Last week Jonathan and I flew to California for his 2nd appointment. Traveling right now can still be a tough decision, but we know how important this medical treatment is for him. California has pretty strict restrictions right now, but we haven’t been doing anything during our visits in 2020 anyway so it is status quo for us.
A little note on post wording going forward. I’ve listed this post as Visit 2 because that is how it’s listed on our paperwork from SCFAI. The initial onboarding visit is not part of the official plan and just gets you started with the clinic. Many people would consider this visit 3 (after onboarding and launch), but I find that confusing going forward. Let me know if you have any questions on this sequence.
Day 1 – Travel to CA
We started our journey Tuesday morning flying DTW to LAX like usual. I took Jonathan by myself for the first time, so Ken could stay home with Clara. This also helps us reduce costs – paying for one less flight, no airport parking fees, smaller room in CA, etc.
Ken dropped us off and walked straight to security. I got TSA pre-check in November and it was totally worth it. We walked straight to an agent, showed our boarding passes and ID and walked straight through security. It was harmonic. If you are a TIP parent and don’t have TSA pre-check get it ASAP. If you’re in the waitlist get it before you start traveling often.
I felt like DTW was about as busy as it was during our last visit in November. Not as busy as in normal times, but not a ghost town. I did feel like more stores and restaurants (to-go) were open, but there were definitely still a lot closed.
Our flight to L.A. on Delta was completely full except for the middle row (currently being blocked through March 31st). I was surprised due to the current California restrictions, but it was. There is a form you’re supposed to fill out for travel into L.A. I filled it out online before leaving Detroit. You can find the form here.
The flight was pretty non-eventful. It’s LONG at about 4.5 hours and it’s hard to keep Jonathan entertained for that long. He always wants to get out. I always bring activities I think he’ll want to do, but it doesn’t always work.
Upon landing at LAX we were able to skip baggage claim and go straight to the rental car bus pick-up. I somehow managed to put all of our stuff in three carry-on bags. I wanted to streamline the trip and avoid the baggage drop and claim areas if possible. A bus came quickly and we were two of four people who road out to the rental car lot.
We have always rented through National and have had great experiences. I joined their free Emerald Club before this trip (otherwise we always used Ken’s membership), which allows you to pick any car in certain aisles. You don’t have to wait in any lines or speak with anyone. Pick a car and go. The cars have always been super clean and in great condition. Jonathan wanted a grey car, so we picked a silver Chevrolet Equinox and went on our way.
I tried a new car seat option this trip – the RideSafer Travel Vest. I loved the idea of not taking a huge car seat on the plane and not renting one with the car rental. I didn’t need another thing to carry by myself with a three year old and car rental ones can be questionable in cleanliness.
We tried the vest on the day before our flight to get it sized right for Jonathan. When we got in the car it was a super easy install. I don’t think Jonathan liked it at first, as it is quite a bit different than a regular car seat. However, we continued to adjust it over the next couple of car rides and he seems to have adjusted. I do think it tends to run small. I got him the small size based on their sizing recommendations and I don’t know if he’ll fit in it too much longer (even though he’s right in the middle of the small sizing in height and weight). Bummer when it isn’t cheap. I would also suggest actually using it at home for a week or two to get better acclimated to how it works. I didn’t do this, but wish I would have.
Once we got the car rental we drove to Long Beach and made a quick stop at a Target for grocery pickup. I generally choose Target for groceries on these trips as I know they have Jonathan’s safe foods. It’s easy and I can check availability of items on the app. I can also do easy drive up ordering.
After Target we finally made it to the hotel – Staybridge Suites in Long Beach. It’s close to Long a beach airport, newly renovated, close to a lot of stores/restaurants and only about 7 minutes to the clinic. We decided to try another new to us hotel this trip because we have a large number of IHG Hotels points. If we can utilize those to save money it all adds up. A lot of people have started staying at the Staybridge Suites in Irvine, but that’s too far away from the clinic and LAX for us on our regular trips.
The hotel was very clean and bright. It had a really large lobby and several gathering spaces down there when those activities can resume. We reserved a 1 king bed studio suite since it was just Jonathan and myself. The room itself was pretty big and very clean. It has a small kitchenette area stocked with plates, silverware, cookware, etc. The only thing the room was really missing is a table area for eating. I used the desk area for Jonathan, but with only a swiveling desk chair it was kind of odd. The kitchen also didn’t have any paper towels, but I later asked for additional kitchen towels and they brought a pack of paper towels with it.
Our room was located on the front of the hotel directly over the lobby and close to Lakewood Blvd. I wouldn’t say the traffic noise was crazy loud, but you could definitely hear it from time to time. I think it was actually coming from Lakewood too and not the 405 for what it’s worth. We also stay on Eastern time when we are in CA, so we start doing the bedtime routine at 5pm local time and are usually up around 3am.
A couple other details about the hotel. They do have Room Service available. I don’t know how allergy friendly they are, but could be a good option for parents. The hotel also has a market area for snacks and was doing to-go breakfasts from the front desk. We didn’t get a to-go breakfast, so I’m not sure what that included. The hotel rooms do not have their own air conditioning/heating unit. There is a control pad on the wall to control the temperature in the room.
