A Long Overdue Update On Joel's Health

Friday, December 7, 2012

The last time I blogged about Joel's health was back in April.. so I guess it's time for an update..

We saw the cardiologist again in the summer. Joel hasn't any issues with his heart (praise God!), and the rhabdomyomas have actually DECREASED in size which is awesome news! We are praying the rhabdomyomas will go away completely as Joel grows. The cardiologist wants to see Joel again in a year.

We continue to see the neurologist every 3-6 months. We actually just saw her in November before Thanksgiving because Joel had an MRI of his brain. Everything looked great--meaning, none of the tumors have increased in size and none were blocking fluid. We had a clinic appointment with the neurologist following the MRI and we were finally able to see images. (We were never shown images after his first MRI.) He has tumors all over his brain but most are on the left side, in areas that the neurologists think causes him to have the seizures. We asked for an exact number of how many tumors are on his brain but the neurologist didn't have the notes from the radiologist yet.

{Before his MRI.. giving Oso hugs}

He was seizure free for a year which was/is awesome! Unfortunately after hitting the one year mark he started having seizures [that came in the form of staring spells] so the dose of his seizure medicine was increased. He hasn't had any seizures (that we've noticed) since, though! According to his doctors all we can do is keep up with his weight and increase his seizure medicine as needed.. and that makes this mama super nervous. :-\

We met with a geneticist a few months ago. He suggested genetic testing for all three of us. Joel had his testing first and the results came back showing a TSC1 mutation. The testing basically just confirms that Joel does have TS, but it will also help with our testing because now they know what to look for. Doctors have told us that people with the TSC1 mutation usually have a mild case of TS, which is good, but obviously everyone is different and they can't say for sure what Joel will experience as he gets older. So far Joel has been doing very well though, and we're all are very hopeful that it will continue this way.

{We are still waiting on the genetic testing results for Jeremy and I. We will hopefully find out soon. Whether we try to have another child in the future depends on those results..}

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