The Long Awaited Update...SORRY ALL! :)

 So much to say and not sure that my brain will flow through to my fingers....

We made our trip to Long Island on 11/22.  What should have been a 4 hour trip turned into 6 due to the Giants game and us getting stuck on the George Washington bridge! ACK!

Night 1:  Arrival at the Ronald McDonald House (RMH).  Barbara the ever so wonderful house manager showed us around the AMAZING house and then off to our room.  Waiting for my sweet princess was a TY beenie giraffe, a homemade crocheted blanket and a dr. Seuss book. FOR HER TO KEEP! Of course she was more than elated!!  We went to this little diner around the corner from the house and got monster burgers and filled up on greasy food before bed. What a wonderful evening. Really.

Morning 1:  Testing day.  We went to the Manhasset Diagnostic Imaging center for our first appointment at 1.  She had an Xray, a CT scan and an MRI. Poor kiddo.  What a trooper she was though. The cool thing about MDI was that we were allowed to sit in the room with her while she had her CT and MRI so she wasn't alone in the rooms.  By 4 we were done and she was FINISHED! LOL!  She said she was "over it" :) that's my girl. 

Evening 2:  We left MDI and went on a shrimp cocktail hunt. Kendall was craving the cocktail! We stopped at a restaurant called Benihana and after ordering drinks and realizing there was no shrimp cocktail, we up and left :) It WAS all about Kendall ..... after all.  Ended up at a place called Seven Seas and she got her wish. Gary got Philly cheesesteak, KJ got her shrimp and chicken tenders, I got chicken and pasta...and heartburn!!!  Went back to the RMH and played some Wii and dress up and then watched a movie and took a trip to la-la land.

Morning 2:  9am appointment at the Chiari Institute. This is where it gets a little confusing so if I lose you, I apologize.  We saw Dr. Amit Shelat and Dr. Salvatore Insinga and honestly these 2 men were wonderful. They were so patient with all of our questions and interacted so well with KJ.  Here's the skinny:

Kendall has 2 other conditions in addition to her Chiari I.  She has platybasia - malformation of the base of the skull due to softening of skull bones or a developmental anomaly, with bulging upwards of the floor of the posterior cranial fossa, upward displacement of the upper cervical vertebrae, and bony impingement on the brainstem AND basilar invagination - Basilar invagination occurs when the top of the second vertebrae moves upward. It can cause the opening in the skull where the spinal cord passes through to the brain (the foramen magnum) to close. It also may press on the lower brainstem. The brainstem is a stalk-like part of the brain that connects the main portion of the brain to the spinal cord.  Clear as mud?  Yea, me too.


Basically the doctors said that the Chiari is the least of our worries.  Her brain stem is compromised by her spine. It is putting a large amount of pressure on her spinal chord and brainstem.  Her skull and spine are actually rubbing against eachother with no padding in between.  This causes a "bobble head" effect. Kendall does not have the ability to hold her head in an upright position for very long without her neck getting tired.  Wouldn't know it to look at her.  Because of this KJ has to be careful.  No more trampoline, no roller coasters no horseplay.  At least until after surgery.
 
Surgery. ****stomach falls to feet****  No questions remain about it. It HAS to be done. The question now is WHEN? 
 
Dr. Insinga ordered us to have a dynamic MRI done when we got home.  This was done on Monday 11/30.

He also advised me to keep a journal for the next 2 months to monitor her symptoms and side effects. Write everything down. Watch her like a hawk.  The problem? Kendall has lived with these conditions her whole 8 years of life. How the hell does she know what is normal? How does she know what life is like without the headaches, the weakness, the other nuances??? 

Follow up appointment with Dr. Bajwa here in JC. 12/2:  Dynamic MRI (this is an MRI in which they have KJ move her neck to see if there is still compression on her brain stem when she flexes and extends her neck) shows that her brain stem is definitely compromised when she moves her neck. Solution? Dr. Bajwa prescribed a philadelphia collar (a neck collar that will extend her skull off of her spine to alleviate some of the pressure) for her to wear for a couple hours every night.  She will also start physical therapy for her neck muscles 3 times a week.  If nothing else, the collar and PT will help to strengthen her neck and just prime her for surgery. 

Long and short of it all:  The first week in Feb we will make another trip to LI to see Dr. Insinga to see what the progress is, if any. Hopefully at that point we will know when the surgery will be.  They are hesitant to do it now because of her age.  It is more involved and complicated than just the decompression surgery for the Chiari. It was involve rods and bolts in her spine.  For now, my life is devoted to paying attention to things that she may not understand. To documenting EVERYTHING, to helping her understand that for now, she can't do everything that her friends are doing...no jumping on the bed, no wrestling...just to be careful.  I tell her she is my precious fragile cargo. 

