Just when I was starting to get into my groove on Wednesday’s, I have already had to change up my beloved schedule. While I normally work on Mondays, I took the day off so I could be at Lola’s neurologist appointment with Dr. Zimmer. I have finally come to terms that I am indeed the crazy mother who must attend every single neurologist appointment…they mean that much to me. And while I sincerely trust my husbands ability to tell me “word for word” what Dr. Zimmer said, I just know that my worried mind rests much easier when I hear the words myself. But come on…it’s not like it is just any appointment. It’s not to check out a diaper rash, it’s not a therapy session and it’s not a cranial sacral appointment because let me say I have missed plenty of those due to work. It’s an appointment about my kids brain. So while I was slightly jealous of Rob’s Wednesday with Lola (a day that is loaded with a social group, cranial sacral therapy, speech therapy and my favorite…two hours of uninterrupted alone time), I am much happier to be able to personally share Lola’s neuro appointment with all of you.
Monday was essentially just a check-up (I still couldn’t not go and yes – I suppose you could call me a bit neurotic). Dr. Zimmer has the calmest demeanor even though I can see the wheels turning in her head trying to figure Lola out. You kind of want to just ask “what are you thinking right at this very moment?”, but she is so thorough she is bound to cover most questions we could even think up. She told us things we already knew like that all of Lola’s urine analysis, blood work and initial genetic testing all came back normal. She saw that we weren’t able to get Lola in with the neurogeneticist until next January so she suggested another panel of genetic labs to submit Lola’s blood for. The lab is in Chicago and it is highly regarded. If we don’t get a diagnosis from this round of genetic testing, the doctors in Chicago will bank Lola’s blood as well as document Lola’s symptoms in hopes of eventually finding another sample like Lola’s. The results will take another four to six weeks, but it is better than simply waiting until January to look for answers.
Dr. Zimmer also suggested that Lola take part in a 24 hour EEG to monitor her brain waves in her natural state of sleep. Dr. Zimmmer isn’t necessarily expecting to see abnormal seizure activity, but she wants to see if there are any spikes that would lead her to believe that seizures could be an issue without Lola’s anti-seizure medication. The poor babe will have to have a sort of cap on her head with tiny electrodes for 24 full hours. We will have to make the hospital our home for that time and do whatever we can to entertain Miss Lola as she isn’t too fond of things on her head. But like with anything, Lola is quite good at adapting so I know she’ll handle this next challenge like the big girl she is.
We were given the go ahead for vaccinations, but Rob and I are both leery at this particular time. We decided to wait until after the 24 hour EEG to make a decision about moving forward with vaccinations.
The best part about the appointment was seeing the smile on Dr. Zimmer’s face when she saw Lola clapping when we said “Yeah” or when Lola crawled to me when Dr. Zimmer told her to crawl to “Mommy”. She was thrilled to see how much Lola’s vision has improved and commented about how “remarkable” it was that Lola tracked items almost effortlessly. She was happy to hear about Lola pulling to stand and Lola even showed off her new ability to wave as Dr. Zimmer said goodbye. She was very pleased with Lola’s progress and I would take any day off just to see the hopeful smile my kid brought to her neurologist. It was truly amazing.
I have lots to share, so I’ll be back soon with another post. Until then, I will leave you with what you were all quickly scrolling down in search of…a few pictures of the girl herself.
And this is what she was up to tonight…
She may break her ankles in doing so, but damn is sister determined to stand up!