Well, we have made the decision to go with Dr. Swift at Children's in Dallas, TX.
Here is his bio:
Dale Swift, M.D.
Dr. Dale Swift was born in Lorain, Ohio. He attended the College of
Wooster in Wooster, Ohio, where he graduated Phi Beta Kappa in 1980. He
earned his M.D. at Case Western Reserve University School of Medicine
in Cleveland and was invited to join Alpha Omega Alpha, the national
honor medical society.
Dr. Swift completed his surgical internship and residency in
neurological surgery at Columbia Presbyterian Hospital in New York City.
He completed a fellowship in pediatric neurosurgery at Children's Hospital of Pittsburgh in 1992.
Since 1992, he has been an attending neurosurgeon at Children's
Medical Center Dallas, Medical City Dallas Hospital and Texas Scottish
Rite Hospital for Children. He is currently associate clinical professor
of neurosurgery at The University of Texas Southwestern Medical School.
Dr. Swift is certified by the American Board of Neurological Surgery
and the American Board of Pediatric Neurological Surgery.
Dr. Swift's research interests include the pathophysiology of Chiari
malformations, neuroendoscopy in children and arachnoid cysts. He
participates frequently in international pediatric neurosurgical
training, most recently in Bangalore, India, under the auspices of the
International Society of Pediatric Neurosurgery.
Here is a publication that he was involved with:
Suboccipital decompression during posterior cranial vault
remodeling for selected cases of Chiari malformations associated with
craniosynostosis.
Scott, W. W.,Fearon, J. A.,Swift, D. M.,Sacco, D. J.
Here is the facebook site. He is the doctor that is the 2nd one from the left with a big smile :)
https://www.facebook.com/Neurosurgeonsforchildren
This is a tv episode where Dr. Swift is featured.
http://www.youtube.com/watch?v=R3myAl7xsJQ&feature=share
http://www.youtube.com/watch?v=NNrB_pwym34&feature=share
This features Dr. Swift and his family
http://www.youtube.com/watch?v=2wEfVPjWSUI&feature=share
So, anyways you get the idea. There is a lot of info that we covered but the plan is:
New MRI's that measure the CSF flow called CINE that take place in Feb for both girls.
Olivia will have surgery in March 2014. She will have decompression, a dura patch and something done to her C1 spine, which I'll post more about as I understand that more. She is also probably going to get cauterization of the cerebellar tonsils to shrink them back up.
For now, I'm trying to cope and get through the nights. Days are good. Begin alone or trying to sleep without worry is almost impossible. I just pray a lot.
Hugs for all my fans that are going through this and who pray for us :)
Saturday, December 7, 2013
Cerebellar Tonsillar Ectopia
So just found out another kid has Chiari. Well, actually they labeled it Cerebellar Tonsillar Ectopia. I have read it is because it doesn't meet the measurment guidlines for true Chiari. But, I think that looking at the images
That it looks like anything BUT Chiari! I mean it has a classic shape. So, I am just going to be praying that this is going to remain stable.
Why did we get her MRI done? Well, honestly because for years we have known something wasn't "right". The fine motor issues are getting better, but at 12 you should be able to open packages and door knobs! Things like handwriting in school, super slow. Gross motor issues have now got a new name of hypotonia. So, yea, I think the Chiari has affected her over time for sure. This is more proof to me that the size of the herniation doesn't matter. My 4yr old's herniation isn't that bad at all, yet she has significant (actually the docs call it "compelling") syringomyelia.
The plan for now? Physical therapy to increase muscle strength, and working out at the gym. Weight gain is a concern with the limited activity that goes on due to being tired easily.
The goal is to live a great life, a healthy life, and a full of God life. :)
That it looks like anything BUT Chiari! I mean it has a classic shape. So, I am just going to be praying that this is going to remain stable.
Why did we get her MRI done? Well, honestly because for years we have known something wasn't "right". The fine motor issues are getting better, but at 12 you should be able to open packages and door knobs! Things like handwriting in school, super slow. Gross motor issues have now got a new name of hypotonia. So, yea, I think the Chiari has affected her over time for sure. This is more proof to me that the size of the herniation doesn't matter. My 4yr old's herniation isn't that bad at all, yet she has significant (actually the docs call it "compelling") syringomyelia.
