What a difference a year makes

When I look back at my blog over the last year, I realize how much fear I had when I found out Noah's hearing had decreased to a level of deafness.  I can scarcely remember those days without my eyes brimming with tears.  It was, hands down, the hardest period of my life thus far.  The biggest and hardest part was just NOT knowing what the future would hold.  The unknown is scary.  Well, I feel compelled to write again today because I hope that someday the parent of a newly diagnosed deaf child can read this and see the growth and transformation a year can make.  In the course of the last year, Noah went from having a mild hearing loss in his L ear and no loss in his R ear to a profound loss in his L ear and a severe loss in his R ear.  We have gotten hearing aids, a cochlear implant, started preschool, continued with intense speech therapy, are learning a new language (ASL) and had another palate surgery.  It's been a lot.  An overwhelming amount actually.  BUT, I've accepted it.  I've come to terms with it.  I've embraced it.  Don't get me wrong. There are still times that it hits me like a ton of bricks, but those times are fewer and further between.  But then there are those times that I see Luke and Noah whispering to one another as they play Legos and I'm so overcome with gratitude that I can barely stand it.

I met with Noah's speech therapist last week to discuss where he's at, where he needs to go and how we're going to get him there.  Noah's annual IEP is coming up in May so I wanted the latest numbers fresh in my mind.  Our end goal is and always has been that Noah will mainstream with the rest of his peers into Kindergarten.  Accommodations will need to be made, but that he will enter the same Kinder that Luke did and continue thorough there.  I know that this is going to come across as 'braggy' but it's my blog, so who cares.... Noah's auditory, articulation and speech is all WITHIN NORMAL LIMITS for a typical hearing child of his age.  I'm just so proud of him that I could cry.  He has worked so very hard and all his hard work is paying off.  So much so, that his speech therapist said that if next year was the year for him to enter Kinder, she would recommend mainstreaming!  And Noah has a whole more year of preschool!  

So, if you stumbled across my blog somehow and you just found out that your child is deaf....I hope that by reading this you can get a picture of the amazing things that your child can do.  The fact that the grief, sadness and despair that you feel is normal, but I promise you those feelings will be replaced with joy, admiration and hope.  I promise.  It's hard, but you'll get there.  Feel free to email me if you want to talk to someone who understands.  

Hope for the future

We went to a wedding this weekend.  It was JK's cousin's daughter on his Mom's side (got that?).  As we sat down, the lady behind me said, "He's has a cochlear implant" about Noah.  I turned around and smiled and saw the cutest 17 year old girl sitting next to her.  The Mom then proceeds to tell me, "She is bilaterally implanted".  The girl pulled back her hair and I saw N5's on her ears.  Noah was overjoyed and kept saying, "She matches me".  We chatted with the girl for a bit (and JK's 17 year old 1/2 brother chatted her up quite a bit!) and were amazed at the clarity of her speech.  Later that night, JK whispers to me, "Did you hear how good her speech was?" and I had to laugh because that was the first thing I noticed as well.  Instances like this are what give me hope.  Hope that all this speech therapy, appointments and so forth will pay off and Noah will be a 17 year old who has perfect speech and needed minimal accommodations in school.  More about the wedding itself later when LeAnn gets me some photos!

CI updates

Noah has been moving through his CI programs like a champ!  My fears that he wouldn't want to wear the CI were unfounded.  He asks to have it put on in the mornings and will disconnect it when the magnet falls off.  I suppose I was naive in thinking the magnet would occasionally fall off......that thing is reconnected 50 times a day!

I have noticed that Noah used a plural "s" spontaneously the other day!  I about cried with happiness.  We were folding laundry and one of his shirts came out and he said, "That's Noah's shirt".  He had the final /s/ sound on both that's and Noah's!  SO very exciting! 

We head back to Stanford this week for our next mapping.  

Luke has to be the best big brother ever!  People do stare and look at Noah and if anyone asks, Luke is quick to jump in with "This is my brother's cochlear implant processor.  It's held to his head by a magnet and it helps him hear".  It's so precious. 

ACTIVATION

Last Friday, we headed up to Stanford for Noah's CI activation.  Since Noah deafened postlingually, he had already had a significant amount of access to sound.  Also, he does wear a hearing aid in his R ear, which provides him  access to sound that way, so his activation was pretty underwhelming.  It was not similar to the activations that you see on TV where the child hears sound for the first time ever.  

Noah playing the audiology "games" while they test his CI for the first time

It was switched on and JK and I were taught how to use the device, which took the majority of the time.  For those of you not versed in the CI world, Noah's implant will be gradually turned up over the course of the next 6 months.  On his CI there are "programs" and he is currently on Program 1.  We will move him up through programs over the next two weeks.  At that time, it's back to the Audiologist for a mapping to build new programs.

