Waking up to the sounds of your baby screaming out in pain is an awful way to wake up. Even more so when you recognize his very distinct cry, that only means one thing....seizure. When you rush out of bed to grab him and hold him until it passes and wish with each spasm that you could somehow transfer all the seizures out of his body into yours, you realize that life just isn't fair. I had no idea how helpless I would feel as a mom to not be able to fix my child. A kiss on a skinned knee, some ice for a bloody nose, a joke to cheer up a grumpy mood, a piggy back ride when they're tired of walking. I can do those things. I can fix it. I can't fix this. Despite my phone calls to try and increase his medicine, add a medicine, something, anything. Despite my research into alternative therapies. Digging and searching for the magic potion to make this all better. Knowing that Oliver will face a lifetime of seizures and other health complications overwhelms me like an 800 lb weight on my head. He is only 7 months old, he never even got a shot at a normal life and with each seizure I am reminded just how much we have left to battle against. It is far easier to take it day by day when those days are seizure free. I have cried more tears in the past 2 months since his initial diagnosis of Infantile Spasms than I ever have in my 29 years of life prior to that day. Have we really been battling this for 2 months now? It seems like such a short and long amount of time all at once.
One bright point in my day is the following email I received from Aetna this morning, looks like we're heading to Minnesota:
At this time, Marc Patterson, and the Mayo Clinic, both
participate in your Aetna health plan.
You are not required to obtain preauthorization.
Off to Minnesota! You betcha. I am so glad this part was not a painstaking fight. You deserve a break. Let me know if you need anything during your trip.
ReplyDeleteJust wanted to say "hi". I saw some of your posts on the IS forum. I haven't been there in a couple of months (it wasn't working for me for a while), so I missed you at first.
ReplyDeleteMy 16-month-old daughter Ella has I.S. and a brain malformation. She has been spasm-free for almost 11 months, after a course of ACTH, and she has been making great developmental progress recently.
I just wanted to reach out to you and wish you the best as you seek a second opinion and look for Oliver's miracle.