Hi to all,
Kaylynn, Papa Gus, and I are back from New York. We flew out Sunday morning and Kaylynn was excellent on the plane ride. Our bag didn't arrive until the next flight and it took forever to get to our apartment due to parade in Manhattan, but we made it. Whew! Kaylynn is very attached to mommy and daddy. But after a few hours she was snuggling with Papa Gus. Babies love Gus!
Monday morning, 7:30 was round 2 of laser. It went great. Dr. Waner is very happy with the results and says we should begin to see new skin when it heals. We meet another 4 kids with different kinds of "H's". And everyone just loves Dr. Waner, aka Miracle Healer and magic doctor. Kaylynn did great, she didn't even cry hardly at all coming out of anesthesia this time. She drank her bottle and slept it off.
Tuesday, morning we headed to the ophthalmologist, Dr. Ciesler. Kaylynn's eyes are still good. We then headed to Dr. Blei's office. Dr. Blei manages our steroids and medical health. She analyzes every part of Kaylynn's body to make sure she is healthy. I feel we are in the best hands with her. GOOD NEWS, we are lowering her dosage of steroids.
After visiting with Dr. Blei, we got some not so good news. We have sugar in our urine, because of steroids. But it will help that we are lower our dosage of steroids. We might have another hemangioma under our right cheek. and We have Phaces. Or I could say we are put in the category of phaces. The Texas doctors told us we did not have phaces because our MRI/MRA results where clear. But remember, the Texas doctors don't have as much experience as our New York doctors. Thank GOD, for our NY doctors.
Phaces is hard to understand. Its a newer part of diagnosing hemangiomas. The net of it is that Phaces is having a large hemangioma on the face and head along with one or more other abnormalities. Well, Kaylynn has the large "H" and she has a morning glory in eye right eye. So she has been put in the category of Phaces. Kaylynn also has a slight narrowing in one of the valves of her heart, and narrow artery in the back of her neck. We knew of all of these early on, but didn't know this put us in the Phaces category. The good news, is that we don't have real serious issues that goes with Phaces. The bad news is that we have some medical uncertainty again. The sick feeling you get in your gut. All this means right now is that we have to watch and monitor her very closely with more tests. We have one outstanding question, which is: Can Kaylynn develop any of the bad issues that are common with babies with Phaces in the future? We are hoping the answer is no. The Texas doctors told us no, but we are asking the NY doctors again.
We also saw a cardiologist on Tuesday. Due to the steroids, a part of her heart is thickening which it usual for steroid users. This can cause high blood pressure. But her blood pressure is in a normal range for a hypertension baby on steroids, meaning a little high. But the cardiologist was not too concerned since, we are going down on steroids.
We head back for round 3 July 15th. We will get a MRI/MRA done again July 16th, see Dr. Blei, our ophthalmologist, and ultrasound of chest wall on 17th, and laser with Waner on 18th. We will follow up with our cardiologist in August.
Thank you all of your prayers and all the prayer groups. Please pray that all of our test results are positive. Pray for continued strength for Larry and I. I was really tested this week with only about 16 hours of sleep in 5 days and processing all our new information.
The laser treatments are working great and our "H" is still going away. Its AWESOME, however, for right now, it might be more than a cosmetics issue, as we had previously thought ?????
xoxoxo,
Traci, Larry, Reeve and Kaylynn |
