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. 

It feels like it’s been forever since we’ve written a blog update.  We have been so busy falling into our new normal, that we usually just update on Facebook, but I wish we had been more diligent about documenting our daily lives. 

Where do we start?  Juliet turns ONE on Friday! This has been the longest, shortest year of my life. We recently took a trip to Gainesville for appointments and an MRI.  We checked into The Ronald McDonald House almost a year to the day from when we moved down awaiting Juliet’s arrival.  Time flies when your schedule is nuts! 

Juliet is growing and getting big.  Well, big for Juju.  She’s still tiny weighing in at a whopping almost 16 pounds.  She goes to physical therapy, feeding/speech therapy, has an in-home developmental specialist, and will start occupational therapy Wednesday.  She will need vision therapy, and we are trying to meet with a dietician to put some pounds on this little chicken nugget. Juliet drinks a bottle in no time flat, but she has an aversion to purees and solids.  She’s getting better every day, and she actually likes pudding. That’s about it :) She likes when I smear a little melted chocolate on her lips, hey, we Boykin ladies do enjoy our chocolate. 

She has recently been diagnosed with Cortical Vision Impairment.  Her eyes are perfect structurally, but her brain and eyes don’t communicate correctly.  We are contacting The Florida School for the Deaf and Blind in St. Augustine in hopes we can get a therapist to help out. In the meantime I am working with her at home, and we are patching her eyes to help with her strabismus (her eyes cross intermittently).  We recently found out that besides having a vision impairment, Juliet is having trouble hearing.  Her eustachian tubes don’t drain properly, so fluid has built up behind her ear drums.  She has surgery planned to put tubes in to allow the fluid to drain.  Hopefully this will help her eardrums vibrate, receive sound and help her to start communicating with us.  She babbles, but hasn’t started really speaking yet.  It’s coming!  You can see this little girl has a lot to say.  You should see her fuss at us when we try to make her do something she doesn’t want to do.  She is incredibly independent.  A phrase we utter constantly, is “a Juju does what a Juju wants”.  We are still working on her holding her own head up, working on sitting up, and working on getting her head up so she can crawl.  She’s incredibly strong from the neck down.  You should see her flip onto her stomach and push up like she wants to stand.  Once she’s strong enough to lift her head, she will be off like a bolt. Her head is still roughly the same circumference as it was when she was born. She is in a beautiful pink helmet painted with roses to help shape her noodle. Her head is obviously large, but from laying in the NICU and PCICU bed for so long, it was flattened and elongated. Our time in the helmet is coming to an end soon, so hopefully it has helped “round out her head” as much as we hope it will. 

 

We have ordered an adaptive wheelchair/stroller to help Juliet interact with the world around her.  She spends so much time on her back or in her carseat, we hope the chair will allow her to feel like a big girl. It will have a harness to help hold up her trunk.  She has a lot more head control when her energy isn’t going into holding her trunk upright and her head.  This should all help with her feeding too! Yes, this little one is complicated!  She also has some congenital scoliosis, and hopefully helping Juliet find alignment when she’s seated, will help her spine in the long-run too.  Her orthopedic surgeon will follow this, and we will monitor her upper spine for possible future scoliosis.  Apparently babies who have had open heart surgery are at risk for curving of their upper spine down the line. Right now, she just has scoliosis in her middle spine with some fusing of her vertebrae.

Okay, enough with the housekeeping, I feel like I spend so much time discussing with people, therapists, specialists, surgeons, etc. what difficulties Juliet has going on.  I still refuse to say “birth defects” and prefer “birth hiccups”.  Juliet is not defective in any sense.  I wish the cutie-patootie would sleep through the night already (she’s still up at 11, 3 and 5), but other than that, she’s darn near perfect. She has fallen into this family seamlessly.  Jack adores her, Liliana dotes on her. Liliana is the first to scrunch her brow and fuss at me if Juliet is getting cranky for a bottle. She will tell me “Mama, Juju needs ba-ba, NOW”! I don’t think I have to worry about Juliet wanting for anything. Her siblings are very attentive. Sometimes Liliana the tornado loves on her super hard.  We are thankful she’s in a helmet during these
“affection-induced-super-hugs-that-end-up-in-Liliana-tripping-and-falling-all-over-little-Juliet”.  Hey, she loves BIG. She gets a burst of love sometimes, and excitedly tells me “JUJU CUTE!!”

Juliet seems to draw people to us.  People stop us to tell us how cute she is, they inquire about her helmet, and people end up sharing their stories with us.  I had not heard of the term hydrocephalus before Juliet, and this year, I’ve connected with several strangers that have a connection to hydro. People have stopped us to ask if they can pray over Juliet.  Yep, she’s a special baby, and she has drawn special people into our circle.

