Thursday, January 29, 2009

Anchorage

We made another long trek to Anchorage late Tuesday night.  We picked Doug up at work and arrived in Anchorage around 11:00 pm.  I read Twilight out loud to him the whole drive, so it went pretty quickly (I read it out loud the whole way back too and now my mouth is very tired). 
 
I like to use Priceline to play "Let's make a Deal" for my hotel rooms.  I was horrified to find out we were staying at the same hotel where we lost Nolan.  I didn't sleep much Monday night as I dreamt he was lost for good this time.  I'll save you the worry as you read the rest: Nolan was never lost.

When we arrived at the hotel, we found our room and made several trips bringing in children and luggage.  Brenden immediately fell back to sleep, Ethan needed a midnight snack (you would have thought he hadn't eaten a thing all day!), but Nolan was wide awake.  I think he might have finally fallen asleep at 12:30 or so.

Brenden had his first appointment at 10:00, so Doug dropped us off and drove through Anchorage with the little boys.  Brenden did well, but was being a little silly.  There weren't many changes to his implant maps (programs) and we were in and out before his appointment time was up.  I called Doug, summoning the next child.

I exchanged Brenden for Ethan and took him to his appointment.  I'll spare you all of the details, but Ethan now needs a hearing aid in his right ear and needed to increase the levels of his left aid.  His OAEs were absent in both ears, which indicates hearing loss with a normal tympanogram.  He wasn't very cooperative, so we have to go back within the next 1-2 months.  It was approaching nap time, so I can't blame the kid - I had just hoped we could get more out of his $260 appointment.

We went to lunch to give everyone a break and then to Target - oh, how I miss Target.  Brenden had a little mishap which needed to be remedied, but other than that, it was a painfully delightful trip to the store.  It seems everything in the toy department was on clearance, so Brenden had a difficult time deciding on what to get Nolan for his birthday with mom allowing him so many choices.  I was lucky Doug stayed in the car - he is a sucker for clearance toys.  In the end, Brenden insisted on a toy not on clearance that we also could have gotten here at Fred Meyer, but it was within budget and an addition to an existing set we own, so I allowed it.  I think the actual insistance was that HE wanted it, but it would pass nicely as a toy for his brother.

Back to the audiologist.  Brenden had a full afternoon of difficult testing with his hearing aid to qualify him for a second cochlear implant.  The audiologist had warned us that during this testing, even some adults just shut down and can't function.  We promised him that if he worked hard and wasn't too silly, he could get his very own dessert at dinner and he wouldn't even have to share.  He was amazing.  The audiologist did several tests with only his implant, only his hearing aid, and both.  An hour later, she told me Brenden passed with flying colors and he didn't qualify.  I stopped her right there and said, "You didn't test him with sentences; that is where he will fail."  She seemed surprised and pulled out the other tests, usually reserved for adults.  Sure enough, Brenden failed with flying colors, so we started making plans.  I wanted to go back to SLC for the surgery, but she said that they might not accept the tests and need to redo them (more money, more time, and more trips), but she could understand why we wanted to do that.  In the end, we decided we would do it in Seattle.  In SLC, they only do the surgery once a month at the children's hospital, so it would be scheduled a long time out.  In Seattle, they do the surgery every day, so they are experts and the wait wouldn't be so long.  They can do the surgery in 30 minutes!  Brenden's last one was an hour and fifteen minutes and that was considered short.  In Seattle, they also do the incision different, so he wouldn't have the scars like he has on his head right now and the best part: they could activate his new implant on our way back to Nikiski flying from Seattle!  The last one, we had to wait 6 weeks to have activated for fear the magnet would be pulled back through the incision.  The second implant will require a lot of work on Brenden's part and will be very time consuming and difficult, but I think it will be more than worth it in the end.  Running total so far: $815

During Brenden's appointment, I could hear Doug and the other boys in the hall.  Nolan was having an appointment during the same time as Brenden's.  I was still sitting in the room with Brenden's audiologist when Nolan's audiologist delivered him to me.  I said, in a joking tone, "Please tell me he's fine."  She said, "Actually, I'm not sure."  His right ear had absent OAEs and she was "alarmed" by that.  She suspects a mild high frequency loss at this point.  I was utterly shocked.  Final total: $1010 (+ hotel, gas, and 2 restaurants)

When I found out Brenden had hearing loss, I grieved.  At first, I was fine with it.  I had suspected it for a long time and it was only confirmed.  But as I was alone in my mom's house for the next week (she was in Cancun and I was dogsitting and business-watching for her), I had time to think.  I wondered if he ever heard the stories I had been reading to him since he was 2 weeks old.  I wondered if he had heard me tell him how much I loved him.  I wondered how he, as a husband, will fall asleep next to his wife someday unable to have the "pillow talk" I take for granted each night.  I was immediately on the internet searching for ways to learn ASL.  I was so frustrated to discover that all of the children's signing videos on the market are intended for hearing children to learn the new trend of signing with your baby.  I didn't want to part of a trend!  I wasn't doing it for that.  I blamed myself - I went through my pregnancy week by week trying to figure out what I had done wrong.

