Thursday, March 27, 2008

overdue update...

man, I am bad at keeping this up to date...

Neurology definitley says epilepsy and they have upped Miles' dose of trileptal once again - from 1ml to 4ml since Christmas. He is doing well on it although he has had a few epidodes of puking from a deep sleep and then going right back to sleep and twitching. We are keeping an eye on this to make sure we don't need to increase it once again.

Cardiology said the seizures are not caused by his heart (yea!). However, the regurgitation in his pulmonary valve has gone from severe to worse and his fenestration isn't doing its job anymore so we are headed to the cath lab to close the hole. His surgery will be in July so we still have a while. His base pulse ox now is about 93% where it used to be 97% or higher. We are looking forward to having the hole closed. Strange right? looking forward to surgery? But it is pretty minor compared to some of the other options and what he has been through already. His conduit is slightly narrowed but not so much that they will need to do anything to it during the cath. Dr. Justino thinks the conduit will last another year - then we can stent it - then we won't need an open heart for a while! He thinks maybe 8yrs since his first one! That would be another 4 years! Sweet!

What else...Oh! Riley is a friggin GENIUS! He took the Stanford test and scored in the 99.9th percentile of ALL kindergarteners in the country...well all that take the Stanford. His average grade score is about 3rd grade! He won a reading comprehension deal at his school and will be going to the city competition in May. He also has passed all of his Accelerated Reader testing and will have his picture on the wall at school. This is a big deal because it is unheard of for a kindergartener to do this. Even first grade is a big deal. Guys - Riley is just so smart it is wild! The other day he was making this whine noise and I told him to stop. He said - but I like to make that noise. I again told him not to make it. He said - But it's my mouth. Oh man am I in for it with that additude :) (I welcome it freely! Bring it on mister!) I need to teach him not to be flippant to his mommy!

Tax Season is kicking my butt so I am off...

2 comments:

GoofyJ said...

So glad to have an update! :-) Sad about epilepsy, but yay that it is not triggered by the heart, and super yay about no open heart surgeries for another 4 years! Woohoo! That is wonderful :-)

That is awesome too about Riley - way to go!

Jennifer said...

Glad to see a Miles update! And that is so cool about Riley!! Thomas (my nephew) has that same attitude, sometimes it is hard to be stern with him because inside I am cracking up!

Hope the cath goes well, and I hope that things, personally, are going well for you.

I will keep you all in my thoughts.