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As you probably already know, I like to bring in some other families’ experiences of what it is like to travel with their children. I only know first-hand what it is like to travel with my toddler, so I think it is very valuable to bring in other perspectives as well. It is my hope that other families can get some tips about what worked and didn’t work, so that their own family trips might be more enjoyable. So far I have written about traveling with 1 year old Eva, 4 year old Addison, and 2 year old twins Chace and Peyton. Shortly after the post about the twins ran, I was contacted by a man named Stephen who shared with me the story of what it was like to travel with his 10 month old son, Westin.
Westin isn’t just any 10 month old, he is a 10 month old who has some special needs. He has already been through far more in his 10 short months on earth than many adults have experienced. I’ll let his parents tell you more about that in a minute. First, I want to introduce you to Westin and his parents, Stephen and Angel.
Stephen and Angel, before we talk about what it is like to travel with Westin, can you tell me a little bit about yourselves and what your travel patterns where when it was just the two of you?
We are in our mid-30’s and Stephen works for himself doing software consulting (travels nearly every week for work) and Angel is a chemical engineer working in the semiconductor industry in Austin, TX. We have been married for about 11 years and have a 9 year old dog, Jordan, who has probably earned elite status at doggie resorts due to all his time there during our travels!
Shephen has been Executive Platinum with American Airlines since 2000 (losing it just one year since) with over 3,000,000 lifetime miles mostly from business travel. Angel has been Executive Platinum for 2 years and just crossed 1,000,000 miles all from vacation travel. Stehpen maintains top tier elite status with four major hotel chains, Hilton, Marriott (almost lifetime Platinum), Starwood, and Hyatt. We use our miles and points to travel first class, upgrade coach tickets, and stay in some of the best hotels in the world! Traveling was our passion in life, and we took about 20 trips a year.
So what happened to your traveling adventures once you decided to add a baby to your family of two? Did you plan to keep traveling extensively?
After being married for 11 years, we decided to have our first baby last year. While pregnant, Angel flew 51 flights and took our little one to 12 countries while still inside her belly. Our traveling stopped when she was 30 weeks pregnant and was placed on bedrest. That meant she was no longer able to work or travel. Our son was born in February of 2011 and we named him Westin (after the hotel chain). We had hoped to keep traveling and show our son the world (at little cost and in First Class of course) – but life had other plans for us.
What changed once your son was born?
Our son’s struggles with life started shortly after birth when he was placed in the NICU for breathing issues. He got to go home after five days. He was not eating well and not gaining weight. Fast forward 5 months … after 30 days in the hospital over four stays, two surgeries, $400,000 in medical bills (mostly covered by insurance), and lots of tears … Westin was diagnosed with a rare genetic condition called Costello Syndrome that impacts only 200-300 people in the whole world. This is a multi-system disorder that will impact almost every major system in his body – he currently sees 13 different specialists. He is at high risk for cancer at an early age (17%), high risk for heart issues (85%), and will lead a life filled with hurdles: mental retardation, developmental delays, feeding issues, walking issues, behavioral issues, and early death (oldest living currently is 37). He has about a 70-80% chance to live to see his 7th birthday. He will most likely never be able to ride a bike, run in a race, drive a car, attend college, get married, or live independently.
While we certainly have had to shift our focus in life from travel to Westin’s needs, we have had some experience traveling with him that we wanted to share since we know other families are in similar situations with their special needs children.
What trips have you taken so far with Westin?
Westin traveled to Chicago when he was 5.5 months old for the Costello Syndrome conference (in first class of course!). We flew direct from Austin to Chicago and then drove to Iowa where we are both originally from so he could meet many friends and family who had not gotten a chance to see him yet.
After spending a few days there, we drove back to Chicago for the Costello conference from Tuesday night until Sunday. It was great getting to meet other Costello kids.
We also recently traveled to Las Vegas when Westin was 9 months old. We flew from Austin to Los Angeles and continued on to Las Vegas. Westin was in first class again thanks to our free upgrades! 15 other family members from California, Iowa, and Georgia also drove or flew in to meet us. Most of them had never met Westin. We have been to Las Vegas nearly 20 times and this was our first trip with a kiddo! It was interesting for sure! One of us would circle around the casino with Westin in his stroller while the other person would gamble for a little bit. Westin really enjoyed the new sights and sounds of Las Vegas. It sure is colorful for a baby!
What are some of the logistical challenges and possible solutions that you have found when traveling with your special needs little one?
The first logistical issue is packing. Westin has a ton of baggage for a 9 month old. This includes numerous prescription medicines (some needing refrigeration), syringes to administer medicines, prescription formula, feeding supplies such as IV bags, IV pole, a pump, and many other medically related supplies. This is all on top of the normal baby stuff that needs to be packed. Of course, anything that is medically necessary must be carried on in case our checked bags get lost and we need to pack enough supplies to account for possible delays. We also need to consider it will be only two of us to carry all that stuff!
We quickly learned that curb side check-in is a total life saver! We found that actually getting on and off the plane seemed to be one of the hardest parts since we now have a carseat, stroller, and diaper bag in addition to our computers and roller board (with medical supplies). We also bring a tablet for Westin to watch Blue’s Clues when he gets extra fussy. We must have looked overloaded on our last flight since many other random strangers kept asking us if we needed help. One thing we do to ease our packing is buy diapers and water for his formula at our final destination.