I have never ever said, "Why me?"  That just doesn't seem fair - why not me?  Why would I want that for someone else?  I am just glad not to be the mother of any one of the thousands of sick children at Primary Children's - if nothing else, Brenden's deafness has taught me that.  I am grateful for my healthy, although deaf, children.

We had ABRs, MRIs, OAEs, and other random acronyms being performed and thrown at us.  It all seems like a blur now.  Doug had to miss most of it because he was in his first months of pharmacy school, but I was finally the stay at home mom I had always wanted to be, so I was able to make the trip to SLC several times a month for all of the appointments.

I eventually learned acceptance and we got into a routine.  I still have pains sometimes when I see Brenden misunderstanding and knowing that if he could hear, things would be different.  I have gained wonderful friends through the experience, who know and understand what I have been through.

When Ethan was born, for some reason I just knew.  Maybe it was the fact that he looks so much like Brenden, but since he was tiny, I have been telling his pediatrician that I was sure that, even though he was passing his every 3 month hearing screening, he couldn't hear.  I was right.  I grieved briefly, but Doug reminded me: We did it once and we can do it again.

My point is: I was so unprepared this time.  Nolan has always been the hearing one.  He was tested at birth, 3, 6, 9, 12, and 18 months.  I am still hoping for a fluke, but his tympanogram was normal and his OAEs were absent, so I know that audiologically, there is likely something wrong.  

I only cried briefly yesterday.  I just wanted to go back to SLC with our audiologist Cache who knows all about Brenden and his hearing loss and has seen him since before his cochlear implant.  Cache knows all of the tests Brenden is capable of, so that part of the day would have been so much easier, but Cache has also known us since our family only had Brenden in it.  He has seen us grow and has been with us through every new change in our lives.  He was with Brenden during his surgery and delivered the good news that it was over and had gone well.  Cache has always been my constant in my life of ever changing variables.  I know he would have pushed a little harder to get the results that he wanted from all of the boys' testing.  I know he would have known what to do and delivered it in a way that made me feel like everything was going to turn out the best he knew how.

As for Nolan: I will do some follow-up with the audiologist in Soldotna (you know, the one I am not fond of...) soon and I will have a better idea.  Nolan was so tired after his long day of waiting in the car for the other boys after being up so late the night before, but he did as well as a very tired 2 year old can.  We will try to catch him fresh in the morning this time and get a good idea of what we're looking at and where we're going with it.

7 comments:

Sandi said...

Oh my gosh, I'm sorry to hear about Nolan. If I didn't know anything else about your family I would say that you are so strong and capable of doing hard things. I know you'll all be blessed for that! Hang in there.

Kristen said...

Erin I am sorry to hear about Nolan's possible hearing loss. I can't imagine what you must be feeling. I must say though that Doug is right, you've managed to get this far, you'll make it through this too. You are so strong and such an excellent mother, hang in there we're all here for you!

Nolo and Lauren said...

Erin... I'm so sorry to hear about this. I just think back to when we took sign language from Sis. Stine. Ironic I suppose. Thankfully you do have healthy, active kids. Also, when are you going to Seattle? We'll be back up there in March as well as tomorrow.

Amber said...

Oh, Erin. My heart aches for you. I remember when Mary told me Andi's test results from her ABR. I started bawling. I couldn't control it. She was 2 weeks old and perfect. How could she not be perfect?
You are such a strong person. I have always admired you because you take such an assertive attitude toward everything. When I start getting down because I just moved to a new place with a new life and no friends, I think about you in Alaska, working your tail off shuffling kids to Anchorage and having to teach stuff to your medical professionals about hearing stuff.
You have done a great job with Brendan,(and Nolan and Ethan)and they are lucky to have you as a mom.

The Boehme Family said...

Thank you for all of your kind comments.

Lauren, we don't know for sure when we will be going, but spring break (middle of march) is being considered.

Kathryn said...

Erin, we are saddened to hear about Nolan, and we offer whatever support we can provide. Sometimes the hardships in life can seem overwhelming. But one thing we know is that you are the best possible parents for these darling boys, and they will grow up with that edge over all their peers. We love you.

JoLynne said...

Erin,
There is one person who knows exactly how you feel, and that is Doug. Hang on to each other through all of your pain.