Its. Just. Not. Fair.

So....until February we are ladies-in-waiting :)

On another note:  If anyone reading this ever has the opportunity to donate to a charity, if you have a couple bucks or some spare change, please, please donate to the Ronald McDonald House. This is truly the most amazing charity and it helps so many families get through such horrible times.

Travel day!!!

Here we are. Sunday morning. I spent the night at my grandma's last night to keep my brain going into maximum overdrive.  The kids were with their dad this weekend so mama had too much thinkin' time.

Updates:

Thursday at Grams:
I get a call from Aunt Vicki in NC.  She is sending me funds to help to pay for the initial surgeon visit. And her friend is pitching in to help too.  My God I am so blessed for good friends and incredible family. I love you.

Friday at work:
I get the most beautiful surprise. Many of the wonderful people of 21st Century gave me a beautiful card with some funds to help ease some of the burden I have been carrying about this sudden trip to The Chiari Institute.  Totally unexpected and totally selfless. These are some pretty amazing people and I am so grateful to have them in my life.  In addition to the funds, another very special lady made some gorgeous pink cross earrings for Kendall.  She will be so excited for her new bling!!!  Thank you all at 21st who are supporting, thinking and praying for us.  Karma will repay you.  I love you all.

Friday after work:
A most wonderful friend and I stopped at his mama dukes as she said she had something for me.  Well being extremely terrified to say no as she threatened to take my 1st, 2nd and 3rd born children if I didn't go, we went :)  She had a card that was "From a friend of a friend". I bet you can't guess what was in the card.  Thank you to this "Friend" :) I love you.

Saturday at Grams:
I received another blessing.  My Aunt Nonie gave me a card as well with more ease inside.  I love you.

Re-cap:
I have not a single word to say to anyone that could begin to express how grateful I am. Thank you is just not enough.  It never will be.  Because of all of you, Kendall will be able to see the expert and have some extras while on the trip.  Because of all of you I will be able to focus on making this trip a positive and less scary thing for her.  Because of all of you I can breathe a little.  Smile a little more.  Know that no matter how big the burden of anxiety, my shoulders will be a little lighter now.

I found this poem that not only fits but is nothing but truth:

PRECIOUS GIFT by Sherri Lawrence

When times seem too hard to bear & I l feel like giving up
I vision your beautiful face, the twinkle of your eyes and things of such
The bond we created from my womb to the day you were born
Is a mother and daughter bind that can never be torn
With the strength and guidance of God and the blessings he pours down from above
I want to be the best mom I can be to you and embrace you with all my love
You are as precious as a flower and as gorgeous as a rose
You have been specially made to the very tip of your nose
You are as sweet as honey; such an innocent young child
You are brighter than any star in the sky every time you smile
I want you to be proud of who you are and strive to be the best
Put forth your efforts to achieve your goals and let God do the rest
I will always be your mother first, but I'm also your friend
Your are the most precious gift, that I've ever been given

With All My Love,

Mommy

The Call.

Well today was the day of complete and total emotional overdrive. 

I got the call from the Chiari Institute confirming that Kendall is a candidate for their services.  She was recommended for appointments with both the neurologist and the neurosurgeon.

Our appointment?  Testing begins on Monday 11/23 and consults on Tuesday 11/24.  Yes, THIS coming Monday and Tuesday.  Apparently the malformation is actually 15mm and not the original 13mm as originally thought.  The words..."we are concerned with the size". Ouch.

So  now the insurance frame of mind begins.  I call and find that the neurologist visit will be covered 80/20.  The Neurosurgeon visit is the one I had spoken of before.  $550 up front. We can submit the bill/receipt to BCBS but they will cover only 80% of the allowed amount. Guess what the allowed amount is???  104.00. So that comes to about a whopping $84 that I will receive back. Ouch again.

We're going to stay at the Ronald McDonald House on Long Island which is $50 for 2 nights as opposed to the $320 for 2 nights in the cheapest hotel. Not so ouch.

When talking to Kendall about the trip she was excited and said she "can't wait for our adventure".  Bless her sweet little innocent heart.  She is truly my hero. 

I am asking for more prayers from you all.  We're going to need them.  If you aren't a big pray - er...just a thought would be great.

I will post as often as possible as more information is available.

Thanks again for reading.

11/16/09

Monday night.  Feels like a good night for a cry.

I should hear from the Chiari Institute either tomorrow or Wednesday about whether or not Miss Kendall is a candidate for their services or not.  So maybe I'm just a nervous wreck. 

I saw that someone had posted a response to my last post about a different procedure by a doctor in Ohio but the person didn't leave any contact info or anything so I can't ask questions.  If you happen upon this post please let me know who you are.  If you don't want to do it publicly you can email me at mckkenpey@yahoo.com.

