Jakes Clinic
by Erin Castellano on Monday, September 27, 2010 at 5:20pm
So as most of you know we had Jakes clinic last week. He saw 7 specialists and they all sat down afterward and discussed treatment options. We spoke with Jakes doctor on Sunday night and this is what they have decided. His treatment will probably be life long. Which is something we are prepared for. There is no quick fix for his condition. They will treat it as he grows. Right now their main focus is his right thigh, abdomen and right butt cheek. In this area it is mostly lymphatic. The best way I can describe it is fluid filled cysts. What they want to do is treat the large cysts with injections and possibly surgically remove them after they shrink up. Now with the vascular portion of his mass, the overabundance of veins, they want to cut off blood flow to some. There is a lot of information and it all is hard to understand, but Rady Children's hospital in San Diego are willing to take his case on and help treat him. Our next step is a sit down meeting with the surgeon, radiologists and plastics, and they will decide the first step in treatment. They want to begin treatment before he begins crawling and walking but not too soon because he will have to go under anesthesia.
Anyhow, we are grateful they are willing to treat him and looking forward to it. He has been such a happy baby since being on the children's aspirin. This has thinned his blood and prevented clotting from occurring. We are to continue to look for discoloration of the skin and fevers in case his mass becomes infected again, which it is prone to doing, but they also know how to to treat that when it happens.
Thats it! Thanks for all of our little mans thoughts and prayers. Were so grateful.
Love, erin
His right thigh. What looks chubby us actually part of the malformation
Goes from his toes, ankle up to thigh and bottom
Heres his cute "Big" butt. What can we say, we like big butts and we cannot lie :)
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