We’ve had a lot of interest from families about what to do, where to stay, how to get around, etc. when they make trips to UNC or Duke for MPS evaluations or otherwise. There surely are families that have made these visits for many more years than us, but hopefully I can give a little insight about some ideas and what is familiar and important to us!
There are two main hotels that we know people stay at (and for us, that the clinical trial pays for) and those are the Residence Inn Chapel Hill and the Residence Inn Durham RTP. We have stayed at both and each has its advantages and disadvantages. Each has a pool and hot tub, although the ones at Chapel Hill are a little nicer, as well as outdoor seating areas and grills. Both serve evening snacks for about a 1 1/2 hour period like wings, soup, or pasta and beverages on certain nights – Chapel Hill (I believe) is T-TH and Durham RTP is M-W.
We have stayed here a number of times, but it is not our regular hotel. I know several families who stay here on a regular basis and they are pretty happy with it, but it just didn’t meet our particular needs when we started coming to UNC on a regular basis.
This is our regular hotel for the clinical trial and the rooms are all 2BR and resemble small apartments. There are 4 units to a building, 2 on each floor. We’ve stayed in about every building, but would recommend that you get a building closer to the front so you’re not walking a great distance if you want to grab breakfast, the evening snack, go to the pool, or do laundry, etc. The hotel is so kind as to let us actually store a large bin with toys, supplies, and leftover dry food items like cereal so as not to have to bring those back and forth or waste each month. Case generally sleeps in a bed with me and I strategically place pillows around him to keep him on the bed, although I used to store a bedrail at the hotel and it’s the only thing they’ve lost. He’s only fallen off once. 🙁
We have also stayed at the Ronald McDonald House in Chapel Hill. It is an inexpensive option, but requires reservations and follows strict rules. If you need to stay for a longer period of time or lack the funds for a hotel, this would be a great option for you. It has lots of snack food, an outside play area, a nice living room, and other families to offer support. The rooms, however, are quite small with single beds (at least the one we had) and no TVs. I say that so you are prepared because having an MPS child has its own quirks and this can either be an easier or more difficult option for some.
You generally would get a rental car (unless you drove and had your own car) to get around the area. There is a bus system and we looked at it, but I don’t know much more. As I’ve said, there is apparently a shuttle to/from the UNC hospitals from the Chapel Hill Residence Inn, but I would confirm that as well as its operating hours. The Ronald McDonald House has a shuttle to and from the UNC hospitals.
Our activities generally fall into about three areas: activities at the hotel like toys, movies, swimming, etc., heading out to destinations, and restaurants.
The rooms have satellite TV with a number of childrens’ channels including PBS, Disney, Nick, etc. and HBO, ABC Family, and HDNet. We are partial to the History Channel so that’s mostly what I care about. There are TVs in all the rooms and wifi everywhere as well.
At the beginning of the trial, it was necessary for us to have baby gates at each room entrance or Case would open/close all the doors and cabinets and basically get into everything. We store a tunnel and used to store an inflatable jumping thing and a Cozy Coupe car that we needed because of Case’s extreme hyperactivity as well. The Durham RTP family room was big enough for those, but the Chapel Hill one is really not. The hotel time also involves a lot of furniture and bed jumping and climbing and we work into it a lot of proprioceptive activities from Case’s sensory diet.
The basketball and pickle ball court are fun in the warmer weather so a playground ball is a necessity as well, although I think you can get a basketball from the front desk. Swimming was Case’s favorite activity of the summer and each hotel’s pool and hot tub are gated around them. Neither is an elaborate pool.
