Monday, May 21, 2012

Could be Better, Could be Worse

Will waiting to get sedated for his MRI
Will had his 6 month post surgery follow up testing on May 7th and 8th.  It was strange to walk into the front entrance of the Clinic again, since it had been so long.  When we were at the height of Will's treatments, we felt like we practically lived there.  We were full of uncertainty of what we were going to find out - a little nervous, and at the same time very happy to be there at a 6 month post surgery follow up appointment, seizure free!  This was something that we daydreamed about during all of the overnight 24 hour EEG stays in the someday have Will be seizure free and be going back to see everyone for a follow up and have them all tell us he's going to be fine...

We knew we wouldn't hear that he's doing just fine, since his development seems to be coming and going.  He has lost all of the words that he had, but at the same time he has made great strides in other areas of cognition, which has been very encouraging.  While at the Clinic for Will's follow up appointments, we quickly got a reminder of how fortunate we are that Will has not had any seizures since surgery.  When Will had his surgery back in November, we met a family from Ireland whose son was having his 3rd brain surgery, and the doctors were optimistic that things were looking good.  They had their six month follow up appointments at the same time as Will.  We found out that about a week after their family got back to Ireland, the seizures came back, and the doctors are now considering  a fourth (!!!!) brain surgery.  So, yeah-we are extremely fortunate to have Will in the condition that we have him in, and we can't forget that.

Will's neurosurgeon and neurologist were pleased with what they saw.  The neurosurgeon looked at the MRI that was taken on May 7th and told us that he was satisfied with the healing and that everything looked good.  When we expressed our concerns about Will's gain and then loss of speech after surgery, he took it seriously and we discussed it at length.  He eventually ended up saying that at this point he would have to defer to Will's neurologist.
Will giving his Grammy and Grandpa kisses

Will's neurologist was thrilled when we told her that he still has not had any seizures.  She said that Will's EEG is basically unchanged since February, which was as we expected. She said that in her opinion, while there is abnormal activity coming from the left parietal lobe on Will's EEG, the EEG pattern is not bad enough to cause seizures and therefore not bad enough to treat. Obviously, the fact that she feels his EEG is not too bad is a very good thing. He is not seizing, all of his blood and urine tests (for the first time EVER) were all completely normal. This was extremely good news.  However, she did say that she feels that he probably has some more cortical dysplasia (i.e., malformed brain tissue) in the left parietal lobe of his brain, and that is likely what is causing the developmental issues that we have seen, but that she would not do anything about it unless we see seizures. As parents this is somewhat frustrating, because we have a child that is seizure free (for now), but in the absence of seizures the Clinic is saying that they can't treat the developmental delays.  

We have decided to go back to Detroit for 2nd opinion to see if there is anything that he would recommend doing to try to further Will's development.  We will be going there for a 3 day hospital admission sometime in early July. Right now we feel like we got 1/2 of what we wanted - seizure freedom - but we so desperately want to see Will progress developmentally as well.  We have emailed Will's reports to our neurologist there, and he said that his philosphy is a bit different in that he believes in taking steps - including surgery - to treat development as well as seizures.

We are very happy and thankful that Will is not having seizures.  To think back on the beginning of last summer, it truly is amazing to consider all that he has been through-stuff that no kid should ever have to endure.  And to this day he is the happy, sweet, and affectionate little boy that he was during the darkest hours of last year.  We are looking forward to a fun summer with our boys, and although there is still a lot of uncertainty in the future, we feel much better about things than we did a year ago.  Things could be better, but they could be MUCH worse.