piper update | cerebral palsy

i really wasn’t planning this post for today…but every time i have sat down to write anything, i keep coming back to this.
blogging is such a weird thing sometimes. finding balance in sharing too much or not enough in transparency… being too ‘happy’ or being a downer. but the reality is that this little corner of cyberspace has come to be my space…sometimes to vent, others to share awesome brands + products i love…but at the heart it all, i blog for myself, i write because i love it and in 18 years, i want to have a baby book that i can look back on and remember all of these times… the good + the bad. the bonus? when it touches someone’s heart…inspires, encourages, provides a good laugh or cry… but at the end of the day, i lay it all out because i want to remember it all.

it’s been 2 weeks.
2 weeks since i sat in the rectangle room and some of my deepest concerns + fears were confirmed.

cerebral palsy.

the words sat heavy in the air and i nodded in agreement, knowing deep down all along that we’d be hearing those words. it’s kind of an out of body experience and a state i felt i constantly lived in while the girls were in NICU. watching from the sidelines as discoveries are made about your baby.

it’s taken me 2 weeks to wrap my brain around it all and really, i think this is one of the best ways for me to process..to put it all down.

so let’s back up.

almost 7 months ago, i had written an update on our sweet ducky and how she had been diagnosed with ehler’s danlos syndrome. while there are many different types, she presents as having the least complicated, marked mainly by hyper mobility. she had to have braces to learn to walk and since then we’ve run the gamut of taping her core, her legs, modifying her braces and then recently, shoe inserts.
it made sense and explained a lot of her symptoms.

piper continued to make progress, meeting milestones and developing…but something still seemed off.
as she met milestones, red flags continued to pop up.
the falling. the left-sided weakness. how she held her left arm.
how she was falling more and more behind compared to her peers who were typically developing.

deep down, i knew something wasn’t right.

zach and i had many conversations that her symptoms appeared to be getting worse and while cerebral palsy isn’t a condition that is progressive, as piper continues to develop, some skills may appear to have new symptoms.

the diagnosis

mild left-sided hemiplegic cerebral palsy

at it’s core, hemiplegia is a type of cerebral palsy {although hemiplegia can occur in other conditions as well} that affects one side of the child’s body, in ducky’s case, her left side, which results from damage to the brain. there are so many factors and really, i’m still learning it all. my brain hurts quite frankly from all of the reading.
while meeting with our physiatrist, we spent a lot of time discussing all of the information, testing, diagnostic criteria, etc. we are opting out of an mri of her brain because it may or may not show any damage, but at the end of the day, it won’t change the diagnosis or the treatment.
the question at hand, the one that has been haunting me is just when did that damage occur.
being 31-weekers, they were at a higher risk for a brain bleed, but the ultrasound of their brain came back clear when they were a few days old.
while no one can give a solid answer, the assumption would be that because she had a few pretty significant apnic events where she would stop breathing, damage would have occurred during one of those events. but it could have happened prenatally, during birth, or shortly thereafter…or within her first 2 years of life.
we just don’t know.

what does it look like?

piper’s case is very mild and is most noticeable when she is doing gross motor activities, like running. she will hold her left arm very rigid and runs with spasticity, falling frequently, tripping over her left foot that turns in significantly. she hyper extends her left leg significantly and her reflexes on her left side are hyper active.
to be completely honest, i’m not exactly sure where the symptoms from EDS end and where the symptoms from the cerebral palsy begin.. it all runs together and for me, it’s just piper. she appears to be VERY clumsy and if you saw her at the park, you would assume just that. she talks a million miles per hour and can string sentences together like a 4 year old.

the treatment

not much is changing in this realm because we’ve been so proactive to get her the services and support that she needs. we will be increasing her physical therapy and we’re actually going to have her fitted for her new brace today. the main goal is to protect her left leg from hyperextending and decrease her foot from turning in so badly, as well as hopefully prevent some of the falls. we’re working mainly on strength during physical therapy and increasing tone with our at-home exercises.

so what does this all mean?

honestly, not a whole lot. i’ve spent a lot of time reflecting on the amount of times i sat across the table from parents explaining that the biggest benefit of having a diagnosis is that it’s a good starting point for a plan of treatment.
i don’t care if you call her ‘purple’…but if it gives us access to support, treatment, therapies, or a starting point for treatment…then let’s do it.
but the reality is that my heart fell to pieces sitting in that appointment. my heart still hurts.
i wasn’t surpirsed or shocked… i knew it was coming. but the words hurt because the reality of it is that she won’t grow out of it..
for now, we are strongly discouraged from doing activities that will encourage her hyper mobility {think dancing + tumbling}, but are encouraged to do swim lessons.
she will probably have her brace on her left leg longer than we were anticipating.

i’m tired. my cheeks are tear-stained. and my mama heart aches.
but i have SO much to be thankful for. as i said before…she has a very mild case.
this hasn’t affected her cognition, communication, or social skills and for that, i am shouting praises.
i took 2 weeks to be sad. to hurt + cry…
the funny thing is that the day she was diagnosed, i was throwing myself a pity party and she was being a complete b.r.a.t. after naps… i had her in the bathroom and asked her to pull up her pants. she was throwing a full on tantrum and it was my last straw, so i’m crying and she hauls off and kicks me square in the shin and screamed ‘no!’ in my face… sooo. long story short, she is still her feisty self and sassy as ever.
for the first time ever, i thanked god that she had the ability to kick me.

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15 thoughts on “piper update | cerebral palsy

  1. My husband has a very mild cp too. But his presents very obvious because one arm/hand is small and not functional. But otherwise he has lived a pretty normal life. Didn’t get to be a sports star, but otherwise he is pretty normal. It is not progressive which is the good thing.

  2. Tears,….of love, faith, joy, some sadness, but gratitude for Piper’s parents who will ensure she has every opportunity to thrive. This post is very special as is the author. ❤️???????

  3. Lindsey-thoughts and prayers are with you always. Jordan has the same diagnosis (on the left side even!). Like you, we are taking it all in stride-doesn’t change the anything! These kiddos are so resilient! He just got his suresteps two weeks ago, so we are working on walking (he is behind a bit with his gross motor skills-but we are sure he will catch up!). Therapy has also been such a huge help with is left hand-I’m noticing a HUGE difference. If you ever want to talk (or cry, let’s be honest that happens too!!), let me know! 🙂

  4. You shared this story so well. We all get so scared when we get news like this over our kids. Thankful that it’s a mild case and that you all have been and continue to be such advocates for her. I love the picture of her and her sister playing. Such sweet love!

  5. Piper is the luckiest little girl to have such amazing parents who are her advocate, her support system, and will do nothing less than to help her be successful in everything she does. You’ve given her hope, help, and a bright future. I’m proud of you as tough as this is. God gave us more strength than sometimes we realize we have. We’re always here for whatever you need! Love you!

  6. I never would have noticed this with Piper had you not shared. In all the photos you share, I see the perfect little girl. And even now, she is perfect. God has made her in His image and she is going to grow and flourish. Ill be praying for her, your family and this process of new “normal”.

  7. I’m sorry to hear about this diagnosis, but it sounds like you and your husband are very proactive and doing everything you can to help your little girl. I wish you luck in your journey! Thank you for sharing!

  8. Thanks for sharing. I cannot imagine how hard it is on your mama heart. You are an amazing mother and I have no doubt that nothing in Piper’s life will be slowing her down.

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