Family Vacation 2016, Part 1: Philadelphia

We just got back from an incredible two week vacation down the East coast-- a great getaway just to be together as a family, learn & experience new things, and to visit with old friends and family. We are so blessed that our church allows Brett (in fact, encourages Brett) to take time off from being a pastor and get away. We are also thankful for the freedom that homeschooling provides. We were able to take a break from our regular workbooks & learn by experiencing & seeing & doing.

We must have ended up with over 500 photos from the trip, and I have had a hard time picking my favorites! I will let the photos tell the story of our journeys in chronological order, in how ever many posts it takes!!

We left Friday morning bright & early. It was about a 4 1/2 hour drive to New York City, our first stop. We didn't get there until about 1, and it took awhile to manuever through city traffic & find a parking place, so we were starved by the time we got to our lunch destination, which was Ray's Pizza near Central Park. We heard it was the best experience for New York style pizza. At the time, anything would have tasted good to us, but it was pretty good pizza, and the slices were huge!

Then we walked across the street to Central Park just to say we've been there. We didn't really have a plan, and so we didn't really get to see as much of it as we probably could have, but New York was really just a stop for us so we didn't have much time. We of course had to stop at the playground. It is Central PARK, and all.

Jacob LOVED the sand!

Then we did a lot of walking around. Abi got a little whiney, but she has little legs so it wasn't easy on her. It was a little chilly out but sunny and nice. We saw Belvedere Castle, which had really great views of the whole park from the top.

We tried to find the elusive "Turtle Pond" but I'm not sure there were actually any turtles there. Just more walking.

We spent about an hour or two just walking around before heading back to the car and back to the New York City traffic, which was just a little too stressful for this rural country family! We did see some great views of the city skyline from the car.

Our dinner stop on Day 1 was of course Chick-Fil-A, a rare luxury for Vermonters. The first night we spent in a hotel suite in Philadelphia, our "home" for 3 nights.

Day 2 we woke up in Philly and enjoyed breakfast in our hotel then headed out for a day in the City of Brotherly Love. We started out at the Visitor's Center, which had a cool printing of the Declaration on the outside of the building. 

Inside the Visitor's Center, we dressed up in period clothing & got a photo with George.

After getting our tickets for Independence Hall, we headed over to the Liberty Bell. We had to go through security first, but it took maybe 20-30 minutes in line. It was really neat to see up close such a relic of America's history.

The kids were given a packet of worksheets to work on throughout Philadelphia. If they finished the booklet, they could earn their Junior Ranger Badges. I loved the opportunity to get some hands-on learning in while we were on vacation, so we worked pretty hard on those booklets.

After lunch, we headed over to Independence Hall, where the Constitution of the United States was written and signed. It's free to see but we had to get timed tickets and go through security about an hour before our time. The tour was about 30 minutes and the tour guide was completely engaging. The kids were never once bored. He did a great job explaining exactly what went on in this room, walking around and telling us about each person that actually sat in these seats (of course most of the pieces in the room are actually re-creations, but there were some actual pieces from the 1700's). It was surreal to imagine that we were standing in the same place that our forefathers stood all that time ago, debating and perfecting what is now the government of our own country.

After the tour, we headed back outside and took pics next to George Washington's statue, and stood in the spot where Abraham Lincoln gave his inaugural address as President. Again, it was so neat to imagine the founders of our country standing in the exact same places we stood.

We took a short walk to Franklin Square, geared more toward kids-- they had a beautiful fountain, a playground, and a carousel.

Jacob has ridden on a carousel before with me, but never on a horse that went up and down-- we just sat on a bench. He LOVED his first real carousel ride.

And of course our kids can never pass up a playground!

Our day still wasn't over, and we did some more walking. We saw Benjamin Franklin's grave. It was inside a cemetery you had to pay to enter, but you could still see the memorial from outside the gate & that was enough for us.

Next door was Christ Church, where many of our forefathers attended & worshipped. It has much of the original architecture and you can actually sit in the pew in which George Washington once sat! 

We ended our day at Cracker Barrel, another treat for us Vermonters!

Sunday we attended a church service at a Bible-believing evangelical church in inner-city Philadelphia (a really shady neighborhood, in fact, but the church felt completely safe). We were even invited to stay for lunch afterward. The service had parts in French and Spanish-- it was neat to be able to worship with a diverse group of people.

After lunch we headed to the Constitution Museum, the only thing in Philly we really had to pay money for. It was a bit more than we would normally spend, but we felt the educational experience was worth it. Leah has been learning about government & the election during our studies this year so this was a GREAT place to get some hands-on knowledge. We even paid for the special exhibit specifically about the Presidential Election.

Andrew got sworn in as President. They had some pretty cool exhibits like this where you could put yourself into the race. They got to try out a real voting booth, see the timeline of the Constitution, they got to create their own Presidential campaign commercial, "sign" a Constitution, and much more.

Here they signed the Constitution. We had it emailed to us, but I need to look for that still! 