On a quick side note...we got the results of Noah's Exome testing....normal.  I don't think that we will ever know the reason for Noah's hearing loss and cleft palate.  And really, at this point, what does it matter?  I understand that nothing will restore Noah's hearing, but I do feel it's important for Noah, Luke, Wyatt, Cayden, Aubrey, Kyle, Kohl, LeAnn and Nic to know.  For them to be aware of potential genetic changes that their offspring may have.  

Thus far, Noah (as always) has been a trooper.  He keeps his CI on asks for help when the coil falls off of his head.  I am SHOCKED at how easily the coil falls off.  There are different magnet strengths and we will discuss that when we go back in two weeks.  

I have noticed that now when we are out and about, people take a long look at Noah.  I can see their confusion as they try and process what it is on his head.  A few have even asked.  It doesn't offend me in anyway and I enjoy being able to share with them what a miraculous piece of technology it is. I do get teary eyed when I think of how thankful I am for this amazing technology.  It's simply amazing and life changing for Noah.  I'm so thankful that he has an opportunity to experience sound again.

Noah's Cochlear Implant--with a Finn McMissile cover

The BIG day!

It's here and gone.....Noah's surgery went FABULOUSLY!  I don't think we could have asked for a better experience.  

We got to the hospital at 6:00 am and Noah was a bundle of energy.  We explained to him what was going to happen and I think he understood as much as a 3.5 year old can.  

Ready to go!  My precious little man. 

Surgery took about 4 hours.  Dr. Oghalai called us back and told us right off, "Everything went perfectly.  Noah's surgery was routine and the electrodes were showing nerve response, which is a good prognostic indicator of success".  I didn't realize until after we talked with him, how relieved I was for that part of it to be over!

In recovery.  Notice that Curious George also has a cochlear implant!

We waited for another 2 hours in recovery for Noah to wake up.  He was groggy and out of it, but HATED having the wrap on his head and the IV in his arm.  For a while, he had to wear the "no-no's" because he kept clawing at his incision site.  

The doctor did such a great job with Noah's incision and they shaved only a very small portion of hair

Just a few hours later, he was back to his normal self.  He took full advantage of the food situation and ordered a steak, green beans, french fries and of course....chocolate milk. 

Can't believe this little man just had surgery!?

Sleeping was hard fought that night, but we were discharged the next morning.  

But I don't want to sleep, Mom! 

Noah was ecstatic to see his brother when we got home.  

Happy to see his brother!

So, now the real work begins.  Noah will have a post op on 8/9, CI activation on 8/16 and a mapping on 8/30.  After August we will only be up at Stanford ONCE A MONTH for the next few months.  What a relief that will be.  

Thank you all for the prayers, good thoughts, kind words and support.  It was much appreciated. 

The day before THE DAY

Noah is enjoying a day in San Francisco with Daddy today going to the aquarium, riding cable cars and eating Ghirardelli chocolate.  A fun day before a stressful day tomorrow.

Anxious

So, it's started.  The pre-surgery anxiety has hit me.  It hit me last night as I tried to go to sleep.  I awoke every few hours and finally at 3:33 am, gave in.

I got up, packed for JK and Noah (who are leaving this morning for Stanford--I'll join them tomorrow night), cleaned the kitchen, folded laundry, watched an episode of Dexter and drank 4 cups of coffee before work started and Luke woke up.  I can't even put my finger on what it causing the anxiety, just the permanency of it all and my baby under anesthesia yet again.  Until it's time to leave, I have a full plate.  Luke had VBS today and then his Kindergarten assessment during my lunch hour.  I'm working a full day and taking Luke on a date to the fair tonight.  

At Luke's Kinder assessment, he had to draw a self portrait.  I wonder if he was the only kid that put a large penis on his..... It was not a proportional drawing!  He also recited his ABC's, showed off his reading skills, number skills, colors, shapes and handwriting.  Both Kinder teachers at AACA seem really great and I'm sure Luke will be happy there.  

I'm sure I will DRAGGING by this evening, but hope to get a full night of sleep to rest up for surgery day and the long drive home afterwards. 

Under 2 weeks

We are under the two week mark until Noah's CI surgery.  As it approaches, I find myself getting more and more anxious and nervous.  No matter how many times your baby has had surgery or been under anesthesia (and for poor Noah it's been quite a few) it's nerve-wracking.  Although I *KNOW* that we're making the right decision for Noah and our family, a small sense of doubt always creeps in.  Noah will have to have speech therapy 4 days a week and AVT therapy once a week.  At 3 years old, he is gone from home for over 6 hours a day at school and therapy.  I remember being so worried that at 3 years old Luke would be gone for 3 hours a morning, 2 times a week.  My hope is that by working so hard with Noah at this age, he won't have a language delay and will be better able to communicate.  At times, it's all so overwhelming.