The plan for now? Physical therapy to increase muscle strength, and working out at the gym. Weight gain is a concern with the limited activity that goes on due to being tired easily.
The goal is to live a great life, a healthy life, and a full of God life. :)
Monday, November 11, 2013
Sleepless in Oklahoma
So, find myself waking up a lot worrying. I worry by nature anyway, but I can't seem to get comfortable. I know the "plan" is that Olivia needs surgery. But I watch her run around doing so well a lot. Yet, the images tell a different story.
She woke up at 2am screaming about her neck hurting (classic chiari pain in the back of the head/neck area). She always complains at bedtime. Going to sleep is also an issue. Every night constant "my headache is burning" "I have a burning headache". Seems like its harder and harder to get her to sleep as time goes on. Used to be wear her out without a nap all day she would fall asleep faster. Doesn't work so well anymore.
Also, I have made a decision to go ahead and see the doctor in Dallas. The appointment had been pushed off to Dec 3rd. I feel like I need a confident plan. The neurosurgeon in Austin was wonderful. However, he only offered 50% hope for the syringomyelia. He also really wants Abri to be decompressed because he feels that her life will be riddled with headaches and medications that will quit working and the lifestyle adjustments of not moving her neck certain ways won't always work.
To add to the confusion, the neurosurgeon in Oklahoma called last week (yes thank you for getting in touch with us 2 months after the MRI). So, he feels Abri is just fine and that Olivia is not. He is willing to wait and watch Olivia because he stated that he "found nothing on her neurological evaluation". However, I remember he really didn't do anything with her. Not like the doc in Austin. He said she really needs to be decompressed and that basically her entire spinal canal is full of fluid. He didn't offer an outcome that I remember but I don't remember asking. He does use an over the counter patch for the dura (which we are not willing to do at all) so that doesn't work for us. I didn't burn any bridges and just told him we would be in touch. I doubt he will call us back anytime soon looking at the track record :).
So, at this point my mind tells me to wait until summertime. 1. It won't be cold and flu season in the summer and with skull and brain and spinal canal surgery, seems important to not be coughing while in recovery. 2. Our insurance will be better (not because of Obamacare but because we will be on a more preferred network and because AFLAC will kick in for the hospitalization).
I'm learning more everyday. It is so difficult because there are SO MANY stories of people who have waiting and their child has suffered severe consequences or even died from it. The countless stories of people having surgery and still suffering is just as cumbersome to read about. Certain days I put this story away and try to ignore symptoms and issues. Other days, it overtakes my mind. It is a battle of the mind really. A battle that I give to God and remind myself it is his to work out.
We meet with a new neurologist (due to our moving and needing a closer doctor) on December 2. I really hope that we like her. She is a younger grad so I'm hoping for more up-to-date knowledge on Chiari.
As we walk through this time in our lives, I have a goal to draw more near to God. He is the only comfort that an aching heart and tired mind can get. He is the only one who gives answers and peace. He is the only reason I get up each day and work harder to do better. Who knew it was so hard to just keep your children alive? Hugs and kisses to all my fans! :) xxxx oooo
Keep us in your prayers. I am believing for something miraculous.
She woke up at 2am screaming about her neck hurting (classic chiari pain in the back of the head/neck area). She always complains at bedtime. Going to sleep is also an issue. Every night constant "my headache is burning" "I have a burning headache". Seems like its harder and harder to get her to sleep as time goes on. Used to be wear her out without a nap all day she would fall asleep faster. Doesn't work so well anymore.
Also, I have made a decision to go ahead and see the doctor in Dallas. The appointment had been pushed off to Dec 3rd. I feel like I need a confident plan. The neurosurgeon in Austin was wonderful. However, he only offered 50% hope for the syringomyelia. He also really wants Abri to be decompressed because he feels that her life will be riddled with headaches and medications that will quit working and the lifestyle adjustments of not moving her neck certain ways won't always work.
