Even though Gavin was diagnosed one year ago this month with KTS or Klippel-Trenaunay Syndrome, I still feel like we are in the processing stage. We 100% agree that is what he has and have been very proactive to get him all of the right care and to set him up with all of the best doctors. Sometimes though, I just feel like we are going through the motions and doing what has to be done. When I allow myself to really think about it or am explaining it to someone else, I start to get choked up and overwhelmed. I know that we are lucky and blessed in so many ways. Gavin’s health and situation could be far worse and we are grateful he can do all he can do. I never want people to feel sorry for us or him, but sometimes I just need to talk about it to help me process and understand it.
When he was first diagnosed, we didn’t allow ourselves to do much online research. We didn’t want to freak ourselves out or spend time on information that was false. This summer, we’ve done a little more research as more things have come up with Gavin. Because his syndrome is so rare (there are only about 2500 people on record since 1950), there isn’t a ton of information. Also, each case is slightly different. The big things we have come to realize is that his health issues will only get worse with age and that he will need a “team” of doctors to help him through it. Right now, we are in the process of building his team. We have been blessed without measure with doctors who truly care about him and us. They are never too proud to refer to or consult with other doctors. Many of them have never seen a patient with KTS, only heard about it.
Here is a list of Gavin’s most recent team:
Dr. Voyles ~ Pediatrician
Dr. Haggstrom ~ Pediatric Dermatology
Dr. Loder ~ Pediatric Orthopedic Surgery
Dr. Contreras ~ Pediatric Gastroenterology
Dr. Matt ~ Ear, Nose, Throat (Consult only at this time)
Dr. Marshelleck ~ Interventional Radiology (Consult only at this time)
Kerrie ~ Physical Therapist at Easter Sills
Tom Whitehurst ~ Orthotics (Lift)
Jeffrey Hill ~ Orthotist (Compression Sock)
Sending Gavin to preschool has stirred up a lot of feelings and emotions. I met with his teachers today to talk about my concerns and his needs. We’ve been blessed that he has been with the same person for a long time or only watched by family. This will start a whole new world and journey for him. I am constantly torn between putting Gavin in a bubble and letting him experience the world like a typical 3 year old. I am also torn between encouraging him to do anything he sets his mind to do and being honest with him about his limitations and things doctors have already said no to. It’s a struggle finding that balance and I pray each and every day I can find it for him!