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.