Okay, now onto the next big hurdle for Juliet. Before Christmas we were in Gainesville to meet with our doctors.  We met with a plastic surgeon to talk about Juliet’s nostril. It didn’t form correctly cosmetically or functionally.  We wanted to know if she needed surgical intervention now to help her breathe better, and to appear more symmetric with the other side. First off, yes they will fix the appearance of her nose “when kids start to make fun of her” or when she starts to be self-conscious about it.  I would think to do it before that point to shelter her from mean comments, but I guess she needs to grow into her nose as much as possible first. Okay, so right off the bat the PS says, we will discuss her nair, but she has some other things going on we need to discuss. Hold the phone. SKIIIIIIIRT. It’s never the appointments we are freaked out for that get us.  It’s the ones we walk into unsuspecting that punch us in the stomach.  Juliet has a dimple in the middle of her nose, and has had it since day one.  Apparently that is a tell-tale sign of a dermoid cyst. Some of you might remember that Liliana just had surgery to remove a super common dermoid cyst from behind her ear. No big deal! Outpatient surgery. NOPE.  In true Juliet fashion, a nasal dermoid cyst is incredibly rare.  I think it’s 1 in 30,000.  At the very least, the cyst is causing her nose to grow out wide, and would need to be removed. Worst case scenario, it’s grown into her brain and will require neurosurgery.  

Which card do you think Juliet has been delt? You guessed it.  Juliet is rare, as rare as her combined conditions.  It looked like the cyst is going either to her brain, or has passed the threshold into her brain.  We went to Gainesville to get a sedated MRI to get a better view.  After the discussion with the surgeon tonight, it was too hard to see still.  They will need to go in through her nose (cut vertically down the center of her nose and at the base) and try to remove the cyst.  If the surgeon gets to where the cyst meets the cartilage that seperates her brain from her nasal cavity and sees that it has crossed into the brain, they will stop, get our neurosurgeon that will be standing by and he will perform neurosurgery. He might have to take off her frontal bone to get to her brain.  They will have to take great care not to rupture the cyst, causing infection, and they will have to be very careful of her shunt.  

When you have a baby with hydrocephalus and a shunt, you know she will likely have neurosurgery more than once in their lifetimes.  Shunts fail. They keep our children alive, but they also fail.  Some children and or adults have shunt revisions over and over and over.  We are very lucky (knock on wood) to be approaching her shuntiversary (23 hours after Juliet was born) without a shunt complication.  I never expected her to have to have neurosurgery for anything besides hydrocephalus.  The cyst needs to be removed and quickly because of the risk of infection.  The cute little dimple is actually an opening to the cyst, and if it gets infected, it can turn into an infection in her brain, or meningitis. Sooooooooo, the plastic surgeon is headed to the OR tomorrow just to track down our neurosurgeon, so she can discuss more of our plan before she leaves the country on Wednesday for a conference.  We have a surgery date set for February 14.  Oh, if the surgery goes as planned, they will have an ENT on call to put tubes in her ears while she is still under. 

Do you ever feel like your world is spinning around you too fast for you to stay on? I do.  I often feel like someone is sitting on my chest and shaking my head around in circles.  I can’t catch my breath. Life as a mother to a special needs child is hard.  It’s scary.  It’s lonely, even surrounded by an amazing support system of family and friends. I question myself a million times a day.  Have I fought hard enough for her today?  Have I done enough research? Have I contacted every specialist? Am I in the right online support groups?  Have I asked the right questions?  Did I push her hard enough today in therapy? Then the really scary thoughts hit usually between her 3 am and her 5 am bottles. I have known more people this year to lose a child. It’s obviously our biggest fear, and as strong as we make her out to be, she’s painfully fragile. Really, we all are, but her hiccups make her even more so.

 

When the day is too overwhelming, I try to take a moment and drink my kids in…their smells, their giggles, their imaginations. Jack smells like pencils, recess and syrup. Liliana smells like candy, baby shampoo and like our dogs She bullies them daily into loving her. She bullies with hugs.   They really didn’t like her, and now they submit to her and lick her head. That’s my Liliana. Remember, she loves hard. Juliet smells like lavender bath soap, a stinky helmet because she wears it for 23 hours a day, and she smells like formula and that smell of a new diaper.  I forgot how wonderful a fresh diaper smells. That sounds weird, but they pump in some intoxicating baby fresh smell into them.  If you don’t believe me, go smell a swaddler after you haven’t had a baby in the house in a while. Instant baby fever.  I didn’t get the chance to forget that smell in between having Liliana and Juliet.  I still have 2 kids in diapers. YEESH. 