This was in the Founders Hall, where there were 40 life-sized bronze statues of the signers of the Constitution. It was really cool that they could actually get up close to them and pretend to be a part of their "gang."

And introducing our country's newest President, Jacob Cody. By far the cutest candidate I've seen. I'd elect him any day! We'd all get naps, and lots of snacks...

And my second choice for President, Abigail Cody, who decrees that all shall have candy all day every day.

I think Leah, at least, got a lot out of the Constitution Museum (as did Brett & I). It might have been a bit too much for the others, but we are glad we did it, and it was fun!

And the last thing we did was walk to Franklin Court (different from Square), where we saw the remains of Benjamin Franklin's house, and a Printing Press that was set up much like it would have been during his time. It was pretty neat, and we bought a copy of a printing of the Declaration of Independence to remember our visit.

Another fun shot from the second day in Philly, hanging out with Ben:

Another view of Independence Hall from the Constitution Museum. It was such beautiful weather we didn't even mind walking around all day.

The last part of our day was mostly for the kids. We took them to Toys R' Us to look at toys and make a wish list for Christmas. We found this on the shelves. They of course thought this was one of the best things we did in Philly.

Our Life-Changing Experience

Wow, what a week we have had with our little Jacob. It is amazing how quickly life can change in the blink of an eye. The Friday after his 1st birthday, we had a follow-up visit with his pediatric pulmonary specialist, Dr. Robinson-- the one who has been working with us on his noisy breathing/ laryngomalecia. We told him about the visit to the ER back in July for the tracheal spasms. As we described them, he began to wonder if maybe they were unrelated to the breathing issues & instead maybe they were neurological. We went home & he said he would check with some neurologists to get their opinion.

The next day, we were having a regular family day, outside, when Jacob had two more "episodes" like the ones back in July. He would freeze in place, look like he was staring into space, get quite pale with bluish lips, and his arms would be almost "locked" to his body, with a little bit of shaking. It would last about 20 seconds and then he would get very sleepy when he snapped out of it. After the second time, we called Dr. Robinson. He said he was going to call us anyway because he had spoken to a neurologist and they said that indeed they might be neurological & we should get some tests done. So he suggested I take him to UVM hospital ER and get him admitted that night.

We had to go by way of the ER, because that was the only way to get admitted if we hadn't come straight from the doctor's office. Unfortunately the ER in the largest city in Vermont is the worst place to be on a Saturday night. We waited in the waiting room (with at least 30-40 other people) for about 4 hours. For awhile Jacob was his usual happy, silly self, charming all the other patients waiting around. Of course, he got tired after awhile, even had another seizure (which I was able to catch on video this time) and then fell asleep (but not without a great amount of tears).

Finally Dr. Robinson made some calls & personally came to the ER to take me up to the room, which had actually been ready for me the entire time-- we just had to cut through red tape to get there. It was 10:30 by the time we got settled in, and of course nothing had been done yet other than regular vital sign checks. I "slept" on a ridiculously uncomfortable pull-out chair next to Jacob's gigantic "prison" crib. Of course nurses came and went every few hours to check on him. In a way I was thankful for them, because it kept me from being lonely, and I was able to get things I needed without having to leave Jacob in the room.

The next day began a string of doctors and nurses I'll probably never remember. The neurologist saw the video of the episode and said it did resemble a seizure. So Jacob got hooked up (after quite a bit of waiting-- which was the general theme of our entire visit) for a 24-hour EEG. It was a harrowing process, where he had to lay still for about 30 minutes while the tech. measured & drew on his head, then hooked 24 electrodes up all over his little head-- the glue was stinky and sticky and she had to use a cold puff of air to stick them on. I had to hold him still the entire time and he went from calm to crying every minute or so. I tried to occupy him with videos of kids' songs on my phone, which he never would sit still to watch, but that only lasted so long before he would get tired of being held down. Finally it was done and they wrapped him all up and left me to entertain a one-year-old attached to dozens of wires for a full 24 hours. (Which meant I had to stay a second night, which I hadn't really planned on, but thankfully I had enough clothes and could re-wear some.)

Almost minutes after the EEG was set up, he had a seizure. The tech was still in the room. So the neurologist was able to see it right away. He also had another pretty good one later around dinner time. It was an answer to prayers-- I wanted someone else to see what they were like!

Jacob was a real trooper. He hardly fussed much at all, in spite of not being able to do much attached to so many wires. He let me hold him a lot, even watched some cartoons. We put a mat out on the floor for him to play and he even laughed a little, acted like his usual self. 

Because he did have seizure activity on the EEG, they wanted to also do an MRI. At first they told me it would be at 9am Monday (the day after the 2nd night). He wouldn't be able to eat anything for six hours before the MRI. So we waited & waited. They put the i.v. in him. 9am came and went, then it was nearly lunch time. He still couldn't eat, because if we were able to get the procedure, he couldn't have food in him. I was told later that it wasn't the MRI we were waiting on, but the anesthesiologist. And Dr. Robinson told me it was because he was fighting for me to have only the BEST pediatric anesthesiologist. He didn't want me to have just anyone-- because of Jacob's breathing history, he knew Jacob would need special care while he was under.

