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...
My Child is Disabled
My child is disabled. She’s only two years old, and she’s severely disabled. I can’t express into words how hard it is to say that sentence. When we had Madison’s first MRI done post meningitis and saw the damage that awful disease did to her brain, we knew then and there she would never live a normal life. It’s some of the worst news you can receive as a parent. The brand new baby you had prayed for your whole life; the baby that passed every test in the book during pregnancy; the baby that was born healthy; is...
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...
The Truth About Mother’s Day
Mother’s Day is just around the corner. A day to celebrate the strength and love of all the moms and mom figures in our life. A day that is truly special for many. But what about for those that have lost their mother? Those estranged from their mothers? Those longing to be a mother? And those, like me, who’s journey into motherhood hasn’t been like what they had hoped or dreamed of. For us, this day can stir up a wide range of emotions and be extremely difficult. Last year was my first Mother’s Day with Madison, and it...
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....
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...
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...
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...
Our Life Forever Changed
Hi! Kelly here. Wife. Mama. Jersey Girl. Where do I begin? How do I kick this thing off? I thought of doing some research on starting a blog and what your first blog post should be about so that I could start this new adventure off right. You see, I’m the kind of person that researches EVERYTHING before doing ANYTHING (like never been to a restaurant without having looked up the menu first kind of person), but if there’s one thing I learned this past year it’s that no matter how much I research and plan something, at the...