We started this blog over two years ago in attempts to keep friends and family updated regarding Brody before he was born. We had intended to keep it going regularly, but fast forward to NICU life, difficulties eating with a cleft palate, his first trip to Delaware, serial casting for his club feet, followed by a tenotomy and well, there goes the rest of 2015. I just realized we had zero entries for 2016. Oops. Well, thats life with a newborn who won't sleep through the night for a year and two full-time working parents.
Fast forward to the end of March 2017. Brody had his second birthday party earlier this month, a firetruck theme with many friends and family who traveled from all over Kansas to attend. He is adapting well to his body cast that he had placed in February during our fourth trip to A.I. duPont Hospital for Children in Wilmington, Delaware. He is butt scooting all over the place, pulling to stand, walking with (lots of) assistance, and has full blown toddler 'tude. It is great seeing him get around to explore on his own. Most parents of toddlers wish for their child to be less mobile so they won't get into everything. But what they don't realize is the boredom and frustration which result from that lack of independence.
During our trip to Delaware last month for Brody's body casting, they rechecked his hearing for the first time since having his cleft palate repair and ear tube placement last September. He has never officially passed a hearing test, but always responds appropriately, so we (his family as well as healthcare team) had assumed the failed hearing tests were a result of fluid in the ears prior to getting the tubes placed and cleft repaired. The good news at our visit was the tubes are open, there was no fluid, and his cleft has repaired perfectly without need for further surgery. The downside was, he still has a mild conductive hearing loss which didn't improve despite the excellent result from the cleft repair and tube placement. This is not uncommon with diastrophic dysplasia. Our Delaware team recommended we establish care with a local ENT back home to get the ball rolling on hearing aids. So, with the help of our phenomenal pediatrician, we got this set up right away. We saw a local ENT last week who specializes in children with hearing loss. He was very optimistic that Brody has very mild hearing loss and seemed hopeful the hearing aids will not be a forever "accessory." We started the process of picking out the colors of his hearing aid and band, and will get them in a few weeks. Brody will be using a soft band BAHA (bone anchored hearing aid). This is a device that is literally attached to a soft headband that can be taken on and off. He will wear this in addition to his cervical collar, body cast, and AFO's (his boots). That is ALOT of gear for one kid to wear (and for us to keep track of). I'm sure there will be an adjustment period after he starts wearing the hearing aid, but we are very hopeful it will improve his speech, which is significantly delayed. It's frustrating enough for Brody that he can't reach or get to what he wants most the time; the fact that I can't understand him makes him even more angry. Once he gets the hearing aid, we will be getting more aggressive with his speech therapy.
Whew. So that's where the last two years (and all our money- HA!) went. We are now preparing to go back to Delaware again in a month for his body cast change. This summer we are looking forward to attending our first national convention of Little People of America in Denver. We are excited to meet many of the friends we have made in our LP community in person, and for a VACATION!