To add to the confusion, the neurosurgeon in Oklahoma called last week (yes thank you for getting in touch with us 2 months after the MRI). So, he feels Abri is just fine and that Olivia is not. He is willing to wait and watch Olivia because he stated that he "found nothing on her neurological evaluation". However, I remember he really didn't do anything with her. Not like the doc in Austin. He said she really needs to be decompressed and that basically her entire spinal canal is full of fluid. He didn't offer an outcome that I remember but I don't remember asking. He does use an over the counter patch for the dura (which we are not willing to do at all) so that doesn't work for us. I didn't burn any bridges and just told him we would be in touch. I doubt he will call us back anytime soon looking at the track record :).
So, at this point my mind tells me to wait until summertime. 1. It won't be cold and flu season in the summer and with skull and brain and spinal canal surgery, seems important to not be coughing while in recovery. 2. Our insurance will be better (not because of Obamacare but because we will be on a more preferred network and because AFLAC will kick in for the hospitalization).
I'm learning more everyday. It is so difficult because there are SO MANY stories of people who have waiting and their child has suffered severe consequences or even died from it. The countless stories of people having surgery and still suffering is just as cumbersome to read about. Certain days I put this story away and try to ignore symptoms and issues. Other days, it overtakes my mind. It is a battle of the mind really. A battle that I give to God and remind myself it is his to work out.
We meet with a new neurologist (due to our moving and needing a closer doctor) on December 2. I really hope that we like her. She is a younger grad so I'm hoping for more up-to-date knowledge on Chiari.
As we walk through this time in our lives, I have a goal to draw more near to God. He is the only comfort that an aching heart and tired mind can get. He is the only one who gives answers and peace. He is the only reason I get up each day and work harder to do better. Who knew it was so hard to just keep your children alive? Hugs and kisses to all my fans! :) xxxx oooo
Keep us in your prayers. I am believing for something miraculous.
NY doc visit
So, now to go over all the information that I know from our doctor visit.
First I want to point out that the TCI facility was much nicer than the hospital. (Although our only experince at the hospital was in the MRI facility).
Next I want to point out that our visit was so awful because on the way Olivia started complaining about her stomach. Well, we went back to the exam room and the PA started doing our medical histories for the doctor. Five minutes after being in the room Olivia (who warned me that her belly was hurting several times) threw up everywhere! All over me all over the floor the chair ....everywhere. This event repeated itself three more times before the doctor came in. So, by the time he met with us, the room smelled of deadness and Olivia was dressed only in a towel! Fortunately, I wore a brown sweater vest over my white shirt so at least God was with me there. We did have a blanket in the car that we were able to wrap olivia in on the way out the door.
Now, the actual visit with the doctor. He came in and informed us right away that the flex extension MRI's look normal for both children. Yay. He then went over symptoms and said neither of them need surgery. We asked about Olivia's Syrinx issues. We also asked about the sacral dysgenesis that the other Neurosurgeon had mentioned. The doctor looked at us and said "do I have those scans?" Personally, I was totally annoyed. He ended up leaving the room to look at the scans in his office. He reappeared to inform us that Olivia had tethered cord but he wasn't concerned. Umm. Hello is this the same doctor that emailed me how concerned he was over her case and how it is complicated and how it can require more than one surgery? Why, yes it is the same one! So, imagine my surprise when after a little more discussion about symptoms he completely changed his opinion to surgery and then proceeded to tell us how he did it. He actually does the decompression and uses a metal plate over the area he removes. He also goes through the dura and uses the patients own "skin" inside the skull to patch the dura back so that their body doesn't reject an outside material. We asked him to go over our scans with us, but he refused. He said he had seen all he needed to (uh ok, we would like you to show us! Right??).
I was so glad to be leaving. Obviously, being covered in puke not ideal. But mostly, because I could tell that this doctor was confused. I ended up speaking with other people that have been seen by him only to hear similar stories about him recommending immediate surgery and then the next year on a follow up telling the families that their child doesn't have chiari anymore and just "pretend it didn't happen". Personally, my opinion is that this doctor probably has too big a case load. He may be a genius surgeon, but I need to know that he will not do the wrong surgery on my kid, because he is mixing up other cases in his head. I know that sounds like a harsh wording but I have no other way to explain it. The sad thing is, I don't dare express this to most folks that have used him because I do not want to hurt anyone and also I don't think that my experience is the only one people will have. Obviously, there are tons of patients who love him and he did good work on. It just won't be our family.
