NY or Bust! A Party in Slow Motion (part 1)

Admittedly, New York is not a place I ever wanted to visit.  However, that is where The Chiari Institute is and where we are scheduled for a consult this week coming up.  After the trip to Austin, TX we decided to take all the kids and try to make a family vacation of it.  22 hours of driving, plus stops, one-way in a car with 7 people, yea sure this could be great fun!

So, I went back to viewing YouTube RV videos of families surviving on the road.  Inspired by some people's organization, other families skills at being able to cope in any situation, I felt ready.

So here is what our van looked like before we loaded it up:

   

The night before leaving we loaded all the storage bins, goody fun bags and suitcases. 



  We also had the kids sit in their assigned seats and went over all the rules.  The plan was to leave at 6:00am sharp.  It seemed perfect.

We swung by to pick up my mom and we were on the road (sort of on time   6:37am)

we leave Tulsa, OK.  We were hoping the kids would be sleep still and that would give us some time early, but no we ended up putting in a movie and they watched it wide-eyed!  The story begins:

Into the unknown, on the road right out of the city, it was still dark at 7:15am  .  Light reveals how VERY foggy  the world is around us, in 40 degree temperatures (Praise God because I HATE hot weather).     
 So, if you want to know what a field of foggy cows look like at 75mph here it is.

The sun begin to rise on this day to give us a better view of everything around us. 

At lease now we can actually see what we are smelling!  I try to plan for everything and I actually have vent air fresheners that can help with unwanted outdoor and indoor smells lol.  You cannot always roll the window down if someone has an unwanted toot and you get lucky enough to pass by a dead skunk on the side of the road at the same time.  All I can say is "thank you Febreeze".  They have the best car air fresheners!  Keep calm.  Be prepared.  :)

On the road you see pretty much everything....you have games for car tags and signs.  You see people driving all kinds of vehicles; old, new, fancy, practical.  You see stuff on the side of the road dead and alive.  Apparently in Oklahoma on the way out your bound to see an occasional travel pop up camper .  You also learn other things like in a van it is better to have people repeat what someone is needing in the very back versus yelling it out at the top of your lungs.  So, you explain that they just need to pass the message up to the front of the car.  Seems perfectly logical so when someone may say they need a "tissue" and by the time the request gets to the front you will find yourself trying to figure out who is having and "issue" and what the "issue" is over.  Mom was sitting in the back and I'm trying to help with the "issue" and Mom is trying to figure out who has the "issue".  After everyone is confused over the "issue" the booger is gone.  Never to be found again (please God).  

Then you make it to Missouri.  (Yes you never really are prepared for those 75mph pics of road signs.)   Finally!~    I had forgotten how great Missouri is.  We lived there for almost 5 years.  They have electronic roadsigns that say things like "Keep your Kids buckled up at all times.  MODOT cares"  or "Share the road with motorcycles. MODOT cares". 

Not too long later we found ourselves in Springfield using the restroom.  Hubby opens the door and yes, I forgot to shave, he lets me know that my legs look like Velcro.  (Thanks for the complex.)

Every now and then I made a mistake of "trying" to nod off and was sort of successful while the kids watched a movie.  I woke up at one point in the middle of a truck race  where semi's try to pass each other on cruise control and somehow your car is in the middle.  It is those nano-second, speed busting moments that you just "think" your not claustrophobic. (You know where you are moving past the trucks but at the opposite of warp speed. ) But do not worry about me.  No one let me make that mistake again.  Everything from needing tissues, to new dvd's, to the occasional lost item in the fun goody bag (of course I understand that problem after the use of my purse every day) . 

As we approached St. Louis, we instructed the kids we were going to stop at the science museum there for 1.5 hrs.  We would leave no later than 2:30pm (in our minds be driving on the highway).   

 

That museum is great because you can do the whole thing in an hour (just exhibits not the Imax or planetarium).  It is simple in it's layout, literally right off the highway and really good stretch on the legs.  The parking was $10 but the museum was free.  They had a lot of wonderful kid things to do and a technology exhibit which was fun.  They had things from past to present .  That was fun for us old people :). 

 

As we left St. Louis at 2:45pm  to beat rush hour and get over into Illinois, we snapped a few pics of the Arch.  

 The drive through Illinois was easy, but it seemed like it was only a tree-lined highway. 

