To all who are praying for our sweet Will,
First of all, we would like to thank each and every one of you for your thoughts and prayers. My heart is warm just knowing there were people I didn't even know praying for our little guy. It is such a blessing to have family and friends that shower us in prayer! The Lord truly hears them. We are blessed beyond belief with such a beautiful child.
This has been a LONG 8 weeks of testing and waiting. I am so glad to be over with it. For those of you who have not gotten an update, here is our latest news:
Cat Scan was all clear
Kidneys were all clear
Eyes and retinas were all clear
Genetic blood tests were all normal!!!
Our Neurologist said that 80% of the genitic blood test picks up a positive diagnosis, the other 20% that is negative, the person either does not have it, or the gene was not strong enough to be detected. so we will never have an answer on whether or not he has this disease. We do know that the Shagreen patch on his back is closely associated with the disease, but in some cases is not at all. We are believing that will just has a weird patch of skin on his back and it is NOTHING else.
Anywho, with Tubular Sclerosis, tumors can start to grow later in life and since we don't have a difinitive answer, Will is probably going to have to go through these series of tests once a year, probably forever. Every year that the tests come back clear, it is unlikely that he has TS.
We have a follow up appoiintment with his Neurologist on June 12th. Probably to discuss the plan. As of right now, I believe we are clear to have more children.
We are so happy and elated with this news. Please continue to keep our Will in your prayers as we hope nothing EVER arises from this Shagreen patch. Again, thank you all!!!!!!!!!!
Love- Leslie & Bryan Fiscus