Cutie Patubie

It’s Feeding Tube Awareness Week, and how fitting, because our brave girl will be getting her g-tube on Friday. What’s a g-tube? A g-tube or gastrostomy tube is a feeding tube placed in the abdomen to deliver nutrition directly to the stomach. There are lots of conditions that might cause someone to need a feeding tube either temporarily or permanently, including: cardiovascular, developmental, endocrin, genetic, GI, immune, neurological, metabolic, swallowing, respiratory, and structural. In the medical world a feeding tube is low on the list of scary interventions. Madison has been fed by an NG tube many times. We...

Pregnancy After Special Needs

One of the very first things John and I talked about after Madison got sick was the future of our family. We had always planned on having 3 or 4 kids, but as we sat in the hospital room watching our 11 day old babygirl fight for her life, we knew our entire future had just changed. How did Madison get sick? Could this happen again? Will we be able to handle another child or children with so much unknown ahead of us? We didn’t know the answers to those questions then, and we still don’t know the answers...

Don’t Forget About Us

For the past 2+ months most of the world has gotten a small taste of what it’s like to be a medically complex family. Everyone has felt the fear of germs, stayed in the confines of their home when they’d rather be out and about, been considerate of those with underlying health issues, and began being more conscious about the spread of germs. But now that the world is slowly beginning to open up again, will all of you remember this? It is my fear and the fear of most special needs families that you won’t. I’ve seen so...

Always Worth It

If you follow me on Instagram then you know I spent last week in Maine for a little fall family getaway! We had this trip planned for months, and almost cancelled it countless times because so many things have been popping up, but ultimately decided we deserved some time away together. While we were away I decided I wanted to share a blog post about the importance of making memories when you have a medically complex child, but as our trip ended with a tough day and then a TON of traffic leading to a huge seizure filled meltdown...

Hospital Hell

It’s hard to believe an entire week has already come and gone. One minute we were in Rhode Island on a mini vacation, and the next we’re in the hospital. I lose all sense of time when we’re in the hospital with Madison. Sitting in the same chair EVERY SINGLE DAY is hard. Sleeping in a windowsill is hard. Trying to comfort your child while they’re hooked up to multiple machines is hard. It’s just all around hard, and the days sort of just blur together. The first few days of a hospital admittance tend to be the scariest...

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...

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...