Our Cerebral Palsy Journey

Our first daughter, Grace Harriet, has right hemiparesis cerebral palsy. If I hadn't told you that, you might never have noticed. She is, in all respects, beautiful, bright, vivacious and active.

She is also very sassy and sweet! (pictured: 4 months, pre-diagnosis)

She (we) had a completely normal pregnancy and birth. Perfect moro reflex and all. Around three months, we noticed she liked to keep her right hand clenched. We asked her doctors about it - no ideas. She passed all reflex tests. Around six months, we requested therapy. Around seven months, she started physical therapy (evaluations take a while). At eight months, she got an MRI and was diagnosed.

Grace after her first mass, two weeks old!

The diagnosis rocked our world. Our baby?! Had a stroke?! In utero?! {{Frantically remember all of pregnancy. Low-risk everything.}}

Friends, it happens to the healthiest of patients. Sometimes, it just happens.

I wrote out her whole story here.

What does her diagnosis mean?

Cerebral palsy means that she had a stroke before the age of 1 (in her case, in utero). Right hemiparesis means it occurred on the left side of her brain and affects her right side. It is not progressive, which means the damage is all done. She can only get better! She does not need a shunt or any type of surgery. Fortunately, baby brains are extremely elastic, and with frequent and rigorous therapy (at home and with therapists), her specialists believe she will be fully functioning with all limbs. Her only limitation is to avoid activities with potential head injuries (which is good advice in general!).

What does life currently look like?

She is three years old! She has graduated out of the in-home state services, and now she has therapists come to her preschool. She still has out-patient with three therapists on Tuesday mornings. She has occupational therapy and physical therapy every week, and then has a speech therapist and teacher come once a month. She has walked since 22 months and wears an SMO on each foot to help with her gait and feet/ balance. She is consistently using her right arm, and we are practicing using her right hand (e.g. teaching her to open and close it spontaneously). Her speech exploded! This is especially amazing because her stroke was in a language center. She is currently not delayed in speech. (We use Baby Signing Time to help as well.)

She has two younger siblings, whom she loves very much. She loves trains, dressing up as a Frozen princess, dancing and singing, playgrounds, and the color purple. She had eye surgery this past July, and is doing great there. She has a pediatrician, neurologist, orthopedist, optometrist and a slew of therapists who adore her! We are all on the same team.

Is the day to day hard?

Not particularly, unless the coffee doesn't kick in - it is a lot of routine; it feels like I am taking care of a 3 year old, which has its own joys and challenges. She is very intelligent and clever, and is our little explorer!

Follow her journey here!

If your baby has been diagnosed with CP, be not afraid.

There are so many resources available. There are support groups. Do not start comparing your baby's diagnosis to others': the spectrum of CP, like Down syndrome and autism, is very wide. No two CP diagnoses look the same. (The doctor who diagnosed Grace has cerebral palsy, attended the Mayo Clinic for medical school and is triple board certified; he is certainly an example of endless possibility!) There is always great room for improvement with CP!

Grace is the best daughter, and her diagnosis changes nothing - we will always do and be the best parents to our children.

Your child is going to have a full life: you are going to have great days and hard days. The best part about her diagnosis is that we know what we need to do, and can do. The hardest part is not knowing what the future holds... but what parent knows that anyways?! As a general rule, I do not discuss "the future" except with Will and her specialists.

We trust, we love and we feel God's blessings in life with Grace.