Insurance.  Ugh. don't want to talk about it. To be continued.

Anyone know a good way to either win the lottery, know any get rich quick schemes or know how to add time to a single moms schedule for a 2nd job????  If so, please email the above address :)

So Kendall tells me this morning that everytime she coughs....her head hurts. Ugh.  Just another symptom to her condition. This poor kid.  I have noticed some pretty severe mood swings lately too.  Not sure if it has to do with the Chiari or just her age or both.  Whatever it is I wish I knew how to better deal with it.  My patience has worn so thin. I feel so bad when I yell at her. Really what good does it do anyone? 

On another note:   I really do hate hearing parents talk about how much they need time away from their kids and how their kids always drive them nuts.  Don't get me wrong, I feel that way sometimes too but ever since this all happened with Kendall it makes my skin crawl when I hear other people say it. Everyday I pray that Kendall will overcome this and live a normal life. Everyday I crave her hugs and "I love you mommy's".  I think that every parent needs to take a minute to reflect on life. Reflect on how much we can sometimes take our children for granted.  I could kick myself in the ass for always assuming that my kids were healthy and happy. 

There will never again be a day that goes by that I will not cherish every waking moment I have with my babies. Yes, they will wear me down but you know what?  I chose to bring them into my life. It is my job as a mother to love them unconditionally.  No matter what.

11/10/09

Holy Crap did I get hit hard with a case of the yuckies!!!  Little man Peyton had it last week but thank God Kendall and McKayla escaped it....so far.  The kiddos are with their dad while I am recovering...man I miss them like crazy.

I called the Chiari Institute today to see if they received all the info that I sent last week and to give them an update.

Kendall has experienced 2 new symptoms over the last few days.  Thursday night she was complaining of tingling in her left arm.  She said it kept falling asleep on her and she wasn't even laying on it :(  Then her dad called me to tell me she was complaining that her neck was hurting her. Ugh. My poor baby.  I am hoping the institute calls me back today just for piece of mind. The sooner we get her there the sooner this will all have some meaning and hopefully we can begin our road to recovery. Or at least some relief for her.

11/2/09 Neuro appointment

Sorry it's taken so long to update but life gets in the way sometimes.

We met with Dr. Bajwa on Monday to go over the MRI cervical spine results.  The actual situation is worse than we thought.  Her 13mm malformation itself is pressing on the spinal cord and restricting the fluid flow to and from her brain.  In addition to this, the tip of the spine itself is curved and is also pressing on the cord.  So basically the cord is pinched in between the curvature of the tip of the spine and the malformation creating NO flow in the one cavity and restricted flow in the other.  Clear as mud eh?

So here's the situation. Surgery is recommended. Apparently there are 2 types of surgeries that could be done.  The first is where they would remove a piece of her skull from the back of her head to allow the brain to move out of the cavity and relieve some of the pressure.  The curve on the spine would remain and still restrict some flow but the removal of the skull would help ease it.  This surgery is the lesser of the 2 evils.  It would take approximately 2 hours, she would be in the hospital about 4 days and out of school for about a month.  The 2nd type would require them to go in through the front of her neck to get to the spine itself and basically shave the bone to get rid of the curve. This would alleviate all of the pressure because they would also remove a piece of skull but as Dr. Bajwa put it, this surgery is too "fancy" for her and he will not do it. This one would take approximately 6-7 hours in surgery, a 2 week hospital stay, she would have to wear a halo and would be out of school most of the school year.

What does it all mean?  It means we have a lot to digest. A lot to think about. We could opt for no surgery and just keep monitoring the malformation with MRI's every 3 months but her symptoms would remain or worsen and at some point in her life she would need the surgery anyway.  Seems smart to do it now while she is still yound and resilient.  But who wants their child to have to have brain surgery?

We have contacted the Chiari Institute on Long Island http://www.chiariinstitute.com/ to set up an appointment for a second opinion.  Dr. Bajwa HIGHLY recommended we go through all the motions to make a sound decision for Kendall.  We won't know for a few weeks if and when her appointment is with them.  Hopefully after our visit we will be more educated and be able to make the best decision for Kendall.

She knows she may be having surgery on her brain.  She is scared but the funny thing is she hasn't even asked why? or What is wrong with me? She is more focused on if the hospital will have good food and if mommy will be there with her.  I'm telling you this kid is phenomenal.

***sigh***  I don't remember the mommy handbook saying I would have to make life altering decisions for my child.

Night before the Neuro appt....

Well, it's the night before we see the neurologist for the second time and tomorrow we go over all possible options for Miss Kendall.  My stomach is in knots.  I am saying a million prayers and hoping they will be answered.  I will post tomorrow evening when the kids are settled in for the night....

Fingers crossed everyone!!