched them grow little kids to a better understanding of God.  Their hearts are so genuine and they do not mind sacrificing their time for others.  You do not see this much, and I jump at the chance to say how impressed I am with them.  But to top it off, they went out on their own and had bracelets made for Brooke!  Lovely Little Ladybug Bracelets!  They did not ask, just acted.  They loved on my little lady!  And for that I am grateful!

To all of you...Thanks!

Thursday, July 22, 2010

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!

Tuesday, July 20, 2010

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.

Friday, July 16, 2010

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!

Monday, July 12, 2010

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!

Monday, July 5, 2010

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.

Saturday, July 3, 2010

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!

Friday, July 2, 2010

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. 

Wednesday, June 23, 2010

My Girl

This little blog will be about Brooke's journey.  Each day she wakes up, I am blessed to call her my lovely little ladybug!  A daughter is such a special gift.  A small reflection of yourself.  And some days a reminder of a simpler time.  In Brooke's case, there is nothing simple about her.  She is a free spirit, someone who throws the rules out the window.  I am reminded of her independence, as Brooke parades through a store wearing her "Fancy Nancy" skirt over jeans, walking in patent dress shoes with toes scuffed from climbing, and hair with mismatched headbands and barrettes.  She is quick to smile, but just as quick to offer an indignant look with hands on hips.  Brooke is just perfectly suited with this personality!  She is a strong willed girl who has to tackle a horrible disease.  And she will do it with paper crowns and plastic high heeled shoes!  

For those of you who do not know what Chiari is, then here is a quick update...Chiari I Malformation is when the Cerebellar Tonsils have dropped out of the skull cavity.  This can lead to terrible headaches, dizziness, body aches, poor balance and a multitude of other symptoms.  I am amazed at how many people suffer in silence from Chiari.  I only heard about it 2 1/2 years ago.  I want more people to understand this disease.  I want more funding so that more doctors understand this disease.  We went to 2 different neurosurgeons, and I knew more about it than they did!  Take a minute and check out our links page.  These links are both good resources.  

Brooke's journey with Chiari began when she was almost 2.  And will hopefully find a happier ending this summer.