It’s official, Madison is officially registered with the NJ Medicinal Marijuana Program! We got her card in the mail last night and could not be more excited to start this journey with her in the hopes that medicinal marijuana helps her find seizure freedom. Because marijuana is not legal in New Jersey there’s quite a process in becoming a part of the Medical Marijuana Program or MMP. For one, you must suffer from an approved debilitating condition. In NJ these include: Amyotrophic lateral sclerosis Anxiety Chronic pain related to musculoskeletal disorders Chronic pain of visceral origin Migraine Multiple sclerosis...
The Domino Effect
Epilepsy sucks. Diabetes Insipidus sucks. Hypopituitarism sucks. All of these conditions are difficult to mange on their own, but put them all together and the complexities can be overwhelming. With so many systems out of whack, a tiny change in one can greatly affect the others. Whenever something is “off” with Madison there’s never an easy answer as to why. We always have to look at the whole picture and it can make things quite challenging to say the least. So far, we’ve been pretty lucky in her care with most of her systems running smoothly and levels stable....
Let Her Eat Cake!
Madison ate CAKE! I repeat, CAKE! Today Madison surprised us all and rocked her first real attempt at eating table food! She has been so moody and temperamental lately from teething, I never know how her therapy sessions are going to go. This afternoon at speech she started off pretty cranky, but once she got a taste of that sweet Entenmann’s funfetti cake, her mood perked right up! Since Madison’s success with using the light aide in speech (read more on that here), we’ve attempted to move her lessons into the CVI room. This room is painted black and...
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...
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...
Thankful in all Circumstances
“I don’t want to carry gratitude in seasons. I want to carry it in my bones. I want it to rest on my tongue like it is a language that I never stop speaking.” Happy Thanksgiving! I saw this quote the other night and it really resonated with me. Yes, Thanksgiving is a wonderful time to celebrate all of the blessings in your life, and yes we all know we are of course just as thankful throughout the remainder of the year, but do we really focus on that gratitude outside of the holiday season? A lot of us...