Wednesday, September 23, 2015

Special Ears Part Two

Today marks one week since we found out our little twinnies need hearing aids.  I'm happy to say lots of progress has been made in getting their hearing aids and appropiate therapy to help them talk. I'm going to be brutally honest though with typing up this post.  Maybe it will help someone else. One thing I discovered in this journey to new ears is that it's an expensive indevor. There were a murad of emotions this last week but all of that was clouded by the cost factor.  I've also discovered that either insurance doesn't cover it at all or they pay very little. Unfortunately living in Texas didn't let us use TEFRA because it isn't available. All we have is TEDHI which is our states resource to help facility's record when children do have hearing loss OR identify risks so children can be tested sooner or monitored for hearing loss. Through TEDHI I discovered that our twins had some risks the hospital never informed us of. If we had known we would have had them tested sooner and they could have had the aids this whole time.  The good news is the director of TEDHI was able to contact our delivering hospital and give them proper information so maybe another family can have their child tested sooner and know that risks that are possible. I have to give a huge thanks to Doug Dittfurth because he was caring and very imformative  TEDHI also made a suggestion to call ECI and the school district. We have been working with ECI since the beginning of August and they have made contact with the school districts audiology department to get additional audiology help. After discovering all that information we needed to start the process of getting the aids. Thankfully our insurance covers a little but do you have any idea what ONE hearing aid cost (and this is for one without a ton of bells and whistles)? It's $1500 an EAR and in our case times FOUR! Friends that is $6000. We were so shocked!!! I share this so if you are reading this and your child needs an aid you aren't shell shocked when the doctors office tells you this. To top it all off our Audiologist doesn't file with insurance. We discussed going with an in network audiologist but we trust this team because they put in my MIL's cochlear implant and they work with top products. My MIL bought an aid one time from another facility that gave her fits. She moved to this facility and they couldn't even find the aid she was sold. It was a $7000 piece of junk! In this case it's so critical for the twins to talk and not have any further delays. So we decided you get what you pay for sometimes so we are staying and will file ourselves. Thankfully we were able to order their aids and they should be ready by their October post opt visit. Their aids will be by Phonak and are the sky Q. We were able to order them in colors (to identify easily with twins) as well as the ear insert mold will be specific colors. I'm just ready for all the logistics to be done so we can focus on the true matter at heart... My twins being able to hear clearly and hear our voices. 

This last week we tried to find the silver linings and focus on those...
They CAN hear it's just muffled 
They are here and we get to love on them every moment of every day.. I read a Facebook wall with a mother who delivered a still born baby and that puts everything into prospective. 
We have the resources to help them hear and learn
We have an amazing God who will take care of our needs as long as we have faith 

Well that is an update. If you have time say a little prayer as Brennen has thumb surgery on Oct 2nd. 

Here are their aids. 

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). 

Thursday, September 3, 2015

Major catchup

Summer flew!! We were so incredibly busy that we blinked and summer was over! I'll try to bullet point some things to catch up:

~ Britney and Brady took a karate homeschool summer class and loved it!! Britney gets to continue this fall and spring. I feel bad because Brady had to go back to school and won't be continuing until next summer. He is finishing his last elementary year and will transition into homeschool next year. Ben tried to do karate but there was just to much for him to handle sensory wise and he opted to not do it after he went to the first class. Brit also did a social art class with 10 other girls for 8 weeks. 

~ this summer we also tackled a very hard emotional diagnosis. We finally have it confirmed Ben has high functioning autism. On one hand it makes us sad but on the other we have always known he was on the spectrum somewhere so it's a relief to know. Now we can make sure he has services at school/privately to help him be his best. He is the most amazing child and he has probably taught me more than I've taught him. 

~ I spent some of the summer planning my inlaws 50th wedding anniversary! They didn't want anything to big do we opted to host a luncheon with their best friends. It was so fun to plan! I'll put up pictures of that in a seperate post. 

~ I also spent the summer planning Brit's seventh grade homeschool year, attending some homeschooled leadership meetings, and a workshop. 

~ Riley and I took the older kids to Great Wolf Lodge for a mini vacation. The twins stayed with granny and papa so we could focus on the older kids. We had so much fun!! 

~ Brady and Ben started school. Brady is in fifth and Ben is in second! Britney started seventh at home. 

~ The twins started speech. They aren't talking and have to go for a sedated hearing test next Friday. I took them to a hearing specialist in Dallas that put in my mil's cochlear implant. Since she has an implant and their great great paternal grandparents were both deaf we decided it was worth making sure they can hear fully. We tried the booth but they were just to little to coorporate. Barrett does not turn his head when you call his name or respond to loud noise or any noises really so I'm worried. 

~ Brennen saw an orthopedic hand surgeon and will have surgery in Oct. He developed a trigger thumb right before his 2nd birthday and it did not fix itself. I'm so sad he will have to be put under again for this. 

~ homeschool is going amazing! She is doing math, grammar, reading, Latin into to Spanish, art history, choir at a fine arts academy, karate & typing. We start at 8 and finish core subjects around 11. She gets a big break plus lunch and then works 1-3 except for Monday's since choir doesn't get out until 2:30. We don't homeschool on Fridays. I think she has learned more in the two weeks we've been schooling than all last year and the biggest thing.... She is smiling and happy! Which means I'm smiling and happy!!! 

Now for some pictures!