Larry, Kaylynn and I flew out for round 5 NYC and our hero Dr. Waner Sunday, September 23rd. Kaylynn does so well on the flights. People come up to us after the flight and the flight attendants always tell us how good she is on the plane. We arrive in NY on time, get to our apartment, and head out in the city for sushi. Kaylynn loves the city. She just loves sitting in her stroller and seeing all the people and lights. She was just scream talking (Kaylynn way of speaking right now) all the way home. As people would turn and look at Kaylynn, Larry would tell them it was our little horn to get people out of the way. :)
Monday morning off to see Dr. Waner for laser. Kaylynn's hemangioma took really well to the laser again. So well, Dr. Waner is going to hold off on doing some cutting by her eye and forehead for now. We are hoping with the laser treatments and the "H" starting not growing as fast now that it will all go away on its own.
We had to have a stress dose of steroids again. And will be on them the next 2 days. Hopefully, they won't mess up Kaylynn as much this time. Kaylynn's natural adrenal glands won't be fully working for a year, so we need the steroids to help her with the post stress of surgery.
The not so great news, some of the front part of her forehead has lost some of the hair follicles due to multiple laser treatments. So we are most likely looking at a tissue expander and surgery to repair the hair line. Not a great big deal, but we don't like any surgery.
We are going to stay on plan for laser treatments every 4 weeks, then Dr. Waner might switch to another type of refraction laser for touch ups. Then we will see if we need a tissue expander for her hair when she is around 2. NY is becoming our home away from home. Meaning, we don't know how many more treatments in NY, it is all up to the "H". These hemangioma's have a plan on there own. So we are scheduled for October, just laser, November, and December. And we will just take it one step at a time. Good news is that we are seeing results, new skin is coming out, and the "H" is going away.
I will say today (day of laser treatment), Larry and I realized truly how emotional these days can be. Sometimes I think I's so much on the go and have so much to plan before I leave, that I don't have time to just stop and think. But today I sat waiting for Dr. Waner and then for Kaylynn to come out from the operating room with Larry and we just looked at each other. Not stressful, just stomach turning as your little baby goes back in the operating room, while you wait until someone comes tell you they are waking her up, watch as she is so small and comes out in this crib with monitors and iv in her foot, and then you watch her sleep most of the day while her face and lip swells. You just want it to be over. You know you are doing the right thing, but you just wish you could take it from her. A true parents love! It makes me realize all that my mom did for me as a single parent even more. That is why we headed to Central Park for a walk on a beautiful day after laser.
We meet some really nice families again today. One couple was in from Washington, DC. Their son hard a large bubble hemangioma on his cheek. Their first surgery and they were really nervous. He went into surgery before Kaylynn, so we talked to them and told them that we were on round 5, and her was in the best hands. Dr. Waner cut out the hemangioma and all that was left was a little line of stitches. Amazing!
Whenever we get sometime and stop packing and unpacking for NY, Larry and I will create a web site about Kaylynn's "H" to help other families. I think we have decided to call it "H in the City". :)
Tuesday morning was the appointment with ophthalmologist. Kaylynn's eyes are still good, she is using both equally, so still no patching necessary. Good news! We caught an earlier flight out of NY and actually get home at 6:30pm. Only at 16 hour day! YEAH! Kaylynn was as usually a pro traveler. As Larry said at the Austin airport, there is no short way to see doctors and come back from NY. Well, maybe if we had our own private jet?? :)
Round 6 is October 25th. all we will have is laser. Yes! We will keep you updated! Hope all is well with all of you!
Love,
Traci, Larry, Reeve & Kaylynn
These were right before laser. New skin. The last one is right after laser. The black is good. The white is the new skin.
