This morning we were up bright and early to head down to Riley Children’s Hospital for Lola’s first EEG in the United States. I had been to two EEG’s with Lola in Costa Rica, so I was interested to see how the two locations would differ.
Have you ever seen such a cute pilot before?
We were immediately called back and the nurse began to wrap Lola up like a little burrito in order to restrain her arms. Most of you that read this blog know very well Lola does not like any type of restraint (hugs included) therefore we knew it could go one way or the other. Either she would scream and protest or she would actually enjoy it given her early days of being swaddled. Luckily for all of us…Lola seemed to like it. OK – maybe I should say Lola tolerated it.
There were two nurses to assist with the test. One prepped Lola’s head for the electrodes while the other basically held Lola still. After the electrodes were attached, Lola’s head was wrapped up in a bandage and both Rob and I shared a glimpse of sadness. It’s not easy seeing your kid go through anything out of their comfort zone let alone medical tests, but we knew Lola was not in any pain. I was instructed to sit in a rocking chair and Lola was handed over to me so I could help to keep her relaxed. They dimmed the lights, turned on some music and while I’m sure they wished Lola would have went off to dreamland, she did nothing of the sort. But thankfully the test did not require Lola to sleep and I was happy to hear this. In Costa Rica, the EEG had to be performed while Lola was sleeping as that is when the seizure activity was more apt to take place. She had to be sedated twice in order to perform the test so I was relieved that this was not a requirement at Riley. If Dr. Patel thinks Lola needs a sleep EEG than she will be admitted to the hospital for a 24 EEG study. I hope and pray that today’s test is sufficient enough.
After 30 minutes the EEG was over and Lola did amazing! She didn’t cry or fuss in which this relieved the nurse as crying can alter the test. Lola was burning up from being swaddled so we quickly unwound her and the electrodes were taken off. Then we got to see the awesome post EEG Afro that Lola was sporting…
At this point the head neuro-nurse came in to tell us Lola’s blood work from last week looked good. She also explained there was some confusion with the reading of Lola’s Costa Rican MRI and we should know something later today. She said Dr. Patel would be calling next week to let us know if Lola showed any seizure activity on the EEG as well as if Lola would need the 24 hour EEG. We thanked her, grabbed the bath toys they offered as a “good job” gift and off we went.
I have to say that this EEG was much easier on me emotionally than the two Lola had prior. I think back to that time (April and June) and all of the crazy emotions I felt. I’ve been through a lot in my 30 short years, but those times were some of the hardest yet. All of the tests, the seizures, the medications, the Googling, the sleepless nights, the unknowns. Oh the unknowns were and still are the worst. But now the unknowns don’t seem to frighten me as much. Sure I am worried for my daughter and her future, but it doesn’t consume me like it used to. I think acceptance plays a big factor in this, but acceptance didn’t come easy. I still have a tinge of “why Lola” yet the thought leaves my mind as quickly as it enters. You know, spending time in a children’s hospital can quickly bitch slap some sense into you. There are kids that have it much worse than Lola and taking a walk through that hospital makes you remember it. My heart goes out to those children and especially to their parents, but at the same time I never want anyone to look at us or Lola and feel pity. We are all just navigating through life unknowingly, but we somehow manage to get through it. I saw this in a bathroom and felt drawn to the words. While many may interject their love lives in the words, I related with the heartbreak as well as the good that comes with life.
And seeing that my mother told me to post more pictures of Lola and not my own words (I can’t help it – I have been working too much to take pics…plus I secretly love writing!), I’ll leave you all with pictures from the rest of our post EEG afternoon.
And now the girl is doing something she rarely does these days…she is napping!
Have a good weekend everyone!