Of course I was never bored.  Ever.  There is the occasional technique of pouring a drink in a cup, passing snacks around and puzzles to do like getting out your child's headphones tangled in a Slinky . 

The moon came out big and full in Indiana.

 

Our end to the day was in Corydon, IN.  We almost made it there but stopped off at Denny's to eat.  I have not eaten at Denny's in a long time.  However, the food was amazing.  Really, it was great.  The kid's menu is really good there as well   and I loved the picture on the front of that menu. 

We all slept like rocks and got on the road by 9am.  Well actually to be honest the parking lot.  We were supposed to be on the highway by 9am but for some reason it took us 45 minutes to get back in the van.  The luggage was loaded and the rest of the time was spent finding everything from lost slinkies to sippy-cups.  Re-arranging good bags, plugging headphones back in and picking out the next movie!  It was ridiculous and we could have been on a "how not to travel" reality tv show series.  I mean this is normal every day driveway stuff, but at the hotel, I know we looked like we had lost a child in the car somewhere.  People diving up and down under seats and pillows. Blankets and butts moving all over the place through the windows.  Total Chaos.  We are finally all seated and the personal dvd player I have hanging for the 4yr old who refuses to watch anything other than Tom and Jerry stops the van once more from moving. As we back out of the parking space she yells "press the play button".  (In fact, she will yell that every time we get into the car and will constantly remind me that one must use caution when being a responsible parent.  We bought her red headphones that have an automatic volume safe for kids ears.  This however poses a problem when everyone is talking or another movie is on at the same time as your child will randomly yell out "keep it down I'm trying to hear".)

 

 

Indiana went by way too fast, but probably because of the night driving.  It was a lot of farmland.  We drove it in the morning but there just wasn't much that we remembered going through it.  Before you knew it we were headed into Kentucky. 
 
  Bridges and tunnels.  We ate McDonald's on the road, stopping for the bathroom and more gas as we pushed forward to get to Pennsylvania.  I decided to drive to give hubby a break.  So, I drove about 2 hrs.  Unfortunately, there was this crazy traffic jam due to construction.  There was about 10 miles laid out of cones and barrels and moving all busy traffic to one lane.  This is a picture the construction they were doing after 40 mins of bumper to bumper
. 

 

Yes, really it is a crane bent over a bridge with  one work truck and no one there.  However, the view from the bridge was very pretty . 

 As I was driving now towards West Virginia we passed some huge tires and my hubby commented "those would make a fun tire swing" and then I asked him to take the only picture I'll ever ask him to take again of the tires .  So, that is what those are. But marching on unfortunately only a few more minutes to a bathroom break. 

Hubby took back over the driving and we were in West Virginia!    Driving into a forest?!    Up the mountains most of the way!  . 

Charleston West Virginia somehow ended up in downtown searching for Starbucks, which was in a hospital (oops definitely ZOOM IN when searching for Starbucks to ensure it is NOT inside a mall or hospital) was not what we thought it would be and we decided to get gas and keep going.   We did see a lot of nothing but winding mountains that made some of the kids car-sick and we would see the occasional churches and homes off in the distance that were very pretty.   The Mountains are really beautiful for the first hour. 

 

  After a while, you feel like you are just winding and curving to keep yourself from becoming carsick.  Decided to turn the music on the radio for family sing-a-long time.  The first and most appropriate song that came on was "I will Survive" by Gloria Gaynor.  A few other songs came on that I remembered well from growing up and the radio host announced that "we will be back to the oldies".  OMG right?  So, we are the "oldies" generation and our parents are the "golden oldies". 

Night fell quickly after dinner at Applebee's and driving down the forest mountain now!  At some point as we were in Maryland we stopped at a gas station.  Mostly for coffee and the bathroom.  Found a nice one called Sheetz.  However, it wasn't until my family pointed out to me what a "visitor" I was.  I didn't realize my normal life was so comical.  I went into the store shouted "y'all to the potty first" (of course I was a little loud all my kids hit different isles in the store had to round them up).  Then while I was ordering my coffee on this computer for them to make I got my ticket and had to pay for it first.  Well, I am at the register and the guy says to me "is that all for you".  My kids are out of the bathroom wandering around the store trying to pick a treat out and I said "for me yes, but I'll probably be back 10 more times" and I smiled at him.  He looked at me and said "that's fine I'll be here for another hour" I said "oh your a lucky man" fully expecting him to get that I was joking.  Well, he didn't understand apparently and he looked at me so weird and then put his head down like I had insulted him!  I said "oh I'm just jokin" and he just gave me my receipt and wouldn't make eye contact anymore!  Well the 10 more times at the register after that checking out ended with me at a different clerk's counter and him finding things to keep busy to avoid me!  Awkward right?  I hollered to the kids and hubby to "load up" and realized my mom was still in the store.  So went in to get her and finally left.  So, I was discussing what happened and we all decided it was the shock of a bunch of Okies stopping in at 9:30pm at night (thank you time change we didn't calculate into our trip).  I was NOT my kids wandering around in boots calling me "big mama" or random terms like "y'all".  I don't know what they were thinking because they are the ones with the "accent" lol. 

