After a completely normal pregnancy, Deacon was born on February 12, 2010 weighing a whopping 9lbs. 5 oz. The first 9 months were filled with celebrations of on track developmental milestones, and even some early ones like walking by 9 months.
At about 10 months I started to notice some lack of interaction with toys and people. At 11 months (Jan. 2011), we changed daycares and they noticed too, along with quick "head-drops" throughout the day. After a visit to the pediatrician, followed by lots of neurologist and therapist appointments, EEGs, MRIs, eye doctor appointments we were given a variety of diagnosis. Initially we were told Infantile Spasms, Cortical Visual Impairment (legally blind), and possibly Autism. Due to his vision problems, he was also delayed in his fine motor skills and social interaction.
Thankfully our wonderful neurologist ruled out Infantile Spasms. We haven't been given a specific label to put on his form of epilepsy, but they consist of myoclonic seizures and spasms. He is now on Valproic Acid (Topamax was successful too, but resulted in language delay). Visible seizures have been well-controlled through medication since he was 15 months.
His visual impairment has significantly improved to the point that it is hard for strangers or even those that see him daily to detect any vision problems.
Deacon is such a delightful, smiley guy. His fine motor skills have improved, as well as eye contact and interaction. I still spend many nights stressing about what the future holds for him. At his two year evaluation, Deacon's language/communication was at the level of a 4-8 month old, which means he can't follow simple commands, label people or objects (like "where's mama?"), or make more than a couple of babble sounds. His imaginative play was also non-existent, but he loves music, bouncing on the trampoline, and soft toys.
At 27 months, we finally met with doctors at Texas Children's, where he was given a formal autism diagnosis. While this "label" was a definite set back, it was also a HUGE blessing in disguise. With this we were able to have more therapy coverage through our insurance, especially for ABA and speech therapy. He attends therapy five days a week and in five months he has made giant leaps in milestones. At 34 months he sleeps in a toddler bed, can feed himself with a spoon, signs for "eat," can say "more," plays with a larger variety of toys, gives kisses, enjoys our company/seeks interaction, understands "bath," "out" (for outside), "let's go bye-bye," "up, up" (to be picked up) and "time for night-night."
Through Deacon our family has learned to appreciate each moment, celebrate every accomplishment no matter how small, love each other with all we have, especially on those sucky days, and most importantly, trust in God.
1 week ago