Overall we would definitely stay here again. In our limited time in the hallways and elevator we rarely encountered another guest. The hotel was extremely clean and it’s in a great location. Our room was quite spacious for a studio and was plenty of space for two people over four nights.
Day 2 – Challenge Day #1
Today was our first challenge day at the clinic. I wasn’t sure exactly what we’d be doing this day as we had 4 foods to challenge and 3 foods to introduce this trip. Our NP was going to have us challenge two foods today, but they brought in three so we went with it. She did give me the option of only doing two, but Jonathan was eating the foods really well. I didn’t want to risk him being uncooperative the next two days. Today we challenged chestnut (6 grams), flax seed (600 mg), and pistachio (4 grams).
Like always after eating each food, Jonathan had to exercise for 5 minutes to raise his heart rate. He did NOT want to exercise after the first food. He really wanted to take the leads off his arms and legs and just be done. After a lot of coaxing (including revealing my secret toy surprise) we got him to cooperate. The other two exercise periods went better after I convinced him to chase me back and forth in the room and he ran with his new Chase and dinosaur figures.
The most exciting news of the day was that two of Jonathan’s maintenance foods – macadamia and coconut, were being moved to as tolerated. Which means he can eat as much as he wants whenever he wants of these two foods. I find this to be especially exciting for coconut as it opens up a lot of dairy alternatives including cheeses and ice cream. Also not having to abide by the 4 hour rule means afternoon ice cream if he wants!! However, I now need to look for recipes with these two foods to use up the remaining macadamia nuts and coconut flour that we have at home.
Our NP this time is Marcela and she has been super friendly and great at answering any questions I have. She also asked if I wanted a copy of our discharge paperwork today instead of on Friday so I’d have time to look it over. I absolutely said yes as I find it really helpful. I like the opportunity to look it over and ask questions in person should I have any.
After the appointment we basically just played games and hung out in the hotel room. Not very exciting, but necessary with the current restrictions.
Day 3 and 4 – Challenge Day #2 and #3
Back to the clinic for another couple rounds of challenges and introductions these two days. On Day 3 Jonathan challenged denatured camel milk (30 ml) and introduced denatured mare milk (1 ml). It was so nice to only have one challenge this day and only have one exercise period. Both foods were uneventful – just how we want them to be.
On Day 4 Jonathan introduced sesame (20 mg) and cashew (40 mg). Both were in his favorite form – gummies!! The gummies truly are amazing and help parents out tremendously in my opinion. It’s worth noting the flavor of the sesame gummy is now different from the chart most people have seen in the past. It is now pomegranate blueberry instead of melon fusion.
When his wait periods were over we received our sesame and cashew gummies for a couple weeks of at home dosing, scheduled our next appointments and were on our way. I asked about the “cohort” grouping that some people have mentioned online. Our NP just said it was in regards to which building you were always scheduled in and which providers you saw. We are in cohort C and can be seen by any of the providers at 2790 Atlantic Avenue. Cohorts A and B are both at the main building at 701 E 28th Street. I think it has more to do with consistency for patients and their parents than anything. It cuts down on the confusion about where your appointment is located and you have a better chance of seeing the same providers every time. I’m not sure if this will change when they move locations. (Supposedly in April by Costco.)
Day 5 – Travel Back Home
We finally got to go back home on Saturday. We took the first flight out of the day back to DTW. It’s an early morning, but staying on Eastern time makes it not so bad. We left the hotel early, dropped off the rental car, rode the shuttle to the terminal and right through security. As usual the flight is long, but it’s so nice to fly direct.
These long SoCal trips are so exhausting, but it’s amazing to do so much at each trip. I think on our next trip in March we are going to try flying out the same day as our first appointment. This will allow us to condense the trip even further, just cross your fingers for Jonathan’s cooperation!!
Costs
Below is a cost snapshot for this trip. It was the cheapest trip to date with only two of us going.
Flights: As usual, flights were the biggest chunk of the trip. However, they continue to get cheaper and cheaper. They were $286.20 per person which is insane. Ken dropped us off at the airport and I was able to carry-on all our luggage to save money.
Hotel: We stayed at an IHG Hotel this time because we have IHG points to use. We were able to use a mix of points and money. Parking is $12/night at the hotel. We spent $120 for the hotel and $48 for parking.
Car Rental: Car rental for a full-size car was $52/day plus fees and gas tank fill up at the end of the trip. We basically didn’t go anywhere except for the clinic so the gas full up was minimal.
Food: This includes airport food, Target pick-up for Jonathan’s food and a couple take-out meals out for me.
Please let us know if you have any questions about our trip, our appointment or the program. We would be more than happy to answer any questions you may have or help in any way possible.
Disclaimer: This is our experience and Jonathan’s specific treatment plan. His plan is customized for him and would vary from patient to patient. Our experiences are as of this trip and may vary for later trips.