Well one of the goals I had was to try to take pictures of the signs as we entered the states that say "welcome to_______".  Of course some state prefer to have there's places behind a tree or around a corner so it's impossible to get them.  However this is the sign I had to get a picture of and even made hubby back up on the highway to get the picture .  Even at night the road was entertaining the kids.  Just as you would think they would nod off to sleep we would be blessed with an exciting tunnel to go through.  Somehow we ended up taking the wrong highway and got on the PA turnpike.  We went like 50 miles and had to pay $13.83!  Is that nuts or what?  Hubby says he will never again gripe about our turnpike in OK! :)

We finally reached Harrisburg, PA and over the hill next to the hotel is Bass Pro!  (Now that feels familiar in an unfamiliar place.)  Checked into the hotel at 11:00pm.  We put on pj's, did teeth, medicines and kisses and went to sleep!

So, sleeping in for me these days is 7:37am.  An hour ahead.  Fortunately, breakfast was ready to go downstairs and we were all excited about our big day at....drum roll.................Hershey's!

On the way there we thought people were protesting because they were holding signs and marching around in black.    However, they were collecting money for cancer everywhere there. 

 

Almost to  Chocolate World! 

 

 

 

 

 

 

 .  So the key here was to get there early (yay a God reward for getting up) where we never waited in line. 

 

 

 

Once inside  we bought tickets and made our own candy bars. 

 

 

We skipped the trolley tour (at $15 per person no matter the age) and spent the money on t-shirts instead.  We did get to go on a free factory tour where they put you in a wooden train and roll you through in 15 mins explaining every thing about it and every now and then these singing cows would appear.  It was really neat to go in person and they have a waterpark and amusement park (we didn't do of course pressed for time and with Chiari you don't do many roller coasters).  It was perfect weather (67 degrees but not windy so really nice).  It started getting crowded by 11:30am.  When we left it started to rain.

 We went at ate at Red Robin (they have gluten free yay).  Fortunately the rain stopped.

Across the street to the outlet shopping area where they had so many good stores, we went to everything from Yankee Candle to Bath and Body Works.  We hit Claires and Justice for the little girls

and they even have an Under Amour store there (best undies in the world according to my dad).  They have all kinds of name brand stores like GAP and Tommy Hilfiger. Starbucks was there too ;) . 

We landed back at the hotel for a couple hours of rest and then walked across the street to the Mexican place to eat.  It was sprinkling walking over but we all had on our hoodies :).  They had a perfect kids menu

  and so the homeschool mom came out in me and I started teaching Abri about our drive.  It poured rain while we were there but the rain stopped when we were ready to leave (thank you Lord).  Promised the kids swimming, but bribed them to get out early with a Monster's Inc. movie playing in the room. 

As they get ready for bed, I can't help but think about the day tomorrow.  Three hours and twenty-one minutes is what separates me and the family from New York.  It's a true party in slow motion! 

Texas - Surviving 16 hours plus stops

So we ended up leaving Wednesday October 9, 2013 after school for Texas.  Only taking the two Chiari kids on this trip we decided to ensure they would be B-U-S-Y with activities, food, movies and Innotabs.

I packed each child a kit that looked like this:

    

I also bought a 3 drawer organizer for the van at Target.  I find it easier to see in a drawer than dig through bags all the time.  I recommend adding a little Velcro to the drawers to keep them closed when you stop.  It works well.

Finally this is what we looked like ready right after we got gas and were on the highway headed to our destination.

 

   

Kids started with a movie                    Dad Driving               Mom- (don't you hate taking your own pic?)

Well, anyways we stopped for dinner about 2 hours after driving and ate.