So, the visit was good because I got to see the great TCI place I have wanted to see and I also go to meet with a great neurosurgeon who is well published with Chiari. I am glad God opended my eyes to the truth for our personal situation. TCI is NOT our path. Next please!
First I want to point out that the TCI facility was much nicer than the hospital. (Although our only experince at the hospital was in the MRI facility).
Next I want to point out that our visit was so awful because on the way Olivia started complaining about her stomach. Well, we went back to the exam room and the PA started doing our medical histories for the doctor. Five minutes after being in the room Olivia (who warned me that her belly was hurting several times) threw up everywhere! All over me all over the floor the chair ....everywhere. This event repeated itself three more times before the doctor came in. So, by the time he met with us, the room smelled of deadness and Olivia was dressed only in a towel! Fortunately, I wore a brown sweater vest over my white shirt so at least God was with me there. We did have a blanket in the car that we were able to wrap olivia in on the way out the door.
Now, the actual visit with the doctor. He came in and informed us right away that the flex extension MRI's look normal for both children. Yay. He then went over symptoms and said neither of them need surgery. We asked about Olivia's Syrinx issues. We also asked about the sacral dysgenesis that the other Neurosurgeon had mentioned. The doctor looked at us and said "do I have those scans?" Personally, I was totally annoyed. He ended up leaving the room to look at the scans in his office. He reappeared to inform us that Olivia had tethered cord but he wasn't concerned. Umm. Hello is this the same doctor that emailed me how concerned he was over her case and how it is complicated and how it can require more than one surgery? Why, yes it is the same one! So, imagine my surprise when after a little more discussion about symptoms he completely changed his opinion to surgery and then proceeded to tell us how he did it. He actually does the decompression and uses a metal plate over the area he removes. He also goes through the dura and uses the patients own "skin" inside the skull to patch the dura back so that their body doesn't reject an outside material. We asked him to go over our scans with us, but he refused. He said he had seen all he needed to (uh ok, we would like you to show us! Right??).
I was so glad to be leaving. Obviously, being covered in puke not ideal. But mostly, because I could tell that this doctor was confused. I ended up speaking with other people that have been seen by him only to hear similar stories about him recommending immediate surgery and then the next year on a follow up telling the families that their child doesn't have chiari anymore and just "pretend it didn't happen". Personally, my opinion is that this doctor probably has too big a case load. He may be a genius surgeon, but I need to know that he will not do the wrong surgery on my kid, because he is mixing up other cases in his head. I know that sounds like a harsh wording but I have no other way to explain it. The sad thing is, I don't dare express this to most folks that have used him because I do not want to hurt anyone and also I don't think that my experience is the only one people will have. Obviously, there are tons of patients who love him and he did good work on. It just won't be our family.
So, the visit was good because I got to see the great TCI place I have wanted to see and I also go to meet with a great neurosurgeon who is well published with Chiari. I am glad God opended my eyes to the truth for our personal situation. TCI is NOT our path. Next please!
Goodbye NY!
We decided to go home differently. Well, after paying over $50 in turnpike fees through NY and NJ, we finally made it through to VA. 
We knew we were getting closer to home seeing all the churches and crosses on the road
.
The open road full of truck races
. And just weird cars in general. We saw everything from weird colors, to cars covered in bumper stickers and even a van that was covered in grafiti!.
We made it to Tennessee
and drove through the major cities. Of course when we got to Nashville we found this hot dog stand
Yes, the sign really says "I Dream of Weenie". So of course we had to buy some hot dogs. Even though Halloween was closing in on us, while this seem scary they ended up being great!
We then ate at the ice cream shop right across the street from the hot dog stand. It was called "The Pied Piper". They make their own ice cream. I can't remember what everyone got but I ate Apple Pie and it was so darn good!
So, as we approached Arkansas (only because my navigation was just 1.5 hrs off and what looked like we were staying just outside of Nashville ended up being well into Arkansas oops again this is the importance of the zoom feature on google maps). We stayed in a comfort suites and slept in the next morning. 5 hours home was nothing really. I told the kids it is like 3 movies and a break.
There is no place like home honey!
Next post......back to decisions.
