Journeys often have restarts or course corrections or
direction changes, but they are still part of the same journey. Some are good
and work out for the best, some are bad, but still work out for the good, and
others are just plain bad. The bad ones you try to avoid but you just can’t.
Back in March, I wrote about Grant’s seizures returning and
the 3 day video EEG Grant had and his diagnosis of Lennox Gastaut Syndrome.
This turn was bad all around. The general prognosis for LGS is not good. While
Grant has shown some progress in his development, it was still very slow. Rylea
and I were not in a very good place mentally or emotionally for a few days
after the diagnosis.
Grant’s new doctor placed him on a drug called ONFI. This
drug is relatively new in the US but has been in use in Europe for over 30
years. After an adjustment period (which are always difficult for Grant), Grant
was on the full dose of ONFI. Shortly after that, his seizures stopped. Rylea and
I were cautiously optimistic, since we saw this with the Depakote and the
seizures returned.
Grant had a follow-up EEG about week ago, and today Rylea
and I received the results. The ONFI is working and working very well. The Dr.
showed us his before and after EEGs and they were night and day. The doctor
explained to us that is EEG now is practically normal. No seizure or
seizure-like activity at all. This was
the best news concerning Grant Rylea and I have received in a very long time.
This is wonderful news, but the seizures are only part of
Grant’s difficulties. As I have explained before, the timing of his seizures
beginning was most likely the worst for anyone. They made it difficult if not impossible
for him to learn especially during a crucial time. The seizures have delayed
his cognitive development immensely.
Grant has been in speech and occupational therapy for about
9 months. Grant was afforded these therapists through the Babies Can’t Wait
program with the State of Georgia. They provide services for developmentally
delayed children throughout the state until the child is 3 years old. After 3, the
school system provides the therapy needed. Grant turned 3 a little over 3 weeks
ago and won’t start school until August. Luckily, our insurance will cover the
continuing therapy visits until then.
Shortly prior to his third birthday, the therapists did an
assessment of Grant. Cognitively, Grant is about 11 to 12 months old. He has a long way to go, but since the
seizures have stopped we have seen good progress. He is learning more complex
things and making more complicated connections. The Dr told us this is a
perfect time to really start pushing him to learn more things.
Thank you all for all the support we have received. It has
meant so much. Cole runs to the mailbox everyday looking for a letter and the
contributions made have helped greatly. We still need all the support we can
get. If you want to send a Cole a letter or a package, please send me an email
and I will give you our address (his birthday is July 26th wink wink
nudge nudge). If you want to donate to the account (no matter how little, skip
Starbucks for a day) click here.
Again, thank you all for the love and support and hopefully
the good news will continue to come.
