2018 in Review

I’ve been racking my brain trying to determine how to write this post. How to reflect on a year that has in all honesty, been incredibly hard on our family. How to really sort all of the bad from good and heartbreak from hope. I want to start the new year on a good note, which is hard to do when the end of this year has been particularly painful for us. So I’m gonna start with the not so great moments in the hopes that if I save the better moments for the end, those will be what...

Keto Update

If you’ve been following along you know we were hoping to start Madison on the ketogenic diet as a means to relieve her seizures. The diet has a good success rate, especially for the type of seizures Madison has, and when effective can allow for a reduction or removal of medications. I attended a seminar all about the diet, it’s risks, the process, efficacy rate, etc at CHOP back in October. Read more on that here. It was super informative and we hoped to get Madison admitted in January or February if the team felt she was a good...

Holiday Gift Guide

Dear Santa, What do you get a child with special needs? A child that might be immobile, have vision or hearing issues, epilepsy, developmental delays, and physical hardships? The answer is not a one size fits all, and can be equally as hard for parents to think of things to engage their child, as it is for friends and family members who know even less about what that child may really need. So in the spirit of the holidays, I’ve put together a list of some items that might work for the special needs child in your life! Although...

Making Memories

When you have a special needs child, most of your time revolves around therapies, doctor appointments, phone calls, specialists, and pharmacy runs. It can be quite draining and unfortunately leaves so little time to actually just BE with your child and enjoy them. It’s super important to constantly stimulate and work with your child when they need that for their development, but it’s also equally as important to give yourself “normal” moments to play and snuggle and relax with them too. There’s even an extra sense of that hustle and bustle during the holidays, but enjoying the season and...

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...