The joys of my first pregnancy. The morning sickness, the bouts of nausea each time I stepped into WCF’s parking garage and the smell of rubber and exhaust drifted up my nose, the car door stocked with crackers and lemon drops, the comments of my ever growing size. I loved it! Seriously, I did.
My first pregnancy was pretty dang perfect. I loved my massive belly and feeling all the kicks and movements inside. Each and every doctor appointment went off without a hitch and I even did a first-mom pregnancy study that allowed me to get three additional ultrasounds during the course of my pregnancy. All of which showed a perfectly healthy baby boy with nothing to worry about.
Our first son Noah was born on 11-10-11. Very minor complications occurred but Noah ended up kicking and screaming like any healthy newborn should. The only caveat was that one of his eyes was bruised and swollen from his long journey. Nothing to worry about we were told and we started to jokingly call him our little pirate. Our perfect little pirate!
On the second day in the hospital when the pediatrician first examined our son we had him take an extra look at the eye that was still swollen and shut from the bruising. He did a light test and noticed that his left eye was “not responding”, his pupil was not dilating, and scheduled an appointment with a pediatric ophthalmologist. It was this day that changed everything we had ever thought we knew about being parents and what the title of Mom and Dad truly meant.
At seven days old Noah was diagnosed with left optic nerve hypoplasia (blind in his left eye) and partial Agenesis of the Corpus Callosum (missing 90% of the structure of his brain that connects the two hemispheres together). We were devastated thinking this was the worst news we could have ever heard.
Today his one blind eye is the last thing we ever even think about in comparison to all the additional diagnosis and obstacles he has received since then. Included in this long list of diagnosis are Septo Optic Dysplasia (midline brain malformations), Infantile Spasms (catastrophic brain spams that kill parts of the brain), Epilepsy (seizures), Cortical Vision Impairment (his one good eye cannot communicate with his brain very well), Sandifers Syndrome (severe reflux), severe hypotonia (very low muscles tone), Dysphagia (100% fed through a feeding tube), silent aspiration (cannot swallow efficiently), Microcephaly (early skull closure and small head size), global developmental delay etc, etc, etc. Mix them all together and what do you get: a special needs child!
This one title can hit someone like a bag of rocks and bring pain and despair, or it can be the answer and key into a whole new world full of love, compassion, and blessings. We chose the latter option and have learned how to not only be Noah’s parents but put on many hats titled medical student, advocate, event planner, equipment manufacturer, fund raiser, insurance specialist, multiple “cause” promoter, and perfectionist at keeping everything organized, just to name a few.
We had to throw these new hats on and just dive in head first. We visited clinic after clinic and read more books, blogs, webpages, and forums than I can even count trying to find new therapy techniques to help Noah. He has over 17 different specialists on his list of doctors and with each doctor comes a whole crew of different therapists. Each team comes with multiple appointments and scheduled sessions and each session comes with stacks of paper work and homework to fit in the few remaining hours of our day. Over time the hats became too heavy and the traditional techniques were not helping our son improve. We were desperate and started to look for other options.
One of the most pivotal moments in our pursuit to help our son was the day we learned about Neuroworx. They had just started to take on pediatric patients but I knew from the first day we had our consult that this place was going to change our lives, change our sons future! When Noah first started with Neuroworx, at 18 months old, he was unable to even hold his head up fully. He couldn’t bring his hands to his mouth nor could he roll from one side to the next. His back would hunch over when we tried to prop him in a sitting position and if we were to even try to let go he would crash to the floor in seconds. He had zero core strength and zero desire to even want to try to learn anything new. He was “floppy” as his doctors would say. Unable to use any muscle or organ properly caused many emergency room visits and hospital stays. Therapy was torture for him. Before Neuroworx he would cry at any session we would bring him to.
Today Noah is a very happy 2.5 year old. He attends therapy at Neuroworx twice a week and I am happy to say that he is on his way to big things. He has gained 100% head control and his core strength has improved dramatically. He is able to bear weight through all four limbs which means he is not only standing with assistance but has begun to learn how to take a step here and there. He has gained enough strength and mobility through his shoulders, arms, and hands to be able to bring objects to his mouth and hold and shake a baby rattle which we were not sure he would ever do. He is no longer dead weight when we lift him as he can now crunch his abs and try to help wrap his legs around us for support. Noah has learned how to flip from stomach to back and vice versa and how to help pull himself forward wanting to get into a sitting position, which shows us that he has desire. A cognitive response that, once again, we were never sure we would see.
Not only have the physical changes been dramatic but other areas have come to life as well. He laughs and laughs while he is in the swimming pool at Neuroworx and he has learned how to make all kinds of new vocal sounds. Now that he can hold his head up, his vision has started to improve exponentially and he is recognizing certain things like our faces. What parent doesn’t love that!
He started on the Neuroworx Lokomat (the robot walking machine we call it) about 8 months ago and stemming from the progress he has made from this piece of equipment, Noah can now tolerate many other forms of therapy that we incorporate into his daily routines at home. Noah has started to taste food orally and just recently has gained enough strength in his throat to take a couple sips through a straw. He has been seizure and spasm free since a little before his first birthday and is off all seizure medications. Noah now sports some very cool blue “Harry Potter” style glasses which only adds to his lovable character. He adores his therapist at Neuroworx and I sometimes feel he would rather stay there with him then have me take him home after therapy. One of the major improvements is that Noah has not set foot through an ER door in over 7 months. The nurses might not be able to remember him enough to call out his name anymore. I can live with that!
Noah still has a very very long way to go but because of Neuroworx we as his parents have physical proof that he will eventually get there. There is a phrase parents in the special needs community use and it is “one inch stone at a time!” Noah may not be hitting the typical “milestones” but he for sure is hitting his Inch stones. This makes us very happy to see.
We as his parents have not let a single symptom or diagnosis stop us from continuing to do the things we always planned on doing with our son even before we knew he would have a different lifestyle than we had planned. Yes, we may have feeding tube equipment or special mobility devises or bags full of medication to take along with us but it is worth it for him and for us. Being the best parent you could possibly be is being the same parent you decided you were when you first found out you were pregnant. Special needs or not.
Parenting is hard for everyone no matter what obstacles you may run into. We have learned to keep our heads up high and proudly show off our special needs mom or dad badge. We give lots of hugs, kisses, and words of encouragement to our little Noah and try to prove to him daily that he can be just as positive and happy as we are. Isn’t that just called “parenting?”
In a few short weeks, Noah will become a big brother to two little sisters and we cannot wait to see all three of them grow and learn from one another. Noah is going to be an incredible influence and more importantly the happiest big brother anyone could ever hope for.
Neuroworx gave us our lives back, took the weight off our shoulders, and has picked us up on some of our darkest of days. The miracles we continue to witness at Neuroworx have made us true believers that one day Noah will be able to stand up, walk towards us, and wrap his arms around us for a long warm hug.
June 5, 2014
Postscript: Angie gave birth to adorable twin girls on July 25, 2014. All are healthy and well.
Miller, A 2014, 'WCF's Angie Miller's Experience with Neuroworx', WCF Newsletter, July 2014, pp. 11-14.
Noah working on the Lokomat alongside his parents at Neuroworx.
Neuroworx Physical Therapist, Rick Reigle, works in the specialized pools with Noah and other pediatric patients.