We knew we were getting closer to home seeing all the churches and crosses on the road
The open road full of truck races
We made it to Tennessee
We then ate at the ice cream shop right across the street from the hot dog stand. It was called "The Pied Piper". They make their own ice cream. I can't remember what everyone got but I ate Apple Pie and it was so darn good!
So, as we approached Arkansas (only because my navigation was just 1.5 hrs off and what looked like we were staying just outside of Nashville ended up being well into Arkansas oops again this is the importance of the zoom feature on google maps). We stayed in a comfort suites and slept in the next morning. 5 hours home was nothing really. I told the kids it is like 3 movies and a break.
There is no place like home honey!
Next post......back to decisions.
Thursday, October 24, 2013
New York - Party in Slow Motion part 2
Well, it has been a long week. Lots of good stuff and a few rough family moments.
We had finally made it to New Jersey
and ate at Applebee's there (I have to eat gluten free so I usually pick restaurants I'm familiar with).
(That's my beautiful Mama!)
We were going to try to go by the Cake Boss bakery, but somehow took a wrong turn and ended up in the middle of Manhattan in China Town! So, imagine a big white hi-top conversion van driving down the road there! Honestly, there was so many people everywhere and cars, I do not know how people live and work in busy parts of New York without being stressed out. How can you get anywhere and on time? As an Okie, this was so stressful. Somehow though we did get through the crowd and understand that we did something wrong.
We did make it to our hotel, exhausted and grumpy (Note: never tell your Honey that he's going too fast for you to figure out where your at and then realize you have turned the map upside down.) If I had been driving it would have looked like this http://movieclips.com/6omE-clueless-movie-freeway-freakout/ (PG warning).
We checked into our room which was a two bedroom two bathroom suite. It's been pretty perfect for our week long stay here. Also, we have a great laundry and really perfect indoor heated pool that has been to ourselves with no one swimming here.
Jones Beach was a really fun experience. The only thing that could have made it better was taking a picnic basket (yes Mama I should have listened to you). There was basically no one at the beach on this beautiful 68 degree day with no wind really. Lots of sea shells and sand. Kids had a blast. There was even a little beach shop open which worked out because they all had to literally test the waters and Sarah ended up getting her shoes soaked and covered with sand. So...flip flops is what we bought there and a bag to put the shoes in :)
We also found a McDonald's that was really cool. A big white Victorian house
We went to get the MRI's done at the hospital and they went well. We had some confusion on how to do the flex MRI's under anaesthesia since they don't want to have the head fall forward to block the airway. So both girls had to go into the MRI at first without meds. They did perfect! So proud. Fortunately, they could still see daddy (he goes in testing I stay out with the other one in recovery) and didn't have to anestasized until the head went backwards and they couldn't see him anymore. Here they are in recovery
The rest of that day was spent chillaxing in the hotel.
There was a day between the MRI and the doctor visit so we told the girls we would find something to do around town. The daunting task of pleasing the multiple ages of the kids and my Mama (she just wanted to go by Times Square and the Statue of Liberty) and ourselves, proved to almost overtake us as I got frustrated ended up in the backseat of the van to let my Mama navigate. So, hubby decides to drive around some more and we ended up in a not so fun area. So, we turned around and went back to a better area. Just when I thought the day was hopelessly lost, suddenly, there it was
. Yes for all my organizational fans out there, The Container Store! So, hubby says "wow who knew that was a turn-on for you"?
The sheer excitement of the family behind me (oh no not there mom! Really a box store? How many boxes do you need? (thanks Mama for being the adult in the situation) was drowned out by heavenly angels from above singing as I raced into the store and saw the "Bright Shiny & New" display
. Ok so for all those wondering who have never been in there and wondered if it is worth it...it so is. However, plan to have everything delivered! I loved being able to actually put my hands on stuff I was interested in that I've seen online. And the Elfa stuff...it is pretty amazing. All of their products they carried felt high quality.
In the end the family had settled on that "it was a pretty neat place mom" (Thanks guys). They actually had a good time..but who wouldn't? Areas of your life that you can control in a box? How isn't that a turn on? :)
So that evening we ended up going out to eat (we had been eating breakfast and dinner at the hotel as it is provided in the room package) but we wanted to experience some NY food. We went to Angelleto's and I got Chicken Marsala. Others ordered the Manacotti and seafood pasta. We also ordered a large pizza (I couldn't eat it but man it looked so good!).
