Keep moving

Today Ainsey Belle (one of her many nicknames) went back to school today.  She was glad to be back to school!  Ryan and I headed back to work and the word of the day was...numb.  Neither of us has slept much recently, so we are exhausted.   We are still processing all of this--we are trying to be positive, yet real.

Tonight after work I asked Ryan what would make him feel better and he said a steak...ok, that I can do!  So we headed to TX Road House.  Don't those rolls and cinnamon butter make the world right?  Ainsley discovered butter rolls and ranch dressing tonight--we let her live it up! 

I have emailed every doctor/support specialist that has worked with Ainsley to get their advice yesterday--I finally went to sleep last night at 12:15 am after I couldn't think of anyone else to email to get their medical advice :).  I also today to check on her CT scan, so hopefully I’ll hear back from them tomorrow.  We just want to know a ball park of when they will get her in…a day, week, month—knowing will make us feel better.

We noticed tonight that there are definitely times when Ainsley doesn’t respond to us and other times she does—we don’t know what to make of that.  We did start a new baby signing video tonight so Ryan and I learned:  thank you, I love you, thirsty, come here, stop, yes, no…know we just need to incorporate them with Ainsley.  She signed mom tonight—made my day!

We did make some good progress today—we’ve set up a lunch meeting with a campus colleague who has cochlear implants.  She is going to tell us about her experience and give us some advice!  Ainsley’s Deaf and Hard of Hearing teacher said she could also connect us to families in the community who have been through the cochlear process so we can hear their stories.  Our doctor who we value her opinion so much emailed us back to let us know she wants to refer Ainsley to the CDD (Center for Disease and Disability) to get a language specialist working with her. 

Good progress for day two—we’ll just keep plugging away at this!

I can't breathe

We took our baby girl in for a routine ear tube surgery and while she was under they were going to do a fourth ABR (Auditory Brain Response) hearing test since she has always had slight hearing loss since birth.

On our way to the hospital--a happy girl.

Fish tank in the waiting room!

One of my co-workers, Angie, and her sweet daughter stopped by to see Ainsley since they were at the hospital for a check-up.  The brought Ainsley a bear and balloon--both were a hit for Ainsley!

Our day.....8-10 am  Arrive at hospital, do all of the pre-surgery paperwork, consultations, etc.  10 am-12 noon  Ainsley was a part from us in surgery, hearing test and then in recovery.  

At 11 am the doctor met with Ryan and I and asked how we thought Ainsley hears….we give several examples of how when Ainsley responds to sound.  

He stopped us after about a minute and said, the tests today show a profound hearing loss, that she can’t hear most things.  

Dr. Smith keeps talking about a genetic condition, cochlear implant evaluations, CT scan, etc---I try not to keep it together, quickly grab a piece of paper and begin writing what he is saying.

He said that he wanted to do some blood work to see if Ainsley does have the genetic condition that he suspects, Pendred Syndrome.  He steps away to the phone to call the nurse to get the blood work from Ainsley and Ryan says to me, "are you ok", and I said, "I can't breathe".  I literally couldn't process what he was telling me.

The doctor said that he wanted to get blood from Ryan and I today as well to do the genetic testing, so we sign paperwork and around 12 noon are in a room getting blood drawn when they bring Ainsley to us.  We loved on her and tried to soak in the news.

We asked to talk with the audiologist who did the test in the operating room, so they paged her and we met with her--Sue.  She was wonderful in explaining how she tested the machines 4 times to make sure the results were accurate.  She said they were shocked too at the results and she talked with our audiologist and they said that despite the news we were receiving today, they said that Ainsley couldn't have better parents to see her through this.  That is when I first teared up for the day.  I don't think I've ever received a better compliment.  

I had to include this picture, because Ryan and I blissfully unaware at 10:10 am when to grab a diet coke in the cafe at the  hospital since we thought all was well.  They gave us a pager if they needed us.  Little did we know!

This was us after we gave blood and when Ainsley could begin eating.  One of Ryan's friends who he plays ball with over lunch works in the surgery unit, so he dropped by and offered to take our picture.  He didn't know the full extent of the news we received, so we said sure and smiled!

I have this chalkboard in my kitchen that my sister gave me.  When we have visitors, I normally write their name on it, but on Monday of this week I changed it to this verse--very fitting for today.

Little miss is doing well tonight--she ate well, had a nice warm bath and is sleeping now.

Next steps--get the CT done and a repeat hearing test asap--I hope they call this week to get her in!  Here is more info on the syndrome.  We are taking great strength from the sentence that says kids can rebound from this hearing loss, even though the doctor said it was not likely--our God can do great things, so that will be our prayer!

Pendred syndrome is a genetic disorder that causes early hearing loss in children. It also can affect the thyroid gland and sometimes may affect a person’s balance. The syndrome is named after Vaughan Pendred, the physician who first described individuals with the disorder.

Children who are born with Pendred syndrome may begin to lose their hearing at birth or by the time they are three years old. The hearing loss is progressive, which means that a child will have less hearing over time. Some individuals may become totally deaf.

The loss of hearing often happens suddenly and in stages. Sometimes, after a sudden decrease in hearing, a person’s hearing will nearly return to its previous level. Almost all people with Pendred syndrome have bilateral hearing loss, or hearing loss in both ears. The hearing loss often is greater in one ear than in the other.

Source:  http://www.nidcd.nih.gov/health/hearing/pages/pendred.aspx

New plan

Today we were scheduled for Ainsley sedated hearing test!  We were SO prepared!  Her bag was packed, comfy clothes on Ainsley and Ryan and I had taken the day off to care for her.

We arrived early and were ready to go! 

Little miss was a little hungry since she had to fast!

Fun games in the waiting area made the hunger go away!

After they checked Ainsley's vitals--they took us back to the consult room where they were going to give her the sedation before we went to the testing room.

When Dr. Smith checked her ears he found lots of fluid and no tubes....so he said, we have room to do her surgery (tubes) tomorrow.  And that was that.  No need to do the sedated ABR since it would not give us accurate results.  

Ryan and I were a little shocked by this new plan--so we adjusted, went back to work today to get things in order, and are all packed and ready to go tomorrow.   Ainsley will have her tube surgery at in the morning and then they will keep her sedated to do the ABR hearing test if all goes well with the tube surgery.  We are hoping to have clear results by tomorrow afternoon.  We fed little miss a BIG snack tonight of peanut butter and bananas, cereal, and milk so hopefully she won't be too hungry tomorrow morning!