piper lynn

i’m writing this as i sit at cincinnati children’s hospital, watching our sweet little ducky sleep with 27 electrodes attached to her head…a scene i’ll be looking at until tomorrow morning while the team tries to rule out seizure activity. let’s back up a bit.

about 3 months ago, i started noticing piper complaining that she was dizzy as she stumbled around when she got out of bed. it looked like someone had spun her around 30x and set her on the ground to fend for herself. she’d stumble, run into the wall/door/bookshelf, fall down and cling to the nearest adult until it passed. these episodes lasted typically between 15 seconds to a couple of minutes, but i started noticing them daily. i’ll be honest, i wasn’t paying a whole lot of attention because she was pretty clumsy and let’s be honest, she’s 2. but then it started happening every day. at first i thought they were only happening in the morning or positionally but as time has gone on, they seem to appear more sporadically, even coming on mid run.

a call to our pediatrician {thank God for this man} started the ball rolling and shortly after that, a 2.5 hour ‘episode’ sent us into high gear…and it scared the living day lights out of me. it was the beginning of all the testing, imagine, poking + prodding and let me tell you, this tough girl has been through it all.
MRI + CT of brain, EKG, EEG, vestibular testing, blood panels, hearing test
…neurology, cardiology, ENT… and i still feel like i’m missing some. it feels like we’ve been living at the hospital and in appointments, my heart just aches for her.

the CT was first to rule out a tumor or a big bleed. i had called our pediatrician on a saturday, fairly panicked, and they had us in for the CT first thing monday morning with a full blood panel to basically check for everything.
everything came back negative. thank god.

then to the neugologist.. i was really frustrated after this appointment, mainly because i felt like he thought i was making stuff up. he barely listened to anything i said and seemed more concerned about her foot anatomy than anything…which yes, has problems..but we have a whole other team for that..and that wasn’t why we were there. the one thing we did get out of that appointment is that he ordered an MRI of her brain to get a clearer picture of what everything looked like.

then the cardiologist. a full workup… mainly being concerned about complications related to ehlers-danlos syndrome.
again, negative. thank god.

then she had the MRI, which did show an old bleed/stroke which confirmed the cerebral palsy. i took it harder than what i anticipated since really it wasn’t new information, but it still didn’t answer any of our questions related to these dizzy spells.

then to the ENT to check for inner ear problems. her hearing test came back normal and no fluid, but he did order a vestibular test.

we did decide that it would be worthwhile to get a second opinion from a neurologist who sees ‘the weird of the weird.’ everyone was pretty thrown off by her age and felt like it was worth investigating. so most recently, we went down to cincinnati children’s and were really happy with the neurologist. he took the time to listen to our concerns, ask questions and suggested an EEG. a 30 minute test that isn’t invasive and she did great. we knew that if it came back normal the next step would be a 24 hour EEG and here we are.

we checked in this morning down in cincinnati and will stay the night while they monitor her via video and with the electrodes. through all of this, she’s become fairly terrified of doctors, has a fit any time any medical professional tries to touch her {see dentist disaster} and i’m fairly convinced she plays doctor with her dolls more than normal. she tries to be brave and yet gets SO frustrated all the time…not that i can blame her. i have no idea if she’s walking around dizzy for most of her days and how this all is affecting her, but i know she’s resilient.

{lots of questions about this shirt… it’s pinkblush and you can find it HERE…super cute + comfortable.. perfect for date night or to run errands!}

i know God’s got this, i know we’re going to be okay, but to say i haven’t had my moments would be a complete lie. i hate watching her go through all of this but i know we’ll come out on the other end just fine. i haven’t wanted to say much and really have only opened up to our family..not because i’m trying to hide anything, but i wanted to have some answers before we shared what was happening. while we still don’t have any answers, i also totally believe in the power of prayer and y’all have been so kind and thoughtful every time we’ve shared any tough news…you’ll never know how appreciative we are of the support. we’re hoping to have some answers soon, but in the mean time, appreciate all of the love. it’s been a bumpy road and i’m ready for a smooth path here for a bit.

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10 thoughts on “piper lynn

  1. Aunt Ebby is here with prayers, love and support! Faith that the outcome will be good and very manageable! ❤️🐝

  2. Prayers coming your way! My anthem in times like these is “Jesus take the wheel” that song brings me comfort and reminds me to have faith.

  3. Thinking of and praying for Miss Piper and the whole family! We love you guys!!

  4. Praying for you and your sweet girl! Please let us know if we can do anything to help! Dinners, laundry, etc – anything!!

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