The church that my in-laws attend has a prayer quilt ministry that my mother-in-law is a part of.  Basically, they make quilts for people who are going through a rough time and instead of being quilted they are tied with yarn.  Each tie on the quilt represents someone who said a prayer for Noah and our family.  This last weekend, we were given the finished product and it is BEAUTIFUL.  Noah just loves it and I plan on taking it with us to Stanford for his surgery!

Front of the Quilt

Back of the Quilt

Label 

ONE MONTH!

Noah's cochlear implant surgery is scheduled for July 24, 2013!  One month from today!

On hold

Ever since getting the news that Noah would, in fact, be getting a cochlear implant this summer it's as if our life is on hold.  I'm hesitating to sign the boys up for additional swimming lessons, day camps, trips to Grandma.....  I'm hesitating in committing to going to my nephew's baptism, a cousin's wedding or pulling the trigger on anniversary plans or JK's trip to Vegas.  Not knowing when surgery will be is KILLING me.  I'm a planner and need to make plans.

He amazes me every day!

Part of the cochlear implant candidacy process is a speech evaluation.  They want to predict the likelihood of Noah being able to communicate verbally after implantation.  I just received the report from Noah's speech evaluation last week.  

If you can't read that, it says, "Standardized scores will be used as a reference as this test is not normed on children with hearing loss.  The average range for standard scores is from 85-115 with 100 as the mean.  Noah achieved a standard score of 110, scored in the 75th percentile rank, and received an age equivalent of 3 years and 8 months of age placing him within the average range for his age."

Wow!  Okay.....this test was made for kids WITHOUT hearing loss.  That means that this test is comparing Noah to children with NO hearing difficulties and he's within normal limits!  Just amazing.  For a child who is functionally deaf, his coping skills and lip reading skills are just amazing.  I do feel fortunate that he had so much exposure to language before he deafened and I think that it will help him in the long run.  SO proud of this little man!

It's officially official!!!!!!!

Noah is getting a cochlear implant!  Our awesome Audiologist called yesterday at 6:30 pm to relay the good news.  I almost didn't answer the phone since it was a "unknown" number, but I'm thankful that I did.  He told me that we are "moving forward with Noah's cochlear implant on the left side" and that the scheduler would be calling me "soon" to set up the pre-op and surgery.  He estimates that it will be 6-8 weeks from today!!!

I've been trying to explain what's going to happen to the boys.  Luke gets it and has seen a video of a cochlear implant and how it works.  Noah, on the other hand, replied "That's so weird" when I told him that he'd soon have a device that helps him hear attached to his head with a magnet.  It *IS* pretty weird when you think about it.  I'm just thankful that we live in a time where amazing technology like this is available!

We went with.....

Cochlear!

Cochlear America vs. Advanced Bionics

TOMORROW we choose the brand of CI that Noah will receive.  I have gone back and forth a million times between Cochlear America and Advanced Bionics.  The processor isn't really the selling point for me because, very similar to cell phones, you upgrade your processor every 5 years or so.  As technology advances, the processors will continue to decrease in size.  I would hazard to guess that within Noah's lifetime, they will have a fully implantable processor.  However, you are married to the internal components.  They are not interchangeable.  I have done hours and hours of research and garnered numerous recommendations from other parents.  Much like Mac vs. PC, everyone seems to LOVE the brand they choose.  Likely, that's because to say otherwise would be to admit a mistake and who wants to do that when discussing a device that will be implanted in your child's skull and inner ear FOREVER?!

So, I have until tomorrow at 4 pm to make a decision and stick with it......

Any last minute words of wisdom from my other CI Mommies out there?

 

Meeting our deductible for the year.....

One of our last steps in the cochlear implant process was Noah's MRI to check on his cochleas.  Now, Noah had already had a CT so we knew that the cochlea were normal shaped, but they insisted on an MRI.  Due to the magnet that will be implanted in his skull, he will never be able to have another MRI.

Noah was in rare form before the MRI.  He was a bundle of trouble, taking away a million miles per minute.  He was making every crack up.

MOST kids would be nervous or anxious about anesthesia, but not Noah.  This was him pre-anesthesia:

Ready to go!

 After a quick stay in recovery, we were headed for french fries and a milkshake (Noah's request)

In recovery

During this time, JK and Luke were in San Diego visiting Grandma Ann and Auntie Aubrey.  Luke was quite the fish in the pool

 That was UNTIL........he swam into the side of the pool steps......

Ouch!

Luckily, they were able to use DermaBond and Luke avoided stitches.  Luke and Noah don't do anything the same.  ESPECIALLY react to medical procedures, stitches, IV's and shots....

Getting glued up.  In Luke's words, "They didn't use hot glue though.  Just regular glue"

We meet our deductible for our medical insurance EVERY year.  This year especially.

