Home Life (Sorta...)

by Anonymous 9:31 AM 2 comments

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!