what a week! life seems like it’s going 100mph and it’s not looking like it will be slowing down any time soon… last week, i posted on instagram stories that piper was being SUCH a trooper at her first cerebral palsy clinic appointment and y’all, the support that you continue to provide simply means the world. it also sparked a whole lot of questions…so here’s a rather large update!

some questions i’ve specifically been asked:

does piper know she has a disability?
the short answer is yes…i don’t think she necessarily understands it fully, but we’ve explained to her that she has cerebral palsy and i think she grasps it as much as an almost-4 year old can. she knows she wears a brace which helps her leg to ‘feel better and run super fast’. she knows she’s in physical therapy to help her grow strong like a superhero and that she has to work extra hard for some things that may come easier for other kids….just like everyone else has things that come easy and other things that are more difficult.

what kind of cerebral palsy does she have?
piper has spastic hemiplegic cerebral palsy {and completely different…ehlers danlos syndrome}. cerebral palsy can present itself very differently in each person.

it’s so hard to tell in pictures, what are piper’s symptoms?:
– stiffness + weakness in the left side of her body {meaning the right side of her brain has damage… MRI shows she had a mild stroke at some point, which we assume was during an apnic event in NICU when she would stop breathing}
– when she runs, her left arm + leg remains rigid, stiff and can appear ‘spastic’ while her right side moves normally.
– holds her hand in a tight fist
– falls frequently… walking, running, jumping she will trip, a lot, often times tripping over her left foot.
– appears clumsy – this has become more apparent as she’s getting older.
– difficulty meeting milestones…this was more apparent when she was younger. she didn’t walk until she was in leg braces, had difficulty bearing weight on her legs, etc. as she’s gotten older, she is more determined than ever. she rides a bike, a scooter, climbs our rock wall…she’s so determined to keep up with her sis.

how do you handle the girls having such different abilities?
spoiler alert: all of our kids have very different abilities + disabilities. it’s been fairly easy for us to explain that we all need different things and piper has been in braces since before they ever knew that it was ‘different’. a child in public was actually the first to announce that her legs looked ‘weird’ and it’s opened conversation for us… lila wears ear plugs in the summer because she has tubes from a significant hearing loss, piper has a batman brace, zach has an insulin pump because he’s a type one diabetic….their cousin has glasses and the list goes on. we’ve spent a LOT of time reading books + talking about how everyone is different and that’s pretty cool. some people are good at running, others reading, and others are great at playing the piano. we are all good at something and while we make an effort to talk about how we’re all different we also talk about how we’re all the same. it’s an open conversation in our house and we’re never afraid to talk about those things.

i thought she had epilepsy? what about her dizzy spells?
if you missed the last update {it’s been awhile!}, her dizzy spells stopped around may last year and {knocking on SO much wood right now}, praise GOD have since not come back. her EEGs continued to show abnormalities but that didn’t necessarily mean epilepsy. for now, we’re praying those horrific spells stay away and if for whatever reason they were to come back, we’ll be working with the epileptic specialists at nationwide + cincinnati. so the short answer is NO, epilepsy has been taken off the table!!

cerebral palsy clinic

last friday piper had her first appointment for ‘cerebral palsy clinic’ which is basically a day that a million docs will evaluate and see a child in one day… a coordinated day of specialists. we stayed in one room and the doctors came in one by one or sometimes together for a comprehensive evaluation. specialists include: physical therapist, pediatric orthopedic surgeon, physiatrist, nutritionist, orthotist, social work, etc.
it was a long day but being able to see all of her doctors {most we have known for awhile now, a handful were new to us} in one day was SO beneficial. piper was feeling pretty icky so to say she was a trooper was an understatement.

it was a busy day. a long day. i truly feel so blessed to have the medical team surrounding our little ducky…people who advocate for her and want her to be happy, independent, and healthy… it was a LOT of information crammed into one day. some conversations i was very prepared for and anticipating….while others i wasn’t prepared for and threw me for quite a loop.

the highlights:

knee brace
this was one i knew was coming… piper has had knee pain for quite a few months now and has difficulty with hyperextension + injury when it snaps back. there’s a fine line between providing enough support + limiting her movements. the goal is to get her in a neoprene type knee brace that she would wear while active to try to provide some extra support.

wheelchair
this was probably the hardest conversation i had all day and one i never saw coming. when the wheelchair was first brought up, i almost thought they were kidding…and then when i realized everyone was very serious, said, ‘i’m having a hard time even having this conversation because we’re talking about a kid who can ride her bike better than her twin sister and goes hiking at nature preschool’. it was more to start a conversation rather than a ‘she needs this immediately’. by no means does she need a wheelchair on a daily or even weekly basis… we’re talking about ‘big’ trips like to kings island, the zoo, disney, etc. piper works really hard for the things that we don’t think twice about. her brain + her body are working overtime to simply walk, let alone run + jump or just be 3. the goal of the wheelchair {especially for big trips} is to help her conserve energy so she can participate in activities independently. yes, we could still use a stroller…and we do sometimes. but as she gets older that won’t be as appropriate and she very much thinks the stroller is for babies… so if she has the opportunity to be a ‘big kid’ and be responsible for her wheelchair and participate in the same activities independently…that is the goal. we’re in the very early stages with this, but we’re going to start exploring.
when i mentioned i didn’t think piper could operate one independently, the PT snagged a little boy’s from next door {which is entirely too big} and within seconds…literally seconds, piper could maneuver the chair all. over. the. room. she thought it was the coolest thing ever…and i cried. a lot. it was weird to see her in it and there was a very large part of me that then felt guilty for holding her back on something that could be so helpful to her.

surgery
while i was anticipating this conversation, it didn’t exactly go the way i was hoping…piper’s femur, tibia, fibula and through her foot {on the left side} are growing like a corkscrew and rotating inward which is causing her left leg/foot to rotate inward pretty significantly which accounts for most of her falling. while X-rays showed her hips look pretty good {praise god!}, the only way to correct the deformity is a pretty major leg surgery where they will cut her femur, straighten it out and attach with a rod. they typically won’t do the surgery until a child is 8-10 but kiddos with hemi-cp may be candidates earlier, closer to the age of 6. we still have a year or two before we’re really getting into this so i’m trying not to completely freak out, but i’ll be honest, this part scares me.

handicap sticker
this just made me laugh… again on the ‘i can’t believe we’re actually talking about this’ and thought they were kidding… we now have a handicap sticker for the car. we’ll see how long it takes me to use it.

it was a long day. zach and i are still trying to talk through everything and are praying for guidance as we make decisions for our little ducky. she’s such a trooper…and bless her heart, the only thing she wanted was to get a spider painted on her face when we were done…so that’s what we did! she’s feisty. and sassy. and her attitude will be the death of me by the time she’s 16. BUTi count my blessings every single day and thank god for all she is ABLE to do. there is a part of me that has always been hopeful that this would all go away so it is a little tough to wrap my brain around the fact that this is indeed impacting her more than i cared to admit. we’ll keep trucking and continue to seek what is best for our little girl!