Of course when you are driving you see all kinds of people, buildings, police and sometimes even a big fire!

After a bit we watched the sunset and both kids were fast asleep for the last hr to our midway Dallas.

 

We stayed the night and got up, grabbed breakfast and left early for the next 4hr drive on to Austin.  We stopped at 2hrs into the drive for lunch and arrived at the hotel about 2:30pm.  Fortunately we had a comfortable room ready and it looked great!~

      

Finally the morning came on October 11, 2013   

 

So, we didn't wait long at all before we went back.

 I let them take their goodie car bags in to play between the professionals  that came in the room to do vitals and history.  That really made it much better, because they were able to keep distracted from the amount of time it takes to wait.

We got there on time at 9:15am for our 9:30am appt. They came out to tell us right away that Dr. George had to go to a trama of a baby with pieces of skull in their brain and it would be 30 mins. (I was thinking 30 mins? That seems fast!). We started with the nurse and then the PA comes in and does history and does all the neuro tests. It was funny because apparently my 2 Chiari kids cannot "walk a tight rope". And my CM SM can't balance on right side well. Apparently that is common with CM people??? 

Well she no more than left and Dr. George appeared. So, I suppose you could say they definitely kept us company. Dr. George was great with the kids. He definitely does not want parents to "help" their kids answer a question. I made that mistake and he said "mom it's not a quiz you don't need to give her the answers"! I can't remember what the question was, but he definitely wanted to talk directly to the kids. He ran "racing" them down the hallway (my CM SM kid gallops when she runs. Always have and it looks like a skipping type of run). He then had us follow him to a different part of the office to view the MRI scans. He was very detailed in explaining to us that our 6yr old just looks like a CM and he couldn't see anything else on those scans (but I'm so irritated because we burned the MRI's and checked the images before sending and they were all there and somehow either the mail or their office staff messed up the scans so there were only 6 to 7 pics total for both of them!). I had the scans I have been posting on FB for ya'll to see on my phone and he said "text those to me". So I did. Well he said with the 6yr old he would go through the muscles and tendons in the neck NOT cut them away at all to work and remove some of her skull and cut into the outer dura only. He said a lot of surgeons make the mistake with kids of cuting the muscles and ligaments in the neck like they do on adults and trying to reattach them at the end and in kids that doesn't work. He explained the complications associated with the dura removal. Then he said the opposite for 4yr old CM SM. He said that he would go through the muscles etc. and that he would be opening her inner dura looking for blockages or tissue he may need to remove to see if that is causing the syrinxs. He showed us pics of a different patient before and after surgery that had a syrinx similar to our 4yr olds (not as big and hadn't stretched her cord as far and she was 13) but the shape was similar. It looked so much better but it was years later. He said maybe it would reduce in size about 50% but probably always be there . I asked about shunting her and he said no he does not want to do that but can't say he never would because sometimes circumstances require it but that it was usually from multiple failed surgeries with scar tissue that requires shunting. He said 3-5 days in the hospital and the surgeries would take 1.5 hrs. He said he only operates on 20-30% of the CM cases he gets. We talked about my 6yr old CM that is doing so well with modifications but he says that is "still" treating your child. He said that if you wait too long you can miss a window of opportunity to help prevent future symptoms. Like the modifications work right now. At some point they are not going to work anymore and when that day comes the pain she will feel will be unbearable. 
He said many times that he wasn't going into detail about all the things they look for in the surgery (I think he didn't want to overwhelm us). He didn't recommend doing both kids at the same time but was willing to do it. He said he feels each child deserves their own attention and it is hard to give each one that at the same time (recovery as a parent). We asked him about anterior issues causing the CM but he skirted around the response saying that relates to the CM 1.5 or 1.0 etc. but ultimately they all require the same attention of needing more room. So I believe that he feels that decompression is the treatment for all CM cases, however it could be that he didn't understand exactly what we were asking. I tried to clarify the question later during the discussion but he still went back to the decompression resolves the issues. 
They wanted better scans and then wanted to schedule their surgeries. I left telling them I wasn't quite ready to schedule the surgeries and that I would get them better scans. 
Dr. George seems very very skilled. He has very steady hands and was able to multi-task. When asked which child was more urgent for surgery (CM SM or CM for age) he said 4yr old was more compelling. OH that reminds me, when I mentioned Dr. Mapstone saying that they could outgrow the CM he looked at us with a funny disbelief look and said "no because at 6 their head is 95% adult size already. The brain is done growing and the skull too and the skull thickens on the outside not the inside and face as well with fat. At 4yr old about 80-85% done growing but that since 4yr old is 100% blocked surgery isn't an option with her. It is a must. 
I thought ya'll might like to know about our visit. I wanted to post it all asap so I didn't forget anything. We are still going for the TCI consult, but Dr. George is wayyyyyyyyyy better than the OK NS we saw.  