Even though he couldn't eat, he still wasn't grumpy. Just really sleepy. He slept on and off in my arms all morning, usually only 20 minutes at a time, then he'd wake up and play some, or watch TV with me. We still waited and didn't hear much from anyone. Finally, after lunch, they said it would have to be tomorrow. We'd have to stay another night. He was so happy he could eat again that he ate and ate and ate! And then they came to take the EEG equipment off, and we were even happier.

Once he had the EEG off and the i.v. was unhooked, we were able to explore the floor a little, and found a cool playroom with a ball pit which Jacob loved! It was great to hear him giggling and see him trying to walk around with a push toy. They had some great amenities on the floor, including a Ronald McDonald family room with free snacks & drinks, laundry & showers. All my meals were free while I was there anyway, and the nurses took really good care of both of us. Aside from the ridiculous ER experience, I was impressed by the rest of our care there.

Brett had been staying at home with the big kids while I was at the hospital-- there really wasn't any point in both of us being uncomfortable at the hospital, and the room was small. He did bring them to visit Sunday afternoon when he was all hooked up with his "turban" on. They were a little nervous, I think, but we assured them he was okay. The next night, Monday, we decided to trade places. Brett would stay with Jacob and I would go home to sleep in my own bed. "Sleep" being a loose term-- I still didn't get much sleep, even at home. Of course he couldn't eat again Tuesday morning because he really was going to get the MRI. So Brett found a stroller to take him on a walk. 

I took the kids to our Classical Conversations "school" in Burlington Tuesday morning and left right after to get there in time for the MRI. A mom from school offered to take the big kids with her for the day so we could both be at the hospital. I was so grateful for her-- she fed them dinner, and even sent me home with a casserole & cookies that night when I picked them up! And we were able to focus on Jacob's procedure. They let me hold him on the stretcher all the way up to the MRI room. He fell asleep even before the medicine kicked in. He did so well, although the 2-hour wait seemed forever.. They ended up having to put a breathing tube in while he was under anesthesia because of his laryngomalecia, so it took a bit longer. As soon as he was awake, he was back to his usual antics, charming every doctor and nurse with his cheesy grin, jumping up and down in my arms trying to climb out of the bed.

Unfortunately, we had to wait some more. The doctor who interpreted the MRI did find "something" on the images, and needed someone else to help interpret what it was. That was all we knew when we found out we had to stay a fourth night before that other person could figure it out and come speak with us about it. Brett stayed again and I went home with the kids. Wednesday I packed a bag as I headed back yet again, the fourth trip to Burlington (it's about an hour and a half drive) in four days. I didn't think we'd have to stay again, but I wanted to be prepared. This time I was determined I wasn't going to go home without Jacob. 

As soon as I arrived, a team of doctors had already assembled in our room to talk with us about the results. They took the three older kids to the playroom, where a volunteer was already waiting to watch them for us. The first doctor in the room introduced himself as an oncologist. I knew exactly what type of doctor that is, and my heart sank. There was also a neurosurgeon and a neurologist and a social worker, plus a couple nurses we'd come to know already through our stay. They showed us the images from his MRI, one revealing a white spot that clearly didn't look like it should be there. They explained he has a small, non-cancerous tumor in the left temporal portion of his brain, which is what has been causing the seizures.

The tumor right now is small and does not appear to be growing, or affecting his development. As long as it stays that way, it could be there forever. He will have to have regular MRI's to check it's growth, and he will have to take anti-seizure medication to prevent any further seizures. This officially gives him the title of epilepsy. (Anyone who has recurring seizures is considered epileptic.) We have no idea what this means for his future right now. Every doctor seemed quite positive in their outlook. I asked them many times if it can affect his development and they assured me the EEG showed a completely normal 1-year-old brain, except in the places he had the seizures. There are many people who have lived with tumors like these their whole lives.

Two websites recommended by our doctors: 

He has "complex focal seizures" as described on this website (although he doesn't lose consciousness like it describes).

Helpful Guide for Family & Caregivers

He will take the medication 2x a day, and if he is seizure-free for a year, they will consider taking him off of it. We will always have to carry around his emergency seizure medication to be administered every time he has a seizure over 5 minutes (which has never happened, and likely won't...) He will meet every 6-12 weeks with our team: a neurologist, neurosurgeon, and an oncologist to determine the next step. Right now we are praying that the medication continues to control the seizures and that he can grow and develop like a perfectly normal little boy. 

We know we serve an amazing God (who already showed himself faithful through all the many people who instantly began praying for Jacob & searching for ways to serve us this past week) who can do miracles. We know He is greater than science, and we could have another EEG in a year that shows the tumor has disappeared. We are optimistic for the future of our special little boy, and though there are still so many questions, I don't have to have them answered now. I will just hold Jacob a little closer and remember that God is always in control.