Thursday, March 12, 2015

Adventures In Getting Dressed

Kyle is my never ending source of entertainment. Now that he is dressing himself, there is always some surprise for me during the day. He got dressed one morning and we left to run errands for a few hours. When we got home he dashed to use the bathroom. When I passed by, I saw he wasn't wearing any underwear. "Where's your underwear little man?" He said, "No underwear today!" He had been going commando the whole time. The next day I laid out jeans for him and he must not have liked what I picked out because when he appeared, he was wearing something else. When I finally went into his room, every single pair of pants he owned was sprawled out across the floor, dresser and bed. He had tried on each one until he found something he liked. Sometimes, he will change what he's wearing in the middle of the day.

And then there are the Superman pajamas. I have a firm and fast rule that he is NOT allowed to wear this out of the house. It's a good thing to, because the moment we are home, he puts them on over his clothes. He wears them all the time, not matter what. He objects to the frequent washings and is on my case till they come out of the drier. He soars around the house making sounds of battle while fighting off the bad guys.

The other day, when Morgan was having a seizure, he asked what was wrong with Morgan. "She's having a seizure baby." He thinks about this for a moment and says, "Maybe Superman could help. He's not a doctor, but he's a superhero!" "That would be nice if he could." He kisses Morgan on the check and runs off to fight more bad guys.

If I insist on him wearing something of my choosing, and he doesn't want to, it can be quite the standoff.

Today, Kyle came out wearing shorts, sweatshirt, and the Superman pajama top over the sweatshirt. I wonder what he will decide to wear in a few hours?

Thursday, March 5, 2015

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.