Marbles: This is a children’s museum in Raleigh. Museum is a loosely used term in this context because although it has learning woven through the available activities, it just a whole lotta child FUN. From pretend firetrucks to dress up, slides to pirate ships, crafts to climbing, pretend pizza making and delivery, and the list continues. It is only $5/person and Case could probably spend every day here and never get bored. Frankly, he could spend an entire day in one single area (there are at least 7 distinct areas) and not get bored. We look and plan for trips where we have enough time in our schedule to go to Marbles. With that being said, at the beginning of the trial, he was so much more hyper and without any sense of danger, so we did not take him here until several doses into the trial. That was just our preference because I could see that for his personality, this place would be incredibly stimulating. I’ve not heard of families being disappointed by going to Marbles. Here are some highlights:
[flagallery gid=6 name=”Marbles” skin=midnight align=”alignright”]
Parks: We have found several parks that we prefer around UNC. The first is the Chapel Hill Community Park and it has several play structures, a rose garden, basketball courts, as well as a rec center that sometimes has free special needs nights with access to a pool, gymnasium, crafts, etc. Call the rec center for more information.
There is also another park in Raleigh that we visited that was a great deal of fun with both children and adults! And the ice cream truck came by, so that made it all the better. I can’t remember which park it was, but you’ll find that Raleigh has invested a lot in a fantastic park system that includes fabulous playgrounds – check them out and then here is a map to find them.
Walking around UNC: We’ve had a lot of fun just parking in the lot behind the Starbucks on Franklin Street, taking the stroller, and walking up and around the UNC campus. There is a large grassy and tree-filled area off of Franklin Street if you walk down past Sugarland (see below) where we let Case run and play lots of hide-and-seek. He has been known to enter buildings and attempt to share with classes about MPS. 🙂
Walking around Duke: The Duke campus is incredibly beautiful. Unlike UNC and Chapel Hill, the Duke campus is separate from the city of Durham. It truly appears as the exclusive school that it purports to be because of its old buildings and beauty alone. The area is wonderful to photograph and a walk around Duke Gardens is refreshing. If you have a hyper MPS child who runs away and doesn’t listen, the gardens might be difficult on busy days without a stroller or at least an extra person. There are ponds and often games of football and sunbathers, so an MPS child can easily get into trouble. Poor Barney ended up in a pond on one trip.
Shopping in Carrboro: For some reason, it took us about six months to even discover Carrboro, a gem of a town just outside Chapel Hill. It has great shops (Modern Fossil and This & That Gift Gallery are our favorites) that are not incredibly expensive and are where I did a great deal of Christmas shopping this past year. It is mostly walk/stroller friendly with a bit of difficulty, but worth the effort. Carrboro also has a farmer’s market on Saturday mornings that has wonderful food offerings if you’re staying for a bit and want to cook or even just grab some fresh fruit or pastries (we were there in the spring for strawberries – yum!). There is also a fenced playground by the farmer’s market area so we bribed Case to make it through the farmer’s market with a long playtime afterwards.
Southpoint Mall: Although I’m not a big fan of malls, this one has a great outdoor walking area with fountains and Case loves throwing coins in the fountains. The play area inside is nice as well, especially on a rainy day. I used to have to follow Case around to make sure he didn’t run over other kiddos, but now he’s doing much better. It can get quite crowded at certain times though.
We are suckers for local favorites. If I eat at a chain restaurant on a trip, it is because I am desperate (Chick-fil-A is the exception to that rule, as well as Starbucks, I’ll admit addictions to both). So here are our favorite places to eat in and around UNC.
Top of the Hill: A campus favorite, it sits atop the main intersection on Franklin Street on the UNC campus. There is outdoor seating to overlook Franklin, but we’ve never sat there as it’s either been too hot or too cold. The menu is yummy, they brew their own beer, and they have fried pickles, a favorite in my book. We often bring a separate lunchbox for Case to always have something and I give him tastings of my food. They never mind us bringing food for him. I am always sure to ask for a table with room for his stroller.
Pepper’s Pizza: Pick your own toppings and if you’re lucky, sit in a window booth and watch all the goings-on of campus life pass by. This is located across the street from Top of the Hill on Franklin. One warning though, the bathroom here was difficult to get to and quite messy and small. Don’t expect to take a wheelchair back there.
