Helpful Travel Tips and Info When Planning HH Laser Surgery

by Angela Donn

Traveling far from home to undergo surgery adds stress upon stress. These are a few things we experienced that might be helpful to other medical travelers. And you will find some fun experiences along with the stress and seriousness of the surgical procedure.

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Any time you have to stay for an extended period of time, hotel bills can add up quickly. For both of our surgeries where we were staying for two weeks we leased a corporate apartment. It was awesome. We had two bedrooms, two baths, a full kitchen, in-apartment laundry, dining area, living room, and balcony. Pools, weight room, business center were all available. It cost the same as the cheapest hotel we could find near the hospital but turns out way cheaper since you don’t have to go out to eat every meal. If your loved one is on steroids to help prevent brain swelling, chances are they will eat like crazy.  Having a full kitchen for meals on hand is so helpful. Also,  if your loved one needs to rest for long periods of time, having more than one room is so nice so as to not disturb them but feel comfortable yourself.

It can be very difficult to get into the Ronald McDonald House in Houston. There is high demand and you need to call each morning to check availability. There is no TV in the room and you are not supposed to eat in the room either. That is tough when recovering from surgery and all you do is lay around and the steroids make your child into an eating maniac. But it is clean, there are lots of toys, activities, and other children to play with. A few groups volunteer to make food throughout the week so often there is a free meal. You have access to a full kitchen and laundry. There is one television room per floor.  It has proven difficult to get in (we tried at least six separate times). We have gotten in twice on follow-up visits for shorter periods of time.

Some hotels do offer discounted rates for people who are staying for medical appointments. But sometimes it is just cheaper to go through or I usually find a price on one of these sites then call the hotel directly to see if they can beat that price. You may be able to get a list from a hospital social worker of hotels in the area that offer discounts or have shuttle buses to the hospital.

Airfare can be a huge expense as well. Many charities give away tickets but generally your income needs to be below poverty level to qualify. We were able to get free tickets through American Airlines for one of our trips, and Southwest through another. That has helped out so much because it is generally at least $1200+  for the three of us to fly and we flew five times in one year alone. Check with the hospital social worker if she has any access to airline tickets (that’s how we got the Southwest tickets.) But those free tickets expire so be sure to check the date. One time we showed up at the airport with a reservation not knowing the free tickets had expired and had to buy new tickets right then, which weren’t cheap. We also got a Southwest Visa credit card to earn miles for more medical visits.

Setting up some type of communication to friends and family through the internet can be helpful. I am not a big fan of personal info on the internet and before this all happened I only had one baby picture up of Eli on my facebook page and didn’t even mention his name. Well, now we have a website and a facebook page devoted to him alone!  This is a good opportunity to spread the word about HH and also keep in touch with loved ones about what is going on. At the end of the day, I am too exhausted to talk to people but at least they can check in from time to time to see how things are going.

Packing can be a challenge. We started a list of things to bring at least two weeks before and put everything we need for a normal day on the list. Having laundry available for the longer trips allows me to pack minimal clothes. We need room to pack some toys for Eli. He loves books, art stuff, and legos which are easily packed. We also stop off at the library and pick up bunches of audio books and DVDs. He does not watch a lot of TV in our home, but we make major exceptions for the plane ride and hotel. Netflix, PBS kids, and youtube are great for positive cartoons. We also pack stuff like dishwashing liquid, a sponge, laundry detergent, etc.  Stuff you might not think about for your usual travels but don’t want to have to buy once you get there.

Family may want to come with you for the surgery. We did not want anyone there for the day of the surgery. Although our family is great support, it is a long day just waiting around to hear now and then from the doctors. We wanted to be able to just relax, watch some comedies on Netflix, and not have to worry about if family were comfortable, entertained, etc. My parents came to Texas right after the first surgery but really they weren’t much help. They sure tried to be, but Eli only wanted mom and dad to help. So they made us some nice meals but I think felt a little helpless. My in-laws wanted to come for the second surgery and we asked them not to come. We had been through this once already and knew it was a long trip in which they would not feel very useful. Don’t be afraid to tell your family what you want/need. It is hard to say “Please don’t come.” And it is hard to say “I really need you there.”  Whichever way you are feeling, express it because you do not need to add extra stress to your life during that difficult time.