 

I apologize if there are typos in this long-winded, rambling word soup.  I won’t go back and reread this entry. Can’t. It was hard to put it into words the first time, and putting everything into words makes it real.  Please continue to keep us in your thoughts and prayers, and thanks so much so many of you who already have and do.

Jordan

Once again, I am remiss in my delayed updating of this blog.   I won’t make lots of excuses, but I will say: don’t you ever believe anybody who feeds you a line about how the third+ kid just blends into the chaos or isn’t any harder than two.  Managing three kids is exponentially harder than two.  It also doesn’t help that our little tornado (Liliana) is firmly in the thick of the terrible twos.

Jack is such a great big brother

My Sweet Girls

 We have been unbelievably blessed since returning home.  First off, two major financial and logistical prayers were answered.   Thanks to my incredible friend, Mike Nunley, who put in much sweat, tears, and frustration helping me fix up my boat, I was able to sell the boat for a really good price.  I honestly don’t think I could have had the time and expertise to do it all on my own and definitely would not have been able to sell it as quickly and lucratively without all his help.  The sale of the boat allowed us to check another one off the list, as we put that money toward a new vehicle for Jordan and the kids.  One of my dad’s co-worker’s husbands owns a local dealership, and was able to put us into a great vehicle at a really reasonable price.  If you’re local and looking, go down and check out Bayview Motors on the south side of Jon Sims headed toward ValP.

Life for Ms. Juliet has been crazy hectic, but awesomely encouraging.  She now has physical therapy, occupational therapy, ophthalmology and vision therapy, neurology and neurosurgery follow-ups, cardiology follow-ups, and her regular visits with the pediatrician.  We have been extremely encouraged foremost by her cardiology appointments.  When we first were transferred over to Dr. Roca at Sacred Heart in Pensacola, the ultrasound tech looking at her aortic repair said it was the best such repair she’d ever seen.  Dr. Roca confirmed and said that it looked amazing and her heart was performing beautifully.  At our next visit, another tech looked at Juliet’s heart and immediately asked who the surgeon was, because she thought it was one of the best repair she’d ever seen as well.  Dr. Bleiweis, you truly are an artist (maybe even a wizard).  At this second follow-up, Dr. Roca said that Juliet was performing so well that she could be taken off of her blood pressure medication.  This was a huge blessing, as Juliet hated that medicine and it was quite a struggle to get her to take it.  Not to mention, it was a hassle with at least one dose often falling at an awkward time for us.  Also, because it is a compound drug that has to be mixed, you can’t just fill it at CVS/Walgreens, so we had to go to a different pharmacy specifically for that one drug.  And although insurance covered most of it, the refills were nearly $300/bottle.  We are so incredibly thankful that little Juju’s heart has healed so well and is doing its job as well as we could possibly hope and pray for.

Juju is such a happy baby, despite everything she's been through and is still going through

We also had our first round of neuro follow-ups back in Gainesville with doctors Pincus and Ghosh.   We received mostly good news from there as well, though Dr. Pincus recommended Juliet be fitted for a helmet.  Due to her head enlargement from the hydrocephalus and sedentary time in the ICUs, she’s developed some elongation and a flat spot that can hopefully benefit from a cranial remolding helmet.  Dr. Ghosh also said that she is developing well, and although delayed in some areas, seems to be doing rather well and meeting most of the milestones for her age.  We enjoyed our time back in Gainesville, and even got to visit with some of our friends from the NICU!  

Great visit with NICU nurse Marissa

It was so good to see them and it was almost like visiting family you haven’t seen in a while.  We were also blessed to be able to stay with our friends back at the Ronald McDonald House.  Again, it was kind of like going home to a home-away-from-home.  It was great to see our friends there and to hear many of them making great progress, and we were saddened to hear about others who had not fared as well.  We continue to lift all of them up in prayer and hope for the fullest of recoveries.   While we were in town, Sherry, the regional director for RMH of North FL invited us to attend a fund-raising event at the Florida Museum of Natural History.  She asked if I’d be willing to say a few words about the House and what they’d meant to our family, and of course I was honored to do so.  It was a fantastic event, very well put together and catered.  We enjoyed getting to walk through the butterfly garden beforehand and loved visiting with everyone afterward.  I am so very honored and grateful to be able to give just a little back to RMH for everything they have meant to me and my family.  I hope that as we return for more follow-ups in the future, that I have more opportunities to do so.

Butterfly garden at the Florida Museum of Natural History

Recently, we made the journey back to Durham, NC for Juliet’s second round of stem cell infusion.  Having just returned from visiting Jordan’s parents in DFW, we didn’t want to put Juju through all of that travel.  That much time in the car seat is difficult for her, and we wanted to make it as easy on her as we could.  So, we opted to fly up this time.  We had other concerns with the flight and the potential for particular discomfort for her due to the added weight and fluid in her head, but she did amazingly well.  

