Fall officially starts next week, and for a girl who has always been all about summer, I’m strangely really looking forward to some cooler temps and a slower pace around here. Once cold and flu season is upon us, I typically schedule less appointments for Madison and don’t take her out quite as much since she’s so high risk. This summer has been pretty overwhelming, sometimes in a good way, sometimes not. But I’ve realized I haven’t shared a real update on Miss M in a while since we’ve been so busy! And what better way than to do...
A Happy Maddie
Alert. Clear. Vocal. HAPPY. These are a few of the words I would use to describe Madison lately, and it’s been wonderful! What’s changed? Well not much, aside from starting a new CBD and weaning one of her seizure meds a few months ago. We’ve also finally figured out a good combo for keeping her constipation under control, and her teething spell has just about ended. Okay, so maybe a few things have changed! Regardless, she’s been a new child lately and John and I have been soaking in every minute. One of the worst things about epilepsy, is...
OBX 2019
Vacationing with a special needs child can really be hit or miss. Madison’s stability varies and unfortunately when you book a trip there’s no way to know if she’ll be having a good week or a bad one by the time that trip rolls around. We traveled to Florida in November and while it was relaxing to soak up the warm weather, Madison wound up having awful nights almost everyday. She barely slept, had seizures, and seemed uncomfortable a lot during the trip, which made things hard for John and I. We booked a beach house in OBX knowing...
Vision Therapy
So you may have seen me share the below video of Maddie girl using the switch pad earlier in the week (sorry not sorry I keep posting about it!), but she illustrated some awesome new brain connections to us in her therapy session last week! She’s still been teething and quite frankly, pretty moody, so when we went to speech on Monday I wasn’t sure how the session would go. She wasn’t too interested in eating, but because her therapist is awesome, she suggested we work on vision since Madison was awake. Madison has CVI, which is a brain...
Surviving Maddie’s 1st Cold
Happy December! I can’t believe it’s already December. This year has gone by so fast! Although I probably say that every year.. We’ve been so busy recently between various doctor appointments & therapies & Thanksgiving! And to top it all off, Madison wound up developing her very first cold. We really lucked out last year with her not getting sick at all. Last winter she was on a steroid seizure medication that pretty much wipes your immune system, so we never took her out, like ever. We had no one over. And the few people that were allowed had...
Happy Halloween!
So we have had a crazy busy two weeks my friends! It’s been nonstop with various therapies and doctor appointments. I used to be someone who was so organized and on time, and now I never know what time we have anything #momlife lol. So I thought I’d pop in and update everyone on all of the craziness! Early Intervention Last week Madison had her yearly re-evaluation for her Early Intervention services. A developmental specialist came to meet with Maddie and tested her on various motor and social skills. In true Maddie form she slept through the session, so...
Meet Madison: The Nap Queen of New Jersey
Although Madison hasn’t been diagnosed with anything specific regarding sleep issues, this has been one of our biggest struggles with her post meningitis. While most parents find themselves googling for ways to get their child to sleep, I suffer from the opposite problem with Maddie; she sleeps far too often (during the day).. somehow at night she always seems to decide to wake up, just like all kiddos lol. When we were transferred to CSH for therapy last year after our stay in the PICU, Madison often slept through her therapy sessions. It was a really difficult month. John...