Brayden became a whole new different baby after surgery, more alert and more interactive, so I knew that I had made the right decision.
The first year, absolutely the most difficult year of my life ever!! We battled doctors, switched doctors, moved half-way across the country to South Carolina, started early intervention, and started some serious research efforts. There were no answers, everything was so very unknown and that was the worst. But there were so many wonderful things that first year too! Brayden's life, was ultimately the best, and personally I overcame such huge amounts of guilt and grief, finding myself able to enjoy him. The first few months, I cried more than I probably had in my entire life... it was nonstop, over the clothes he would never wear, the things he would never do, the places he would never see.
The battle continued, every single day was a battle. Getting people in the medical community to be optimistic, finding people who even knew what hydranencephaly was, losing friends and family who just weren't sure how to act or what to say... holidays were weird for everyone involved, I always felt like Brayden was kind of excluded only because he wasn't supposed to be and he wasn't exactly developmentally in line. Gift-giving was hard...
That all got easier, most of those feelings were likely my own insecurities. In fact, after going against much criticism and putting Brayden's life details out for the public to share in, he had love and support from people we will never meet. Through all of the love and support, Brayden celebrated his first birthday!
Then his second birthday!!
And now even a third birthday!!
We have have been so fortunate to not have faced many obstacles. Don't get me wrong, to the average parent they may seem like devastating circumstances, but to me they're just life as we know it. After a short stint when he was about 4 months old with the antiseizure drug Phenobarbitol, for eye-flittering, it was determined that this flittering was not seizures rather weakened eye muscles which brought him his first pair of infamous spectacles to also help with a severe astigmatism.
Eating has always been a bit of an issue, mostly because the doctors were so set on him needing a feeding tube that they would not help me help him to eat. Thankfully for an amazing occupational therapist, Courtney Jerrard, we worked past those through therapy exercises and a transfer from a bottle to a cup. Now, Brayden loves his food, but not from a lack of trying to give him the nutrition and fluid intake he needs to stay healthy in the amount of food he does eat.
In July of 2010, Brayden had his first hospital stay while we were on vacation visiting our family in Missouri, prompting his diagnosis with Reactive Airway Disease. This was the hardest obstacle to face since the shunt surgery, watching him choke and not be able to breathe was gut-wrenching...his sweet smile replaced by blue lips, beyond scary! After that diagnosis, it actually took a few doctor visits to finally get the equipment at home that we needed to prevent future hospital stays. Respiratory issues remain one of his biggest problems, though we are able to wade through them much smoothly with a home nebulizer and pulse oximeter at home.
Doing extensive research on hydranencephaly is a blessing and a curse all in one. A blessing since I know what to expect, yet a curse since I also worry more than I could. Yet this research, along with the help and guidance of my "hydran-family", has helped Brayden reach the best quality of life possible in a world that wouldn't even lift a finger to help him achieve that. We joined the other little miracles in battling constipation issues, that had actually existed his entire life but went untreated and undiagnosed until he was 2 years old. His second year also brought a formal diagnosis of focal complex seizures and severe mixed spastic quadreplegia cerebral palsy. In a flurry of seizures, which proved him to be in status epilepticus in April of 2011, we also added on tonic-clonic seizures and the Lennox-Gestault diagnosis was tossed around but not written.
His next hospital stay is a planned one, for adductor tendon release surgery on August 1st to hopefully prevent his hips from becoming completely dislocated and causing pain. Surgeries are always scary, even more so with a little life that is already teetering on the edge.
Despite all odds against him, Brayden inspires and motivates everyone who knows him to be a better person. He has friends near and far, his smile lures them in with its irresistability. He continues to have physical and occupational therapies, even starting preschool in February 2011... which was never a reality for me, to be sending him to school.
He has explored more of US than many other 3 year olds... visiting family in Maine, Connecticut, Wisconsin, Missouri... living in Missouri, South Carolina, and Virginia. He has gone hiking up to water falls, rock climbing over streams, strolled around Washington D.C., chased his sisters around amusement parks, bathed on beaches, splashed in the ocean, spent hours watching fish in the aquariums, been in awe over blooms through botanical gardens, stumbled upon alligators in the swamp lands... he's done so much and will always do everything we do.
In between the fun, he endures doctors visits weekly, a mommy who feeds him weird things to hopefully keep him healthier (I'm all about alternative medicine and holistics over pharmaceutical/medical interventions), nasty comments and stares from ignorant people, occasional hospital stays, and manages to smile through it all. Though it is likely he is simply not aware of the difficulties he faces, he is completely aware of the love and support he has... he proves that by being a spoiled rotten momma's boy!
He also possesses the greatest amount of motivation I have ever seen in a child. Though he cannot walk, or even sit unassisted for long periods of time, that doesn't stop him from trying.
He cannot talk, but is learning to sign "more" "eat" "drink" and some others, and will "tell" you that he doesn't like something... He communicates via a switch at school, a skill he hasn't mastered but is making obvious progress. He doesn't always see well, but he always recognizes those faces, places, and things he loves...
Every second of every day is a moment we were not supposed to share, thankfully we've been able to enjoy them together. Though his prognosis never changes, he no longer hangs on to a medically subjected expiration date. He breathes, he eats, he laughs, he loves, and ultimately he LIVES. And his little life will touch others as long as he is on earth... even well beyond, through this foundation in his honor.