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...
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...
Engaging a Special Needs Child
Buying toys for most kids is easy and fun. What are they interested in? How old are they? What milestones have they met or are they close to meeting in which a particular toy might engage them further? While all valid questions, most of these don’t matter for Madison. Because she is so globally delayed, and her brain functions far differently, when it comes to buying toys for her, we need to be strategic. Each toy is an opportunity for therapy, a chance to build new neuron connections, and to ultimately help her reach her fullest potential. She doesn’t...
Alternative Therapy: The Anat Baniel Method
Today we start a week-long intensive therapy program for Madison! I’m so excited to see how she handle’s it and if it makes a difference in her body awareness. One of Madison’s biggest struggles from her brain injury is her brain’s ability to recognize and move her own body. We all know the brain controls everything, but it literally controls everything. Imagine not being able to move your arms or legs? For Madison, something this simple takes a lot of work. Her brain has to realize, what her legs are, where they are, what they do, how to move...
CBD Oil
The running joke in our house has become that our baby girl has used cannabis before the age of 1, whereas my husband and I never have lol. CBD Oil. What is it? How does it work? Is it legal? Being that I am not well versed, like by any means, in the cannabis industry, I had never even heard of CBD. But, when Madison was diagnosed with Infantile Spasms, and nothing was working, I started doing my research on what other forms of treatment were available. CBD came highly recommended by many mama’s of epileptic children who were...