Even though Eli was 4 years old by his second surgery, we brought a stroller for him. The steroids make him lethargic and grumpy. Having a stroller is so helpful for the airport, or long walks through a parking garage, or really anywhere you have to go. You can also call the airline ahead and request a wheel chair.

While we stayed in Houston, Eli was in love with the Children’s Museum. We went the one evening when it was free and then decided to get a membership. We actually looked to see if there was reciprocity with any Baltimore museums and ended up buying a Maryland Science Center membership. It was perfect because we must have visited Houston’s Children’s Museum 20 times over all our trips there and it was covered under the Maryland membership.  So it is worth looking to see if any memberships you may have or are thinking of getting in your home town have reciprocal memberships with anything in the city of your surgery.

Getting out for small touristy trips may help everyone feel a bit better. Don’t push it too much, but sometimes getting out if your child is able can help. Again, here the stroller would be helpful. You may find a stroll around a park, or the zoo, or an art museum can improve mood. You can also google free things to do in the town you are traveling to. Most museums have a free or discount night. Even just a ride on the public transit system might be fun for your child and not too overwhelming.

Traveling for surgery is an added stress on top of your child’s medical issues.  There is much anxiety for everyone and emotions are high.  Being prepared ahead of time will make this difficult experience a bit easier for everyone.

2015 Family Conference – Last Minute Facts!

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Can you believe the conference is just over a week away!

Here are a few answers to the most common questions: The entire three day event is free!

Friday’s Meet and Greet and Sunday’s Closing Ceremony will provide light dinners. Saturday Symposium at Texas Children’s will have breakfast and lunch.

Childcare is provided for Saturday’s symposium only. A huge thank you to Texas Children’s Hospital for offering trained staff to watch our children on Saturday. It is very unusual to have daycare provided at events like this. Friday’s Meet and Greet and Sunday’s Closing Ceremony will have a craft table with volunteers to help keep the kids busy, but they will not be responsible for caring for the children. Please keep an eye on your children during these events. The workshops on Sunday are for the adults only.

The Houston Marriott Medical Center provides a free shuttle for a two mile radius from the hotel. However, they do not provide a shuttle from either airport back to the hotel.

Please let us know if you have any questions. See you there! Kathy Jensen and Lisa Soeby

Video Blog

This video blog was made by Carrie Fulcher in the UK. Thank you Carrie.

Fun Fact Friday – Will You Be There?

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by Kathy Jensen

Today, I want to talk to the people that are still on the fence and offer some additional reasons you may want to attend the 2015 Hypothalamic Hamartoma Family Symposium. We want you to know that the symposium will be recorded and posted on the Hope for HH website as soon as it is available so that you will have access to all of the presentations even if you are not there. In that way, we are trying to reach as many people as we can and completely understand the time and financial burdens that affect everyone when it comes to travel. However, the symposium is only half of the story.

By attending, you have will the wonderful opportunity of talking with other families and patients with HH. Our physicians are amazing, but they do not live with HH, and thus don’t always understand all of the quirky traits that families experience living with it. I have been incredibly blessed with the chance to talk to a few of the families. I have learned to laugh with my son when he has a gelastic seizure so he does not feel sad because I am sad, that when […]

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Finally Feeling Complete

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by Carrie Fulcher

After our first fundraising event as Hope for HH UK I cannot stop thinking about how good it feels to be supported by such loving and caring people. All my friends and family have watched my journey struggling with a Hypothalamic Hamartoma. They have recognised how difficult the last couple of years have been for me since undergoing unnecessary surgery. I could have let my misdiagnosis get the better of me and for a while it did but I didn’t want this to be the case forever so I had to take control. There was no way I was going to let this unfortunate situation define who I am as a person.

I started to have an overwhelming feeling of wanting to make changes in the UK as currently there is a lack of knowledge about this condition. I wasn’t entirely sure of the direction I wanted to take but after teaming up with some amazing mums who have to watch their children battle with the condition I knew exactly what had to be done.

I watch Faith, a 7 year old little girl suffer daily with her seizures, precocious puberty and emotional difficulties. Also, […]

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Ideas for Fundraising for Hope for HH

by Angela Donn

The Spring and Summer Seasons are a great time to get together with others and enjoy life. One way to feel great is to give. Last year, with tremendous help from Eli’s dance company, a quarter auction was held to raise money for Hope for HH. Here are some of my notes on how you can create a successful fundraiser and feel good about giving back.