One of Westin’s main issues currently is his feeding. He has a G-tube which is a feeding tube that was surgically placed into his stomach. There is a little extension cord that we connect to the G-tube and tape to his belly and then leave hanging outside of his clothes. We then have an IV bag that we fill with his special elemental formula that connects to the feeding cord. Westin needs to be fed about 8-10 hours a day and it needs to be broken up into one hour increments since he cannot handle large volumes at once. The food from the IV bag is pumped into his stomach with a small pump. When traveling, we often bring the pump and IV bag and formula and put it in his little special backpack and hook him up to the feeding cord while we walk around with him in his stroller. On our most recent trip, the line was clogging too much when we did this so we had to go back to the room a lot and feed him. We also have to administer medicines to Westin eight times a day.
Another thing with Westin is his irritability which is due to the syndrome. When we were walking around MGM casino, he started screaming and people 30 feet away were turning their heads. Also one night he started doing his projectile vomiting all over his stroller at a nice restaurant. It was so much that it puddled in the stroller. His pylorus often spasms which causes this vomiting. We did realize the stroller straps are a little too tight with Westin’s G-tube so we did have to call Britax to order longer straps for the stroller (which they offered free of charge).
Westin and most Costello kiddos are terrible sleepers. He often wakes up 15 times a night requiring us to put the pacifier back in his mouth or to rock him back to sleep (and sometimes he will just be awake for a couple hours). We also have to keep a close watch on him since we feed him at night and we don’t want the cord to choke him or get pulled out now that he moves around a lot more. We also have to give him medicines too. So, Angel and Stephen sleep in shifts. Stephen will stay up until about 3 or 4 am and then Angel gets up and watches him while Stephen sleeps. Stephen would often get up at 9am, and then by the time we bathe him, he was ready for another nap so we didn’t get out until noon! The hotel provided us with a pack-n-play, but we ended up laying him on a down comforter with a white pad over it on the floor. Pack-n-plays are difficult for us since we have to be able to reach his feeding tube frequently to administer medicine and to hook him up to feed him. It is just hard to maneuver the syringes when we are leaning over the side of the pack-n-play. We will definitely use them when he is more mobile, but right now at 9 months, he mostly just rolls from one side to another. He might not walk until he is 3 years old or even later. Most Costello kids never crawl.
Due to Westin’s feeding and sleeping issues, we have found that staying at time-share type places make it much more convenient for us than typical hotel rooms. We stayed at the Marriott Grand Chateau in Las Vegas which is actually in a great location (right by Planet Hollywood) and it is very reasonable (less expensive than most Vegas hotels). We own a timeshare so we traded for this one through Interval International. We stayed in a room similar to a one-bedroom apartment. This way one of us can get sleep in the bed while the other is up watching Westin at night in the living room. Also, since we have a full kitchen, we don’t have to make up Westin’s formula in a hotel bathroom! The fridge is also necessary for his medicines. When we stay at a regular hotel, we have to ask for a medical fridge. We are also staying in a timeshare when we go to Orlando towards the end of December.
Another one of Westin’s issues is that he cannot handle sunlight since his eyes are too sensitive. So, we currently have to cover his stroller with a blanket anytime we are outside. We recently purchased sunglasses for him but we are still trying to get him used to them.
I have to ask, since there are so many logistical challenges to traveling with Westin, what is it that makes your family want to continue traveling with him?
We have seen the world and now we want our son to see it, too. When we are at home, he does not get out much (with the exception of his doctor appointments) due to us working along with his feeding issues, medicine schedule, and irritability. But, he needs to get out to experience new things. He has done much better than we would have expected with traveling. He really likes looking at new things. Also, we need to get out and travel some (apart from just business travel) to keep our own sanity!
What type of adventures do you hope to take Westin on in the future?
We are taking Westin to Orlando in December. We will take him to Disney World and if he does well there, then we hope to take him to some of the other parks as well. We are making sure we bring along a stroller that has a full recline so he can nap easily in the stroller so we can stay at the park instead of going back to the hotel. He does not sleep well if he is not fully reclined in the stroller.
We would like to eventually take Westin to some other countries, but we are too nervous currently in case he would get sick. Our insurance might not cover any health issues in other countries, and the health care might not be as good as it is in the US.
If someone wants to learn more about Costello Syndrome or help by making a donation where can they go?
The Costello Syndrome Family Network is always looking for donations. They put on a family conference every two years (this is what we attended in Chicago) at little cost to attendees. This allows doctors, researchers, and families from all over the world to get together to share ideas.
This blog post goes into the details about his first 4.5 months of life until we got the official diagnosis.
We also just found out that a fellow Costello kiddo, a 3 year old girl named Nicola, was diagnosed with cancer. You can read about her struggles here. (Warning, this might make you cry).
Wow, thank you so much to the Thomas Family for sharing both Westin’s story and some inside information of what it is like to travel with a special needs little one. It is hard enough just managing the logistics of traveling with a healthy 10 month old, so I can only imagine how complex it is to travel with a special needs baby. Despite the challenges, I can very much understand why it is important for this family to keep traveling. Traveling is a part of who they are, and now Westin is a part of who they are. Stephen and Angel have found a way to successfully bring together those two very important parts of themselves. I’m sure it isn’t easy, but I would do the very same thing.