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...
She missed us!
Saturday night John and I had a wedding for two very close friends. We were really looking forward to it. Honestly, what parents don’t look forward to a night out? A few drinks, dancing, catching up with friends, and real talk and alone time for a few hours. Yes please! Leaving Madison however is something we don’t do often. We’ve never left her overnight and I’m not sure when we’ll ever feel comfortable enough to do that. So even though the wedding was 2.5 hours away, we decided to drive back afterwards. Even leaving Madison for just a few...
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...
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...
Praying for Poop
What.A.Week. Actually, if I’m being honest these last two weeks were something else. If you’ve been following along you know we had an intensive therapy week blocked out for Madison 2 weeks ago already that got all messed up due to teething pain. Welp, turns out it wasn’t just teething that was bothering Maddie girl. Her tooth had cut by the weekend but she was still crying in agony ALL day and night. The way she was arching her body indicated to me it was stomach related, but of course you never know with her! Also, unfortunate timing, but...