Now I have to give props to Mama. While it seems like she is just along for the ride and free food in the pics, she has been invaluable to me. I just couldn't have done this emotional trip without her and I am so grateful that she came along to help me. She has been able to pitch in to give me a much needed break. She has sat in the back of the van helping to assist every whim (it's like the kids think there is a stewardess button in the van they just push "ding I need this" "ding so and so did that".) So thanks to my Mama, for whom without, this party just wouldn't have been as much fun! :)
We had finally made it to New Jersey
We were going to try to go by the Cake Boss bakery, but somehow took a wrong turn and ended up in the middle of Manhattan in China Town! So, imagine a big white hi-top conversion van driving down the road there! Honestly, there was so many people everywhere and cars, I do not know how people live and work in busy parts of New York without being stressed out. How can you get anywhere and on time? As an Okie, this was so stressful. Somehow though we did get through the crowd and understand that we did something wrong.
We did make it to our hotel, exhausted and grumpy (Note: never tell your Honey that he's going too fast for you to figure out where your at and then realize you have turned the map upside down.) If I had been driving it would have looked like this http://movieclips.com/6omE-clueless-movie-freeway-freakout/ (PG warning).
We checked into our room which was a two bedroom two bathroom suite. It's been pretty perfect for our week long stay here. Also, we have a great laundry and really perfect indoor heated pool that has been to ourselves with no one swimming here.
Jones Beach was a really fun experience. The only thing that could have made it better was taking a picnic basket (yes Mama I should have listened to you). There was basically no one at the beach on this beautiful 68 degree day with no wind really. Lots of sea shells and sand. Kids had a blast. There was even a little beach shop open which worked out because they all had to literally test the waters and Sarah ended up getting her shoes soaked and covered with sand. So...flip flops is what we bought there and a bag to put the shoes in :)
We also found a McDonald's that was really cool. A big white Victorian house
We went to get the MRI's done at the hospital and they went well. We had some confusion on how to do the flex MRI's under anaesthesia since they don't want to have the head fall forward to block the airway. So both girls had to go into the MRI at first without meds. They did perfect! So proud. Fortunately, they could still see daddy (he goes in testing I stay out with the other one in recovery) and didn't have to anestasized until the head went backwards and they couldn't see him anymore. Here they are in recovery
The rest of that day was spent chillaxing in the hotel.
There was a day between the MRI and the doctor visit so we told the girls we would find something to do around town. The daunting task of pleasing the multiple ages of the kids and my Mama (she just wanted to go by Times Square and the Statue of Liberty) and ourselves, proved to almost overtake us as I got frustrated ended up in the backseat of the van to let my Mama navigate. So, hubby decides to drive around some more and we ended up in a not so fun area. So, we turned around and went back to a better area. Just when I thought the day was hopelessly lost, suddenly, there it was
The sheer excitement of the family behind me (oh no not there mom! Really a box store? How many boxes do you need? (thanks Mama for being the adult in the situation) was drowned out by heavenly angels from above singing as I raced into the store and saw the "Bright Shiny & New" display
In the end the family had settled on that "it was a pretty neat place mom" (Thanks guys). They actually had a good time..but who wouldn't? Areas of your life that you can control in a box? How isn't that a turn on? :)
So that evening we ended up going out to eat (we had been eating breakfast and dinner at the hotel as it is provided in the room package) but we wanted to experience some NY food. We went to Angelleto's and I got Chicken Marsala. Others ordered the Manacotti and seafood pasta. We also ordered a large pizza (I couldn't eat it but man it looked so good!).
Now I have to give props to Mama. While it seems like she is just along for the ride and free food in the pics, she has been invaluable to me. I just couldn't have done this emotional trip without her and I am so grateful that she came along to help me. She has been able to pitch in to give me a much needed break. She has sat in the back of the van helping to assist every whim (it's like the kids think there is a stewardess button in the van they just push "ding I need this" "ding so and so did that".) So thanks to my Mama, for whom without, this party just wouldn't have been as much fun! :)
Saturday, October 19, 2013
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!
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)
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.
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.)
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 :).
The moon came out big and full in Indiana.
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".)
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
.
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.
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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.
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!
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!
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