Yesterday was a day of mixed feelings. Bob and I had been invited by a work associate to go to a Mariners game and enjoy it from a suite right behind home plate. We had planned on going, but when the only hearing appt available for Nate was yesterday, we thought we better make him a priority (even though we could really use the connection time). When I shared this with my mom and my dear friend, Ginger, they both jumped at the chance to help out. My mom took Nate to his hearing test and Ginger watched after Cody.
So, Bob and I had a great time while Mom went to Doernbecker Children's Hospital. Nate could not have any formula after 8:30am and the appt was at 2:30, so Mom had her work cut out for her. He was not happy about being deprived (even though I got him up early to make sure he was able to eat at 5 and 8). When they arrived at the hospital, they put numbing cream on Nate's hands and legs. After that took effect, they tried desperately to get an IV in him. Mom had to hold down his arms while the doctor and nurse worked to get in into his legs. They almost had to put it in his HEAD, but finally were able to get it in one foot. So, they sedated him, my mom held his hands and rubbed his head and he went off to dreamland.
The test was 2 hours long and DID NOT GIVE US A DEFINITIVE ANSWER on Nate's hearing. UGH, UGH, UGH! Are you kidding me? This is so ridiculous! This is so frustrating! We think the next hearing test should be free (yesterday's will cost about $2500 because of the sedation). We do know pretty certainly that he does have at least moderate hearing loss in both ears, but one may be worse than that. They just can't get a good read on his left ear because the canal is so small. They even used preemie devices to test, but that didn't even help. So, now we need to go to a pediatric ENT (ear, nose and throat) Doctor, get a plan devised with her and likely have another sedated test (cha-ching). We will then get fitted for hearing aids (cha-ching, cha-ching) and will begin speech therapy (cha-ching)....
I'm noting the cost of all of this because it is overwhelming and frustrating. God is being amazing in providing for us right now, but what if that were not the case. How do people do this??? Hearing aids generally cost $2000-$3000 and have to be replaced and changed. Speech therapy is definitely a must and is not covered by insurance and costs about $125/$150 for each weekly session. Our system is just not set up to help families with special needs.
I'm beginning to understand why so many other parents of children with DS have used the term advocate when describing their role. I think I'm going to have to learn this role very quickly.