Juliet Rose's Journey

by Jordan and Brad 11:28 AM 0 comments

Finally after a 15 plus hour drive with a giant U haul, my SUV packed to the brim, 3 children, two dogs and all of our worldly possessions, we made it to Texas! This is the first time the children were able to see our new home, and our first family picture of hopefully many in our dream home. 

It has been a BIG year for our sweet little warrior.  After traveling five hours each way to Shands Children’s hospital in Gainesville typically one week out of every month for the first year and a half of her life, we realized that we needed to move closer to a children’s hospital.  All the travel was costly, and more importantly, wasn’t fair to our two other kids.  So after much deliberation and prayerful consideration, the Boykin family packed up and move to the Dallas-Fort Worth area, smack in between two world-class children’s hospitals – Cook Children’s in Fort Worth and Dallas Children’s. 

If we still had any doubts, they were all removed soon after settling in.  Juliet is getting outstanding care, and the many therapies that she desperately needs.  We spent over a year working in Niceville to try to get vision therapy, and it proved almost impossible.  Here, Juliet is getting physical therapy, occupational therapy, feeding therapy, vision therapy, orientation and mobility therapy, and hearing therapy.  We have been unbelievably impressed by all her doctors, specialists, and therapists, and they are all 15-25 minutes away (beats the heck out of traveling to Pensacola and Gainesville constantly!).  She has also learned to sit up by herself, since moving to Texas! Go little Juliet, go!

Right after Juliet woke up from her strabismus surgery.  Amazng, right?!

Before stabismus surgery.  This is actually a great picture, and her eyes were typically much more crossed on a daily basis. 

Juliet getting into the sitting position for the first time!

The first big development since the move, was Juliet having corrective surgery for her strabismus (crossed eyes).  As always, we were as nervous as could be, but her surgeon assured us that we were in good hands by asking a blessing over little Juju before whisking her back to the operating room.  Indeed, we were in great hands, and the surgery was an amazing success.  Her beautiful little blue crossed-eyes are now straight as an arrow.  The benefit hasn’t just been cosmetic, either.  She is focusing much better on things further away, and the improvement in her vision overall has been undeniable.

We have also recently found out, that Juliet is completely deaf in one ear, and only has minimal hearing in the other ear.  She has had several sedated hearing tests and scans of her ear anatomy, to determine how we can maximize the hearing she does have.  We will be meeting with her team this week to figure out a plan.  It has been expressed to us that cochlear implants are not an option, because insurance will not cover only one implant, and it sounds like traditional hearing aids are not an option either.  Hopefully our team of audiologists, her Ear Nose and Throat physician and her neurologist can come up with a miracle plan for Juliet. 

Juliet getting an EEG, and she does NOT love her new hat 

The next big development was not nearly as joyful.  On the morning of Juliet’s big second birthday party her father looked down and saw that she was blinking rapidly and then her right arm and leg began to twitch rhythmically.  When he picked her up and she didn’t snap out of it, he knew right away that she was having her first seizure.  We had always been aware that Juju was at high risk for developing seizures, but we were terrified and heartbroken nonetheless.  We rushed her immediately to the nearest walk-in clinic where the doctor was able to stabilize her and send us on to Cook Children’s.  At Cook’s, they took great care of us as they ran the barrage of scans and tests.  Ultimately, it was determined that she has a subdural hematoma (a pool of blood under the covering layer of her brain) and that as the body naturally reabsorbs the blood it can act as an irritant in the cerebrospinal fluid and cause seizures.  So, we left with a new anti-seizure medication and a new sense of awareness.  Hopefully, after the hematoma is gone through natural reabsorption, she will not have the heightened tendency for seizures and she can be taken off the medication.

Halloween with our little goldfish, Paw Patrol's Everest, and Mario.

Mama Jordan and her babies

All in all, the move has been a great one for Juju and our whole family.  The kids are nearer to their other grandparents as well as their aunts, uncles, and cousins.  We dearly miss our Florida grandparents and all our wonderful friends and great doctors and therapists there, but we know in our hearts that God led us to this place at the right time, and we are exceedingly grateful.  Here’s to 2018 being an astounding year of fantastic growth, development, and advances for our brave, determined, beautiful, sweet little girl.

Waiting for therapy to begin

Look at her adorable little pigtails!

Twirling her toes in Nonni and Opa's grass

Sitting up, playing and talking to the beautiful baby in the mirror. 

Juliet looking at herself in a mirror.  Check out that red hair! 

Bath time in her special needs bath chair

Juliet in her wheelchair.  She's doing an awesome job eating solid foods.  It's been a SLOW and steady marathon :) 

Using a therapy sensory sack. She's still so tiny! Even the smallest size just draped over her. She is still in the 1st percentile for weight, and a little higher for her length.  Her noodle is still over 50 cm, so it's off the charts, but she's growing into that beautiful noggin. We are working very hard in feeding therapy, and with jazzed up fancy formula, and calorie packed snacks  to help her little body catch up.