Visit with the cousins

Buc-ee's on the way home from Nonni and Opa's house

Juliet loving her first plane ride

She only fussed briefly on ascent and quieted down after feeding allowed her ears to pop.  We were worried about missing our connection in Atlanta with only a 40 minute layover, but our flight landed early and we got to the gate with time to spare.  At Raleigh-Durham, I got a free upgrade to a minivan on my already dirt-cheap priceline rental car, and once again the Bucklands were kind and generous enough to allow us the use of their home for the week.  We went a couple days early since plane tickets were a few hundred buck cheaper if we traveled Sat. instead of Sun. or Mon., so we had a couple days to kill.  We had a really nice time and enjoyed Durham.  We ate quite well and enjoyed a couple really tasty beers at the Fullsteam Brewery one day.

Enjoying a down day at Fullsteam Brewery before Juliet's treatment at Duke Children's

I got to partially check off one of my sports bucket list items, by walking right out onto Coach K Court at Cameron Indoor Stadium.  God bless my wife for humoring me.  There’s a ton of construction going on in the Duke sports complex and it took us nearly an hour of detours and backtracking before finally finding somewhere to park and making our way to Krzyzewskiville.  It was really cool, and I don’t care where your college sports loyalties lie, that place is just a shrine to everything right with college basketball.  I still want to see an actual game there, but it was cool enough just to see it in person.

Me standing on Coach K Court at Cameron Indoor

We also got the opportunity to meet up with my mom’s cousin Norma who lives in Raleigh.  She is the absolute sweetest lady in the world, and we had a really great time getting to know her and getting to visit.  She took us for an excellent dinner at Elmo’s Diner and outstanding dessert and coffee at Francesca’s Café.  Before dinner was over, we felt like we’d known her all our lives.

Dinner with Tia-Abuela Norma -We love this sweet lady

On infusion day, we arrived amidst a rainstorm, but the mood inside was anything but gloomy.  Dr. Kurtzberg and her team at Duke Children’s are first rate all the way around.  They made us feel so welcome and their care for Juliet was so genuine.  We were somewhat saddened to hear that the quantity of cells remaining was sort of in between enough to give a third infusion or to simply up the dose of this second one.  Ultimately Dr. Kurtzberg decided that it would be best to give a higher dose this round and go ahead and use all the remaining cells.  Once again, there was concern over Juju’s tiny veins.  There was a good deal of talk about potentially putting the IV in her head if they were unable to tap a vein in the arm or foot.  We of course told them, to do whatever they needed to do.  And, of course, Dr. Kurtzberg proceeded to nail it on her first shot.  The infusion was complete soon enough and after the brief observation period, they sent us on our way.  It was definitely bittersweet knowing we would not be coming back any time soon.  It is comforting that we have done everything we can to give Juliet her very best shot in life.

Getting ready for stem cell infusion

Dr. Kurtzberg working her magic

Once back home, Juliet resumed her hectic schedule, punctuated by another trip to Panama City to receive her shiny new pink helmet.  It had been a windy, complicated road getting Juju bean fitted for her helmet and the whole process was fraught with red tape and bureaucracy, but we got her into it ultimately.  And she looks absolutely adorable in it.   It’s our sincere prayer that this helmet can help her head to regain a more normal shape and that it will ease some of her other discomforts.

Getting a 3-D scan to create the helmet

Initial fitting for Juju's helmet

I don't think she's a fan

This thing's not so bad...

The last thing that I have to mention in this blog is an unbelievably gracious gift Juliet received from two of our good friends.  Yesterday, our friends Brail and David came by to drop off a gift that David had made for Juliet.  We knew basically what the gift was, but we didn’t know what it would really look like… and I have to say that Jordan and I were both floored by how amazing the rug that David made is. It is absolutely gorgeous, and is probably the nicest, handmade gift I’ve ever gotten.  It is so soft and comfortable, Juliet was immediately right at home and at peace on it.  It is something that will last her a lifetime, and we couldn’t be more thankful to Brail and David.  It’s been instantly useful as a place for Juju to do her physical therapy home exercises and stretches, and as a nice cozy place to just chill out.  The pictures don’t adequately do it justice, it really is incredible.

Thanks so much Brail and David!

Juliet loves it!

We continue to be unable to sufficiently express how thankful and appreciative we are of everything that you have all done for us and continue to do for us.  We appreciate your enduring thoughts and prayers for Juliet and for all of us.  We love you all.

Bye for now, everybody!