There are so many ideas for raising money- like on-line auctions, fitness walks, 50/50 raffles, March Madness Brackets 50/50 tournament, car washes, even asking families to donate instead of giving birthday presents and being over-run with too many toys! Some schools will allow students to pay for a “dress down” day where they donate $2 to dress out of uniform or wear something silly. Have a game night where families donate $5 to play board games one night. Hold a yard sale with neighbors and donate a percentage of the profits. Hold a backyard outdoor movie night and charge an admission fee. So many creative ways to raise some funds!

A quarter auction is a fun way to bring vendors in to sell their wares while donating products to […]

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Family Conference Fun Fact Friday #4

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We are excited to bring you more news about the Hope for Hypothalamic Hamartomas Family Conference which will be held July 10-12 at

Texas Children’s Hospital – Pavilion for Women 6651 Main St Houston, TX 77030

Things to do while in Houston! Here are just a few things to do near the Medical Center-

Houston Zoo

Hermann Park

Houston Museum of Natural Science

Museum of Fine Arts Houston

Children’s Museum of Houston

This site has the top 10 things to do around the Houston area-

Top 10 things to do in Houston

It will be hot and humid but there are plenty of indoor options. This is going to be an amazing weekend filled with fun, learning and friendship. Now is the time to sign up and reserve your hotel!


Family Conference Fun Fact Friday

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Let’s talk travel! The conference and hotel are in Houston at the Medical Center. This is located south and a little west of downtown Houston. This area contains over 18 hospitals in a very small area. There is almost a hospital on every block! For someone that has driven in both Phoenix and Seattle I felt the area was a little confusing and very busy. I have heard some from the east coast felt the area was normal traffic and not too difficult. All depends on your comfort level. The Marriott at Houston Medical Center offers a complimentary shuttle within a two mile radius. Texas Children’s Hospital and the Marriott have parking available for a fee.

If you are flying in, there are two choices depending on which airline you have booked with; Bush International Airport (IAH), 23 miles north, or Hobby (HOU), 14 miles east. You can take a taxi, super shuttle, or rent a car to get to the Medical Center area. Once you are there, you can walk to the conference from the hotel, one block away. If you prefer, inside bridges are available that will take a little longer, but keep you out of the heat.


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Family Conference Fun Fact Friday


Where to stay? We have a small block of rooms reserved at the Houston Marriott Medical Center for 81 USD a night. Friday and Sundays’ events will be at this hotel. The symposium is located just a block away at the Women’s Pavilion at Texas Children’s Hospital.

Please reserve your room soon. We may have the option to increase this block if needed depending on hotel availability, but the longer we wait the less likely they will be able to accommodate us. Some of the rooms have a pass through door so you may connect two rooms for larger families. These are also limited and you will need to contact the hotel itself at 713-796-0080 to check for availability.

The Marriott has two restaurants on site. They are also offering a discount coupon per person for the breakfast buffet at 15 USD for adults and10 USD for children.

For families that do not handle the heat well, there is a way to stay indoors, traveling through the sky bridges. It is a little longer walk, but I am sure it will be cooler. There is also an indoor pool to help cool you off and burn some of your children’s […]

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Please Participate in the Rare Epilepsy Network (REN) Registry


by Ilene Miller

Some of you may wonder why I keep pushing for the Rare Epilepsy Network Registry (REN) so I wanted to share a more complete reply.

My son Mark who just turned 13 also has HH. He was diagnosed a age 5. I live in Bethesda, MD and am an attorney by training. My husband is a surgeon. We helped found Hope for HH with Lisa Soeby and others because until then there was no place to go for trustworthy medically accurate information about HH diagnosis. The foundation works with a board of Medial Advisors from around the world that specialize in HH.

One of the biggest issues we face in seeking treatment is that HH patients and doctors are dispersed around the world. It’s rare for a doctor, unless they are at a specialized center, to see and treat even one HH patient and even more rare for that doctor to see multiple HH patients. Thus, there is a great deal of variability in the treatment of HH patients. In addition, any lessons learned treating an individual patient is not as likely to be shared with other doctors. Questions such as: which surgeries are most successful? who […]

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