Results & Moving Forward

Sunday, April 1, 2012

At the beginning of the year we met with a cardiologist to discuss the results of Joel's echo that he had in December. The echo showed rhabdomyomas (non-cancerous tumors) but thankfully the cardiologist said they don't appear to be causing any issues or blocking any major parts.. He also said there is a good chance the rhabdomyomas could decrease in size as Joel gets older. Let's pray that happens!
We were sent home with a Holter monitor to record his heart activity for 24 hours (which is fun stuff with a toddler by the way) and thankfully the results came back all clear. We are suppose to see the cardiologist again in the summer for another echo. Please pray his little heart will continue to be okay!

In March we met an ophthalmologist and received more good news. Joel's vision is great and he appears to have NO spots on his eyes! The ophthalmologist  wants to see Joel yearly unless we start to notice anything unusual.

This is a little off subject but the morning of Joel's eye exam we went to Seattle early so we could check out the aquarium. He LOVED it. We tried to let him walk around as much as possible {oh yeah, he is full blown walking now!} but there wasn't much he could see from his level. I think our next adventure will be to the zoo when it warms up a little. Sounds fun huh! :)

Okay, back to the subject..  :)

I was able to have a long discussion with Joel's pediatrician, Dr. B, about all of  the tests results and what the next steps should be. Dr. B agreed that it was time for someone to give us a clear diagnosis (does he have TS or not?) so we can begin to move forward with whatever is needed to help Joel. He has been reviewing all the notes that SCH has been sending him, and he thinks it's safe to go ahead and say yes--Joel does have tuberous sclerosis. The moment Dr. B said it out loud my heart sank. It was the first time anyone had actually said it to me.

So now we're moving forward. We have enrolled Joel in a Early Intervention program since TS brings a risk of developmental delays. Right now he seems to be on track  (although, we are a tiny bit concerned about his speech but I will talk more about that later) so for now he is just in a playgroup that meets once a week. He has a blast when we go, and the best part is he is learning SO much from it. A bonus--last time we were at playgroup we learned there is another little boy in the class with TS. I didn't get a chance to speak to his mother but the teacher is suppose to formally introduce us next time we go. I'm really excited to meet someone local that can relate to what we're going through with this TS journey!
site design by designer blogs