Family Trip Round 4 NYC
Wednesday, August 22nd we headed off for our family vacation to New York City. Larry and I never thought we would be taking a 3 year old and 6 month old to NY for a family trip, but I had never seen a hemangioma. "The big spot" as Reeve calls it. We left the house at 10am to catch our flight and arrive at our apartment housing 12 hours later. What a day! There was weather delays at La Guardia airport and after sitting on a HOT plane, getting back off the plane, then back on the plane, we spent 6.5 hours entertaining kids. Whew!
Thursday morning we head out in the city with two strollers and two kids. Kaylynn loves sleeping in her stroller in the city, loud sirens will come by every 5 minutes and she just sleeps. Reeve couldn't stop looking at all the people and yelling "look at that big building." Our first appointment was with the cardiologist. The echo looked good. The thickening of one area of her heart due to the steroids looked good and her blood pressure has gone way down. It is SOOSOOOOO good to be off steroids. We don't see our cardiologist for 6 more months.
Next appointment was Dr. Blei, steroid doctor, everything is looking great. Kaylynn's "H" is still growing some, but we hope to have it plateau soon. We still have to keep her away from the "sick" for awhile since it could take a year for her natural steroids (adrenal glands) to start working correctly. But we are off steroids. Next MRI/MRA will be in January due to the PHACE syndrome.
We then had a family outing to Central Park which was so nice. I hadn't made it there yet, and it was so nice to get away from the city noise and feel like you were breathing fresh air. Reeve loved the playground. We were there everyday.
Friday, family day, we head off to the central park zoo, then to eat at Mars 2112 in Times Square. Saturday, M&M world and Toys R Us on Times Square. Sunday, FAQ Swartz for lunch, making your own custom Hot Wheels Car and playing on the big piano. We are ready for Kaylynn's Laser and head home.
Monday morning, get up at 5am to get our 4th laser. We talk to doctor Waner about the big growth of H . It had been five and half weeks since our last treatment and it was really growing, especially in the heat. We are at the critical periods right now to watch the hemangioma. At 6-8 months the H should stabilize some and then hopefully stop growing. If not, we are looking at more than six treatments. (Let's hope we don't have to go to NY that much more.) She took very well to laser again, which is fantastic. We flew home that day and after plane delays again, we were home in bed at 11:30pm. Just another 18.5 hour day with a 6 month old and 3 year old. Yikes!
One of the worst parts of this laser is that Kaylynn has been off steroids since Aug 6th, which has been wonderful. She sleeps so much better, feels better and eats better. Because of being put under anesthesia, she had to have stress dose of steroids and then we had to wean her for the next four days. This meant, no eating, sleeping (very short, 15 min naps, and exhausted parents. Today, Saturday, was a much better day. I think the steroids are getting out of her system, Kaylynn took all her naps and was eating again. Ready for round FIVE in NY Sept 23rd. In October we will have our surgery to cut the bigger growth parts right by the eye and behind the ear.
Larry and I do count our blessings. Kaylynn is healthy and we are off steroids, not taking chemo, getting rid of the "H", and have a very happy baby. Thank you for all your calls, emails, and prayers. We appreciate all your support and concern. Stay in touch!
