While Lucie was in the hospital, one phrase we heard a lot from the doctors was that they were, "cautiously optimistic" about Lucie's progress. She had a lot stacked against her, there was no way anyone could predict what the outcome would be, but she steadily gained strength daily. And even when they found that she had grade 3 and grade 4 brain bleeds (grade 4 being the worst), they did not have to manually intervene and the bleeds began to reabsorb on their own week after week until they were completely gone. Every medical professional that sees Lucie today cannot believe that she was a 24 week micro-preemie. They have seen such incredibly different outcomes, and it is never lost on us just how amazingly well she is doing. I don't know how often doctors use the word miracle, but we hear it about Lucie often. She has come a long way. We know that so much of that is thanks to God and His protection, thanks to so many prayers, thanks to an incredible NICU, and thanks to a TON of therapy. We also know, that there is still more support that is needed.
Lucie started receiving Early Intervention Therapy Services in July of 2015. Up until that point in time she would mainly lay on her back and would sometimes track objects (she was seven months old). She started off with about two hours of therapy per week, receiving Special Instruction Therapy and Occupational Therapy. By October, it was clear that she would benefit greatly from Physical Therapy as well, so she started getting an additional hour of PT per week.
By the end of 2015, all of the services she was already receiving doubled, and Speech/ Feeding as along with Nutrition were added to her menu of therapies.
And she thrived.
Our iCal became a color coded puzzle and as we all adjusted to the organized chaos, we remained "cautiously optimistic" of her progress. She was easily motivated by toys which we were told was a gift. The first time I saw her spin the wheel toy, I wanted to cry because it was amazing to me that she understood the toy and what it was meant to do.
Lucie continued to surpass the odds and smash all doubts in to oblivion.
"She doesn't have Cerebral Palsy."
A sigh of relief. A prayer of thanksgiving, as we thought about the difficult road still ahead but also of the hundreds of miracles like that at every turn.
A few months later, "she doesn't have Autism". Early on, her developmental pediatrician had given me a pamphlet about Autism. "Read through this and just keep this in mind as you watch her the next few months. Let me know if you have any questions."
We learned early on to not Google anything, so we just kept moving forward day after day, trusting the guidance we were receiving from Lucie's troop of therapists and doctors and completely oblivious to the dozens of other potential syndromes and diagnoses that still loomed as a potential result of her extreme prematurity. One by one they got scratched off the list whether we knew it or not.
She continues to work so hard. Repetition is her friend. All of this ongoing therapy has probably been harder for us than it has been for Lucie because this is all she has known. She has nothing to compare it too. It's not like she went from being able to simply do things intuitively to suddenly not knowing how. She was a blank slate, willing to try and try again. When she was finally able to sit up on her own without support, it made all the tears she had shed on the therapy ball worth it. Then she started to crawl, to pull up to stand, to walk!!!! Each accomplishment such a huge milestone that we celebrated through sweat and tears. And now, she's climbing, jumping, running, going up and down stairs, and dancing! Not to mention, talking more and more, singing, laughing, and throwing a tantrum here and there. (We even celebrate that, well not in the moment, but still, we're grateful for it because it shows us that she's developing like other typical 2.5 year olds.)
Her drive is an inspiration to us every day.
To give you an idea of all the hard work that has taken place to get us to this point... In the last two years, Lucie has received over 1,400 hours of dedicated therapy at home and at her Day School. PLUS all the time we have spent with her reviewing, practicing and coaching her up through the many aspects of movement, language and play to emphasize what she worked on during her sessions (especially Rob, never afraid to plop her on the therapy ball to gain some more strength in her core).
As you know, in April, Lucie underwent two days of evaluations to see if in September she would be eligible to transition out of Early Intervention Therapy and into Preschool Special Education. Today we met with the District Administrator from the NYC Department of Education who reviewed all of Lucie's evaluations to see if she would recommend continuing services. She determined that even though Lucie is doing phenomenally well, and on par with other children her age in certain areas, in order to keep this momentum going it would be best for her to continue to receive support in the Preschool Special Education program! Which is exactly what we were praying and hoping she would say.
So what does that mean? In August she'll complete her time in Early Intervention, and we will hug all of her therapists and say thank you, even though that will never be enough to express our gratitude. Lucie will then get to attend school starting in the fall for the full day in an integrated preschool classroom setting. Half of the kids will be in special ed and half will be at typical development levels and will serve as models for the other kids to learn from. She will receive speech therapy, occupational therapy and physical therapy a few times a week at the school as well. On top of all that, after months of searching and touring, the school she is been recommended for is just ten blocks away from our apartment. Did we mention that everything up to this point in Early Intervention and her Day School as well as everything she was just approved for through the Preschool Special Education Program is 100% covered by New York City?
We're beyond thankful for God's provision for Lucie. I recently read that the feel of a prayerful life is "cautious optimism", where you aren't, "called to always have to see everything in life as pretty and good and uplifting." Rather to, "trust that God sees what [we] see. In fact, he sees beyond what [we] see. He sees the whole story and is completely trustworthy to be at work on a grand scale, in the minutia, and even in [our] own life." It was so encouraging and it is with that mindset that we will continue to be cautiously optimistic as we pray and watch Lucie grow. What a privilege it is to be her mom and dad and to get to witness God's work at hand in her life each day in the great things and in the small things too.
Thanks for joining us on this journey.
Love, Los Hicksons