Feeling Thankful

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,
Holly Guillaume

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Blessed

Last week, my husband and 10-year-old daughter were both sick with a head cold and cough.  This week, Zane and I got it.  Zane was a little warm yesterday, so we alternated ibuprofen and acetaminophen, which seemed to do the trick.  Normally, we don’t even treat a mild fever, because we’re believers in the way your body is designed to fight off a cold with a fever.  If you treat the fever, then you take away your body’s ability to fight.  But, with Zane, it’s different.  Fever can itself cause seizures in some people, called febrile seizures.  While febrile seizures are not related to epilepsy, I certainly don’t want to take the chance that one would re-trigger the I.S.  I’m not sure if that would or could happen.  Probably not, though I don’t think anyone can say that definitively.  But, I don’t want to chance it.  So, for him, we treat even mild fever.

Last night he got a dose of medicine before his bed time.  I intentionally stayed up until midnight to make sure he got another dose.  Getting woken up in the middle of the night and having medicine squirted into his mouth did not go over very well.  But, I felt better knowing he got a night-time dose.  Then I put myself to bed, after giving myself another dose.  This morning, when my husband got up to go to work at 5:30, I asked if he would check on Zane, which he did.  He brought him to my bed and laid him down.  Still groggy, I reached over to touch him and he was burning up.  Boy, if that doesn’t wake a mom up fast, I don’t know what will!  I immediately gave him another dose of medicine and started trying to cool him with a washcloth.  Again, that did not go over well.  You know how when you have a fever, you actually feel cold, like you can’t get enough blankets on.  Well, that’s how he was.  His little knees were shaking and his teeth were chattering, like he had just gotten out of a polar bear plunge.  Poor little guy.  His under-arm temperature was 102.3, which is equivalent to 103.3 oral.  That’s a scary range for any mom, but especially to a mom of a little one with epilepsy.  I kept trying to cool him off, but an hour later, the fever had barely gone down, so I alternated medicines and gave him another dose.  Thirty minutes later, it still hadn’t come down.  So, I got my daughter out of bed early, and jumped in the car.  I knew we were going to be right smack dab in the middle of rush hour, and we’re about 35 miles away, which could easily be an hour and a half at rush hour.  I decided to just start driving then, instead of waiting any longer and getting stuck in even more traffic.

Then, at a stop light, hanging my head low in shame, I texted our pediatrician.  We had an 11:00 appointment already scheduled.  But, when you have a feverish little one, that seems like forever.  When my daughter was little, I would have made due and waited until the appointment, and everything would have been fine.  Things probably would have been fine today too, but I was scared.

This is where the title of my post comes in.  “Blessed”.  Yes, we have been blessed in finding the most incredible people during Zane’s journey.  Seriously, INCREDIBLE people.

Dr. Kelly Olson (of Bootin and Savrick Pediatricks) is simply amazing.  Yes, I could have gone to urgent care or even the E.R., but then I would have had to explain Zane’s condition, and I guarantee I still would have gotten an eye roll or two.  Many doctors aren’t familiar with Infantile Spasms and just how scary it is, and we’ve found a lot of doctors are too arrogant to actually listen to a parent and their concerns.  But, once in a while you find doctors like Dr. Olson, who go above and beyond the call of duty.  Dr. Olson met us at the office before it even opened.  Seriously, before it opened.  The main lobby was closed, the lights were out, there were no office staff and just one nurse.  But, she got us in, got him checked out and gave him a prescription.  She even gave my daughter a quick look to make sure she was doing well since she had been sick last week.  What doctor does that?  Not many.  But ours did.  She is truly a special person and I am so incredibly thankful!

Thank you Dr. Olson!  You’re the best!

Besides being blessed with incredible doctors, I’m also feeling blessed that the high fever has not caused Zane any more trouble than any other toddler.  For over a year now, fever has been my biggest worry.  He held it off pretty well, but I knew it would eventually rear it’s ugly head.  Today was that day.  But, it’s down now and he has started on antibiotics.  Phew.  Now I can breath a sigh of relief!  Hopefully he’ll be feeling better by tomorrow, which is his 2nd birthday!  🙂