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...
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...
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...
Madison vs. the EEG
So I know I owe you guys all the details of our first family vayk, & I promise I’ll get to that, but in true Madison fashion this week has thrown us another unexpected curveball! Yesterday Maddie and I were excited to get back into our normal routine after returning home from vacation over the weekend. Before our day really began I touch based with her neuro team to update them on the status of the ketogenic diet process and to share some updates on her current seizure activity. When we met with the neurologist at CHOP on Halloween...
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...
Fat for Fuel: The Ketogenic Diet
This past Monday I attended a Ketogenic Diet Seminar at CHOP, which is required by the hospital in order to start the diet as a part of their program. The class was presented by the entire keto team including the director of the program (who we’re actually meeting with next week), nurses, dietitians, a social worker, chef, and even a mother of a child in the program. Why would we need to start the ketogenic diet for Madison? And what is this diet? While it’s becoming more mainstream and fad-like, it actually originated as a way to help those...
A Speech Epiphany
You guysssssss, I took Madison to a new facility for a speech evaluation yesterday and it was absolutely INCREDIBLE. Like one of the most helpful and positive appointments I’ve taken her to in a long time. If you read my post on relearning to eat, you know Madison had to work very hard post meningitis on getting her ability to suck back. We spent a lot of time in speech therapy, had a g tube, and eventually got her strong enough to eat orally again. We were discharged from speech early on because her therapist saw no issues with...