Friday, September 18, 2015

Special Ears

I know I haven't posted the party pictures yet. I simply haven't had a chance. I will though soon!!

It's a Friday night and oh how I've looked forward to a down evening with no homework, next day preparations or rushing. This week was a doozy and kind of rocked our world. Wednesday the world kind of stopped for a bit and since then has been a whirl wind of emotions, googling, phone calls, stress, and if I'm honest a few tears. I need to back up to go forward. So back in May at the twins well visit their speech was a hot topic. Having two others in past speech we tried to apply everything we learned with the twins. Still they just babbled and no "simple" words like mama or dada. We noticed they didn't flinch with loud sounds or even turn their heads when you called them. When you talked to them they really liked making eye contact and would follow your motions with their eyes with slight hesitancy. Looking back I realize so much. We just knew they were on the cusp of talking. My pediatrian said, "Kriss if they aren't talking in a month you need to call ECI." Knowing how ECI works and taking some advice from a friend (whose son is in ECI and speech too) she encouraged us not to wait. That's advice I'm now so greatful for. We set up an evaluation but it was a month wait. While we waited I was able to schedule a hearing test in Dallas which the specialist who put in my mil's cochlear. I knew they prob wouldn't handle a hearing booth but we had to try that first. Sure enough the specialist recommended we do a sedated hearing test (ABR). She didn't see any fluid in their ears during the visit and their tempanagram was fine (ear drum was functioning as normal). So we scheduled the hearing test and it was Wednesday. The procedure is two hours long with a two hour recovery. They took Barrett back first and when he came out we learned he had high pitch nerve damage hearing loss. I was not expecting that and it was heart breaking to learn your child has a hearing problem. He will need hearing aids. Then they took Brennen back and after two hours the specialist comes in to check on Barrett and then starts saying "they" this and "they" that. I said, "They both have it don't they?" She said, "Yes they both have the exact same thing and the frequencies are almost exact." I said, "Wow they take being identical seriously." So Brennen will need hearing aids too, on one hand I'm happy they will be able to go through this together and on the other hand I'm so sad they have to endure hearing loss at all. While they were under anesthesia they took molds of their ears and prob sometime around October 12th they will be fitted for the aids. Once I had a few hours to digest this news I felt better knowing they weren't deaf (their paternal great great grandparents were deaf) and they can hear it's just very muffled like being underwater. I can't wait for them to be able to hear our true voices in a few weeks. Hearing aids sound simple enough until you find out the cost. Then the stress sets in because they average $1500-3000 PER EAR! So that's roughly $6,000-12,000. Thankfully our insurance will pay 85% up to a $1500 max but the office doesn't file the claims. You have to pay upfront and submit for reimbursement. Fun fun! So we have three weeks to figure out how this is all going to financially play out. I know though that the lord will provide but talk about stressful!! 
I was able to call our ECI person and get a referral for the school district to get their audiology team to work with them as well. I also spoke with TEDHI and they are getting us some resources. I won't lie this is so overwhelming. Yet at the same time there is so much to be thankful for!! Now I just need a money tree!! :)

Brennen and Barrett with their granny. She help keep them calm while I filled out paperwork & talked to doctors/nurses. 

Brennen waiting him turn! It's hard to keep a two year old entertained for two hours in a small curtained room! 

Sorry about the hand but I love this picture. He was coming out of anesthesia and was comfy so I didn't mess with him. Live his little face here (Barrett). 

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