What To Do Next

I find there are times I do alright with all of this. Morgan's health issues, Kyle's needs and the Family's, and times that it is all-consuming, overwhelmingly stressful.

We had another appointment with Morgan's neurologist and the EEG confirms what I've been seeing. That Morgan's seizures have evolved from Infantile Spasms to tonic seizures. There is good and bad news with this. The good news is that Morgan's Hypsarrhythmia (chaotic brain wave pattern) seems to be gone. There are still some abnormality but he said that was typical for someone having seizures. It also opens up other drug treatment options. Though I certainly would have preferred one of the first two drugs we tried to stop the Infantile Spasms all-together. But since they didn't, it's nice to know that there are other options. But I found out that the drug the Neurologist wants to try first is VERY expensive. He warned me and I was thinking maybe we would need to budget for 100 to 150 dollars extra for her meds.

Oh, how far out of range I was. I went to the pharmacy to pick it up and felt my stomach drop to the floor when they said, "That's expensive. It's 571 dollars." 571 dollars! A month! Yeah. That's out of my reach. So these last couple days I've been on the phone with the insurance company, the pharmacy, and the Neurologist trying to see if there is a way to get our hands on this drug. I even called the manufacturer of the med. They generously gave me a savings card taking 50.00 off. While I was doing all this, Morgan had another cluster of seizures, one long tonic then 6 short spasms and all I kept thinking was HELP! If this is what she needs, why is it so unbelievably, outrageously expensive?

I'm still trying but so far no luck. There is a financial assistance application through the manufacturer and that is my next try. In the meantime, we may have to attempt something else. There are no guarantees that it would have worked anyway. It's all trial and error. That's the only way to find the right one for Morgan. So far the meds have been affordable through our insurance company. This one not-so-much. Stressful. I'm waiting to hear back from the neurologist to see what he says. Maybe they were able to pull some strings. I can only hope.

But today is a new day and so far, seizure free.

It's not all bad though. Morgan has changed in the last few weeks. She is more alert, more responsive and making really good progress. I don't know how long her Hypsarrhythmia has been going on but I do know that she is very present with it gone. This haunts me a little. I don't know how much time we lost for her development. I don't know what the lasting effects of the Infantile Spasms and now the seizures will have on her. This haunts me. Yes, Morgan and Hope will forever go hand-in-hand. Without Hope, all this would be too much.