A few days ago, with Zane’s 2nd birthday nearing, I started feeling the need to print some of our pictures to put in Zane’s baby book. Looking through all those memories triggered a letter to our neurologist, and I thought I would share it here as well.
Dr. Von Allmen,
Tomorrow, Zane turns two. I can’t even believe it. Two! Our daughter is ten, so I know how fast time flies. But, it’s different this time. As I try to put pictures in his baby book, I feel so much sadness. Not only has time flown by, but this time we were robbed of so many precious memories. We missed out on so many smiles, so many giggles, so many splashes in the tub. We missed out on spaghetti sauce faces and dropped toys just to see how gravity worked. Instead of cute videos of silly moments, we have videos of seizures for documentation. Instead of pictures of new milestones, we have pictures of EEG’s in the hospital. We missed out on so many silly little things that most parents take for granted.
When he should have been gaining new milestones each day, we watched the milestones he had already achieved fade until he had none. None. At eight months old, he was like a newborn. But, his body had grown, so taking him up and down the stairs or giving him a bath was like holding a twenty-pound limp noodle. Our sweet baby boy, once healthy and thriving, could not even hold up his own head. He was expressionless, and nearly motionless, except for spasm after spasm. He was gone. Our son was gone.
After having several experiences with different teams of neurologists (no less than 6), plus countless residents, at a well known hospital, you would think that someone would have gotten the diagnosis correct. Or, at the very least, that one of them would have scheduled a longer EEG. You would think that one of them would have listened to us about how the seizures were changing. You would think that one of them would have watched our short video clip. But up until then, we weren’t so lucky.
But, then we found you. You didn’t even know us yet, but you took a quick moment to watch a video clip that had been emailed to a nurse’s phone and handed to you by a resident. (Our first neurologist wouldn’t even watch the video during our scheduled appointment). You had us in within two days for Zane’s first 23-hour EEG. Sadly, it all confirmed my fear that it was, in fact, Infantile Spasms. But, you moved quickly to get us in, get it diagnosed and start an appropriate treatment. Zane’s path wasn’t an easy one, but thankfully, we found our miracle. (I never would have thought I could have been so happy to give my own infant shots in the leg each day for months, at thousands of dollars each. But, once it started to work, I was)!
Within a few weeks, we started to see his smile come back, then his giggle. We started to see milestones he had lost return. Then we saw new ones. Now we have have cute videos of laughter and pictures of that spaghetti stained face. With lots of therapy, we helped him learn to crawl, learn to eat, and learn to walk. Now he’s jumping, dancing climbing and nearly running. He is becoming quite the toddler, testing limits with a smirk on his face and a twinkle in his eye.
I know from online forums that many babies with I.S. don’t have the same outcome. So, I do know that some part of this may be luck. Yes, Zane is lucky. But, part of his luck was finding you to be his neurologist.
So, from the bottom of my heart, I thank you. Thank you for listening to us, thank you for being kind and most of all, thank you for helping our son. He would not be where he is today without you and your wonderful team.
With much appreciation,