The past couple weeks have been spent with two little kids kicking a cold. It was a lot of coughing, sneezing, boogers, rashes, fevers, baby Tylenol, and more boogers. Hopefully, we’re at the tail end of this nasty bug and it could be a little less gross around here and a lot less stressful.
With Will, a cold is no big deal. He’s easy and thankfully so. Generally, a few doses of acetaminophen, juice, and The Wiggles equals a cure for the kid cold. When Paige gets sick, that’s a different story. Luckily, she really hasn’t had an illness since she’s been born. She might have had a sniffle when she was a newborn but I don’t really count that. Unfortunately, she also caught whatever was going around and I’d be lying if I said that we weren’t worried about it.
A huge concern for Liss babies is respiratory infections, aspiration, and choking. If Paige has even the slightest rattling in her lungs we were advised to take her straight to the hospital. To add to the list of frets, a fever can also bring on seizures which we are trying to avoid for as long as possible. Well, she did get the stuffy nose which led to choking, a cough that led to throwing up, and a lot of sleepless nights, and the dreaded fever. So, instead of juice and a DVD we camped out on the couch with a humidifier, baby Tylenol and Motrin, an inclined bassinet, saline, nasal aspirator, a cup for chest PT, and a few doctor visits to check her lungs (which were CLEAR, by the way!! ). As of today, I think we are seeing a light at the end of the tunnel and we’re looking forward to a healthier household.
I have to say, Paige handled this past week like a champ! She’s a tough little thing and I’m proud of her. Aaaaand we also got another small bit of good news yesterday…
ANOTHER GOOD EEG!
As I previously said, I wasn’t sure about seizure activity because of her fevers and wonky behavior from being sick. To be completely honest, Andrew and I didn’t have a great feeling about this follow-up. I spoke before about possibly putting Paige on a preventative seizure med and we kind of thought that our decision probably would be made for us after her illness.
Let me just say, I hate EEG’s. The process isn’t actually that long, but it’s a process, nonetheless, and I find it to be pretty tedious. For children under a year old, you are supposed to keep them up a few hours later than their bed time and wake them up (and keep them up) a little earlier than usual. Considering Paige doesn’t have a real bed time or wake up, time this really doesn’t bother me. It’s mostly just the applying of the buttons to her head. First, they swaddle the baby and strap her on the bed. Then, the technician (I don’t know the proper name) measures and marks her head to help show where the buttons will be placed. The buttons are secured, one by one, with gauze dipped in a solution and then applied all around her head and one on her chest. An air brush tool is used to dry the solution to make sure they stay in place and don’t move at all. Once they are dried, a conducting lotion is injected into the buttons and the EEG is set to start. This process didn’t hurt Paige and it only took maaayyybe a half an hour but it was uncomfortable and she wailed almost the whole time.
Once the EEG starts the technician does a series of tests to see how Paige’s brain reacts to them. The first test was simple and easy. He placed his thumbs over Paige’s eyes and held them shut for ten seconds for a total of 4 times. The second test was the dreaded light test. I’m actually getting used to it but I still hate it. A bright light is placed about 4 inches from her face and it flashes for about ten seconds at a time. This is repeated about 10 times with a goal to induce a seizure. And finally, after all of the tests, the babies are encouraged to sleep! The whole reason why we had to keep her up. Sleep is encouraged because there are very distinct brain patterns for the different stages of sleep and actually gets the best reading of seizure activity. Luckily, Paige zonked right out and slept for most of the hour.
We had an appointment directly after her EEG with the Neurologist and Epileptologist to find out her results. I have to say, I’m very pleased with the team of doctors in Pittsburgh! So far, they have been extremely respectful of my decisions, answered all of my questions without being condescending, and have been very playful with Paige, which I really appreciate. After her quick checkup, I was told that Paige’s EEG looks really good and still advise to hold off on medication.
While I gave a big fist pump in the air, I did have questions. I was honest and just came out with it:
I’m afraid of seizures. I am! I honestly don’t know how I’m going to react when they happen.
What are we going to do when they happen?!
Well, the answer to this is, we’ll just deal with it. They won’t be as scary as I envision in my head. The doctor did something that was probably out of the norm but helped me a lot. He acted out the different types of seizures to look out for. Even though he seemed a little embarrassed, he eased my mind more than he could ever know. Some were just dropping of the head. Some were stiff arms and twitches. Others included a limp side of the face with drool. He informed me that she would make them known and I could call him at any time with questions. Since Paige is obviously happy and playful, he assured me that this was a good sign she was not having any seizures.
But can’t I just put her on meds to prevent them?!
The answer is, I can do whatever I feel comfortable with, however, they still advise against it. I had every intention of leaving that appointment with a prescription but feel a lot more comfortable with their reasoning. The reason is because she’s not having them, they won’t really know what they’re treating. There’s many different types of seizures and different cocktails that could be made specifically for what is going on. Seizure medication also has side effects and they aren’t always pleasant. The early years are extremely pivotal for development and the longer we can go without them, the better. Since she is making strides in her development and there is a 100% chance of seizures happening in her future, we’re basically just biding as much time as possible. Andrew and I have made the decision that if we had the choice of quality of life and quantity, we’d choose quality first – and I feel like this is what we’re doing.
As far as what to do with her, we are to continue with therapies and keep her healthy. This past week has been trying, but we made it through. And now, I need a drink!