Sugarland: Also on Franklin Street, this haven of gelato, cupcakes, and coffee is a Case favorite. Also has wifi but a difficult to access bathroom as well.
Foster’s Market: This became a favorite for unique breakfasts and their large (imagine about 6″x6″) $2 slice of coffee cake that is to die for, if you can get it before they run out. We go to the one in Durham although I understand there is one in Chapel Hill as well. They use locally sourced ingredients and also have a store with local foods and special favorite old-time candies. The owner is a published author of cookbooks and has created great dishes. The store is quite crowded so I would recommend sending one person in to order if you’re trying to control an MPS child who grabs at will (as we are). There is seating inside, but part of the reason we go is to sit outside at the many picnic and other fanciful tables. We are sure to either have Case in his stroller or a confined chair and bring his DVD player (where don’t we bring his DVD player and iPad?) as there is a busy road in front, past the tables. Parking can be difficult here at busy times in a gravel parking lot, so plan accordingly.
Weaver Street Market: This is what I would call a miniature and local Whole Foods in Carrboro. It is a coop grocery store with many local foods and a fantastic cheese selection (I am an admitted turophile) as well as a hot and cold food, pastry, and coffee bar with seating inside and outside. The outside tables are by a fountain and under a shade tree and are frequented by chirping birds. There is an open area for child running with a big above-ground root tree that is great for some PT, but it is next to a street so you have to monitor closely. We love coming here in nice weather and frankly could spend the entire afternoon there and in Carrboro.
Merritt’s Store & Grill: This was a recommendation from Tiffany, Dr. Muenzer’s former coordinator. It is a little hole-in-the-wall store with a few tables inside and several picnic and other tables outside (notice a theme here?). It has the best award-winning BLTs in the entire world. The bread (you pick it), the bacon, the lettuce, tomatoes, and mayo are all outstanding and you won’t be disappointed with a single, double, or triple BLT. Grab a few deviled eggs on the side too. You wait in a line inside between drink coolers, so if you can imagine Case opening and closing them over and over again, you can see that an easier idea is to have one person wait at a table with your child.
The UNC hospitals are all connected with an indoor lobby so it makes it easier to move from specialists to radiology to procedure rooms, etc. It has wifi everywhere so that is nice. We are often using Netflix or PBS Kids on the iPad for entertainment there. Also, if your child is an inpatient, they can go to the inpatient play area on the 7th floor of the children’s hospital. It is amazing and although it has been renovated and changed a bit since then, you can see Case playing there in a previous post. It has limited hours (when we went, it was 11a-12p, 2-4p, and 6-7p), but it was worth planning your day around.
For parking, there are three options: valet, parking garage, and special handicapped parking. If we are staying more than a few hours at the hospital, generally we valet because the benefits are worth more than the $2 potentially saved in parking fees. Just so you know, there is no great option if it is raining other than to have one person drop the other and the child off under cover by an entrance and the driver goes and parks. Then if you valet, they drop off in a covered area or if you parked in the regular or handicapped lot, the driver can go get the car and swing back to pick you up.
We’ve never had occasion to visit Duke Children’s Hospital. Many families used to come visit Dr. Escolar for cognitive evaluations. As of September 2011, however, she now leads the newly begun Program for the Study of Neurodevelopment in Rare Disorders at the University of Pittsburgh Children’s Hospital. Now that’s a whole ‘nother post, since I actually lived in downtown Pittsburgh (Shadyside) right near the hospital from 1995 to 1998, but it has been awhile. My only advice: don’t go in the winter! 🙂
Hopefully if you are visiting UNC or the Chapel Hill area, this information has been helpful. This post is dedicated to all the other clinical trial families and those who have given us advice about visiting UNC, as well as Sarah, Jeanette, and Cheryl, and all the other families who want to share information and stories.
Be sure to check into the forum and post about your favorite places and activities to benefit other families! We’d love to make these trips as easy as possible and even incredibly enjoyable for families!