Papa Gus met us in New York on Sunday for a busy three days. Kaylynn slept on all the flights for me again, which was great. She makes these trips much easier.
 Monday was Kaylynn's MRI/MRA for 2.5 hours in the machine. We had to hold Kaylynn off from eating for her 12:30 appointment. Her last feed could be at 6:30am, Papa Gus warmed the bottle at 5:30am, but Kaylynn wasn't hungry. She did great. She only started to get fussy/hungry right before her appointment. I'm so glad she takes a pacifier. I walked her back and laid her on the table while they placed this little bitty mask over her face to put her to sleep. She seemed so little and innocent. She came out awake from the anesthesia, but was sick to her stomach most of the night and didn't eat well.
We got the results back on Tuesday and all is good. She has a thickened area of the Dura part of the brain where the hemangioma is located. This is common with her type of hemangioma. The dura is the outer skin of the brain and has nothing to do with the working parts (learning skills) of the brain. They noticed the left carotid artery was smaller than the right, which we knew about at the 2 week old MRA. This is just an artery that runs up the back of the neck. And they confirm the hemangioma under the right cheek. I know this seems like a lot, but none of it has to do with development or using the brain. GREAT NEWS! It does confirm us being put in the PHACE syndrome category. For us, having the PHACE syndrome just means we watch Kaylynn more closely.
Tuesday was our visit with Dr. Blei, steroid doctor, GOOD NEWS, we are going completely off steroids by Aug 6th. There is no medical reason to be on steroids. The laser will continue to pound down the growth of the "H". Our ultrasound of the chest was all clear too. These are all the test you do with PHACE syndrome.
Next we were off to the ophthalmologist, Dr. Cielser, for dilation again. Poor Kaylynn. All is still good with her eyes. She still has a morning glory which may or may not effect her sight later in life. And she still has a lot of farsightedness, which can all change too.
Wednesday, 5:30am up for Dr. Waner Laser Day. It's raining in NY. YIKES! Catching a cab is not easy in the rain. We head out at 6:15 Central Time, Papa Gus soaking wet, catch a cab and hit the hospital. It was baby day at the hospital. At least 20 babies were there for laser with Waner. Our miracle healer. Papa Gus and I take Kaylynn back to get in her little clown gown and visit with Dr. Waner and Dr. Levitin (Waner's partner, love him too!). They are so happy with her results. We are still on track for about 3 more laser treatments and then nature will help take it's course to get rid of the rest. We might have some more treatments eventually, but they are for touch ups.
Dr. Levitin carried Kaylynn to laser like she was his own baby at 8:30am. Gus and I waited in recovery room. And out she comes again screaming at the top of her lungs. She does not like anesthesia, and Dr. Waner said the laser is like a really bad sunburn for 24 hours. Gus, me, and nurse passed her around for 45 minutes, before she settled down. Breaks my heart! She doesn't cry very often, so when she does she does not feel good. She did great with laser again and the results will keep showing.
After leaving the hospital we headed to the airport to fly home. We wanted out of the city. The rain had closed LaGuardia for 4 hours that morning, so we show up to a crazy and over crowed airport. Kaylynn and I made it through the long, crowed lines. A guy rolled my suitcase for me while I feed Kaylynn in the stroller. Once through security, Kaylynn slept in my arms for 2.5 hours while we waiting for our delayed flight. Larry was on the phone with American getting my connecting flight pushed back in Dallas.
We arrived in Dallas at 7pm and our connecting flight was in another terminal at 7:25. Larry was on the phone with American begging them to hold the plane. The next flight to Austin was not until 9:30pm. Shocking news, American called all people that were late for there flights and had us board a bus on the tarmac and ride around the planes to our terminal and held our flights. We made our flight and we were home by 9:30pm. A 16 hour day. And Kaylynn didn't cry once since leaving the hospital.
Whew it was a long 3 days! I have to brag, and Papa Gus can confirm, that Kaylynn is the best baby. She did not cry at all the three days expect when coming out of laser. She would just ride in her stroller in the busy loud streets of NY and smile and sleep. She gets me through these days. I just love her and kiss her.
Papa Gus is amazing. He does it all. Pushes the stroller everywhere, gets up to warm Kaylynn's bottle in the middle of the night before her last feedings before surgery, changes diapers, plays, holds her, all without me asking. NY is not easy to do with a baby and for medical appointments, but Papa Gus makes it easier.
Exciting news, Dr. Waner was so happy with the results of Kaylynn's segmental hemangioma that they are going to use our pictures and Kaylynn's story for the paper they are writing right now to teach other doctors to not wait for laser treatment. To start the treatments right away. Larry and I are so excited to know that hopefully doctors can learn from Kaylynn's treatment and shorten other babies length of treatment by years. Remember, our Texas doctors wanted to put us on chemo and then start laser when she was around 2-3 years old.
Larry and I are also going to help Dr. Waner's group with their web site to get more awareness about Kaylynn's treatment and progress. I love that Kaylynn can give back and help others. What a blessing! Just like others have helped us.
We head back for our family trip, with Reeve, Aug 22nd. I will keep you updated and send more pictures.
Thanks for caring, your prayers, and support. It means more than you know. Smile, Kaylynn does a lot!
Pictures are of Papa Gus and Kaylynn in the waiting room. Other one is day after laser treatment.
Love to you all,
Traci, Larry, Kaylynn and Reeve |