When we left we drove the whole way home without stopping.  We hoped they would fall asleep but stayed away the whole time until the last 70 miles lol.  They were good and I thank God for many things, but last night especially the TV in the car and

   STARBUCKS!  :)

Chiari and Retroflexed Odontoid and Basilar Invagination

So, now that I understand what Chiari is I am learning about Retroflexed Odontoid and Basilar Invagination.

Let's start with RETROFLEXED ONDONTOID; this is where the odontoid bone on the first vertabrea is bent backwards.

Here are pictures I got from  http://www.chiarisupport.org/photo/normalvschiari?xg_source=activity



Mostly what I can find is this is related to "instability" and that it "kinks" the brainstem.  I would love to see good comments on places to go to learn more about this.  I have spent a few days researching off and on and really can't find much out there except blogs with people's situation with this condition.  However, I can't really find a good medical site to help give a better reference.



BASILAR INVAGINATION:

   http://www.dizziness-and-balance.com/disorders/central/cerebellar/basilar%20invagination.htm

Basilar invagination is a craniocervical junction abnormality where the tip of the odontoid process projects above the foramen magnum. It may be congenital or acquired (also termed basilar impression) and is often associated with platybasia. There is stenosis of the foramen magnum and compression of the medulla oblongata resulting in neurological symptoms, obstructive hydrocephalus, syringomyelia or even death.

Ref:  http://radiopaedia.org/articles/basilar-invagination

Here is another definition I like:

This is a rare condition. To understand it, it is important to know how the spine works. The spine is made up of 33 bones, or vertebrae. These and the discs between them provide a passage for the spinal cord and nerves. The spinal cord itself connects the nerves of the body to the brain.

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.

This is similar to Chiari malformation. That, however, usually is present at birth.

Ref: http://www.cedars-sinai.edu/Patients/Health-Conditions/Basilar-Invagination.aspx

So this is basically saying that here is a condition that is like Chiari only the spinal cord is going up into the brain!  Ouch.  That has to hurt right?





A really good reference was here http://www.northshorelij.com/cushing-neuroscience-institute/for-healthcare-professionals/case-studies-june-2013-AD


 

Before surgery                                        After Surgery

Free Falling and......

Well, along with Chiari Malformation and Syrinx, I am also discovering that there are other things I must now research.

1.  Tethered Spinal Cord and Occult Tethered Spinal Cord
2.  CSF Malabsorbtion
3.  Scoliosis
4.  Retroflexed Ondontoid
5.  Basilar Invagination
6.  Ehlers-danlos syndrome (EDS)

Perhaps other things.  I am so shocked this is all related!  I mean the most important thing as a parent when your child is ill is to find the "boo boo" then "apply the care where and as needed".

I'm learning this is a lifelong condition that requires tons of medical monitoring and care.  I have learned that my child with the syrinx issues going all down her spinal canal could become paralyzed or die from this in a worst case scenerio.  I have learned that surgery is not a cure.  I have learned that I have to try.

I have been literally pushed off a cliff and I am learning to fly.  I am free-falling in mid air and trusting that God will catch me or let me land perfectly.

We have ONE LIFE here that God gives us.  I'm letting God direct my perfect path.  Things are falling into place that ONLY God could do.

What I'm doing while I the ride?  I'm educating myself and other people with headaches and weird symptoms to never give up on finding their answers.  I am learning about diet and food (currently trying to gradually ease into a Paleo diet.

I'm driving to Austin next week to see our first Neurosurgeon to find out what his plan would be then I'm coming back home for a few days then I'm driving to New York to meet another specialist to find out what their plan is.  Then I'm comparing.  I even learned of another Neurosurgeon in Miami and Chicago.  Maybe I'll go see them too?  I do know when God tells me I'm going to hear Loud and Clear what he wants me to do and Matt and I will be in agreement.

So, please, just let go and free fall and trust God in your situation.  It is so liberating!