Last month we headed to New York to visit some new doctors at the Vascular Birthmark Conference. 3 years ago, we met with the same group of doctors in Irvine with very different circumstances. Jake had not been on the medication he is currently on and we were in and out of the hospital every 2-3 months. When the doctors saw him 3 years ago, they called his malformation quite severe. Since he began his medication shortly after that visit, his malformation and KT Syndrome has changed drastically. We were anxious to get their opinions.
Leaving B and T at home was hard, but they were in good hands. Jake was excited to get mom and dad to himself, stay in a hotel, and see the Statue of Liberty. It was our first stop on our adventure.
After our tourist adventures, we headed to the VBF conference on Saturday. Jake went to the kids room while Travis and I attended 5 seminars. Each one pertaining to our kid and KT Syndrome. This time around, the information the doctors had was much greater than three years prior. 3 years ago, Jakes medication was not even spoke of. This time around, it was the main option for treatment they recommended for KT patients. Jake was a great representation of how well the medication worked. We did learn from one doctor that the amount of Sirolimus (medication) they would want to give the patient, could potentially "cure" the lymphatic portion of KT Syndrome. Yet, the dose is far to high for any kid or KT patient. So, we are on the right track. My concern is still the long term side effects of Sirolimus, which are unknown but don't seem to be of concern to the doctors.
Jake was very open to showing the doctors his bottom and leg during the two clinic appointments we had that afternoon. We met with Dr. Rosen, an Interventional Radiologist. He had great information and insight for Jake. We also met with Dr. Delfinian, the leading doctor in the United States for KT Syndrome. He and Dr. Fishman were very optimistic and impressed with how far Jake has come. Dr. Fishman did notice a discrepancy in Jakes legs, one was longer than the other. We are now seeing Orthopedic at Rady to follow his leg growth. This may be why we see a small limp when he walks. Its important that we continue to follow this. Dr. Fishman said when the difference becomes more drastic, a small incision can be made to adjust this in the growth plate. Although with Jake, nothing is small, but we hope that wont be necessary. There were several other operation, in more private areas that I wont go into detail about that we found can also be helped for him down the road. We are very optimistic.
We checked on Jake a few times in the playroom area. There were all sorts of toys, activities, movies and fun things to do. Each time we checked on him, he was in the corner, playing on the iPad with his headphones on. Jake without Bryce is a different kid. Bryce is his safe person. His best friend, and worst enemy. Yet, when they are apart, Jake is withdrawn. He comes alive in school, but it takes time. He has just began to realize he is different and that scares him. It takes him time to adjust and warm up to people he doesn't know.
After the clinics, we explored more of New York. We especially loved Central Park. With all of the walking we did, we took Jakes wheelchair and we are so glad we did. He fell asleep in it twice. We'd push him 10 blocks to central park, he'd jump out, run around and play, get back in his wheelchair and fall asleep on the walk back. Having the wheelchair saves us a lot of headache. When Jake is done, he's done. With the extra blood flow in his leg and up and down his body, his heart works harder to pump blood through his body which then makes him tired. Having the wheelchair gives him a break and gives us the ability to stay out longer.
Overall, this was a trip that was very worth it. We learned a lot about Jake, came back with a ton of new information for his doctors and we spent some quality time with Jake. I don't think I have ever held his had so much for so long. I loved it. having the chance to cuddle him reminded me of the long nights in the hospital, just he and I. He is a sweetheart of a kid, a cuddler, aware of his differences but active and fun.
A huge thank you to everyone who supported us and this trip. The booster.com fundraiser helped fund the entire trip and tonight, we are dropping a donation in the mail to Vascular Birthmark Foundation. We are grateful and blessed.
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