Can you see it?!

Can you see the pride and excitement on Noah's face?

My big boy!  Ready for his first day

To say he was 'ready' for preschool was an understatement.  As JK and I held back tears (and my friend, Jeanne, didn't even hold them back) Noah boarded a school bus to head to his first day of preschool 30 minutes away.  Being that it was the first day, Jeanne and I stalked the bus so we were familiar with the route and to ensure that Noah would be okay.  And, hey, let's be honest.  We spent an hour in the car talking, had breakfast and perused Barnes and Noble ALONE.  Without kids.  Jeanne and I do barely anything without kids.  This time off from work next year is looking good for us....but I digress.  I can't even adequatly describe the excitement on Noah's face when the bus pulled up.  He threw his Cars backpack over his shoulder and hopped on, barely looking back.

On the bus with Rayleen!

Following the bus over the grade

After arriving at school, he ran inside and found his nameplate. He proudly exclaimed, "That says ME!" and sat down to join the rest of his classmates.  I told him I was leaving and he waved good bye happily.

With his name plaque

Today marks Noah's third day at school.  He's pretty quiet about what he did, but he told me, "I love music time" and that "All my friends have these" (hearing aids).

While this wasn't the preschool that I envisioned Noah at, it seems to be a pretty good fit.  He's proud of himself and I'm SO very proud of him.

Phew....IEP done.

After just over two hours, Noah's first IEP is done.  In the books and recorded.  There were a couple of tense moments and I swear I saw the school psychologist sweating at one point, but we are done.  We disagreed on some of the goals as I felt they were too easy for Noah and want him challenged.  One step closer.  On wards and upwards.  A huge shout out to my dear friend, Sunny, who went with me.  Her years of IEP advice were invaluable and it was nice to have someone "on my side".

All that said, Noah will begin school on May 20th!  It's nerve wracking to think of sending my newly turned three year old on a bus for 30 minutes, but he's so amazing that I'm sure we'll all be fine.

This weekend, Noah, JK and Luke are going camping.  JK always takes Luke camping with his friend Scott and daughter, Alyssa.  Noah has always been able to go "when he's three".  Well, Saturday he's three and he's going.  That leaves me with Friday night, all day Saturday, Saturday night and Sunday morning all to myself.  I think I'm going to paint Luke's room.  It's an exciting life I live, you know!

It's official....kind of.....

It looks like it's quasi-official!  Noah recently had his appointment with his NEW audiologist.  After more testing and discussion, he all but told us that Noah will qualify for a Cochlear Implant!  The reason I say "quasi-official" is that Noah still has some other requirements to fulfill.  Namely, Noah is up at Stanford today with my Mom and Dad having a behavioral analysis.  It's just part of the checklist.  Also, within the next two weeks, the entire team (ENT, Audiology, Behavioral Specialist, Social Worker, Speech and Language Pathologist) will meet and discuss Noah as a CI candidate.  In the audiologist's words, "Our meeting should take about 5 minutes.  I don't see any reason that he won't be approved".  Woo Hoo!  They had told us that we should expect a surgery date around July of this year!

We did have a long conversation about unilateral vs. bilateral implantation.  Noah still has a "decent" amount of hearing in his R ear.  With his hearing aid, he's not in the normal range, but he is close to the speech banana threshold that is desired.  Since the implantation of the CI destroys any residual hearing, he has too much to lose.  We will likely be implanting one side and then waiting for when (and if, I suppose) he loses the hearing in his R ear.

I will breathe a HUGE sign of relief when we are FULLY approved and have a surgery date scheduled.

Next on my list is Noah's IEP this Wednesday.  Thankfully, a friend who is well versed in the IEP system is going with me for moral support.  I will also breathe a sigh of relief when that thing is agreed upon, signed and DONE.

Searching for a genetic cause....back to square one

I talked on the phone to Noah's geneticist today.  Remember I had said that they were going to further test his blood to test for another variation of Stickler's Syndrome?  Well, the results came back and they were NEGATIVE.  I was kind of surprised since Stickler's Syndrome was such a likely match given Noah's symptoms.  So, we are back at square one.  The latest in genetic testing is exome sequencing.  Monday, Noah will be heading up to Stanford to meet with the geneticist and discuss this testing.  Since it's new, insurance coverage is questionable so that may be our deciding factor...... Who knows?!?!?  Just when I think we'll figure something out we're back at the drawing board.  UGH!

Two checks in the WIN column

1. I had been VERY anxious about insurance coverage for the CI process.  I had put off reviewing my policy documents regarding coverage for the process.  I was nervous that it would be a huge fight.  Today, I sucked it up and went online to research my benefits.  Wonder of wonders, this is what I read under the COVERED section, "external cochlear devices and systems. Surgery to place a cochlear implant is also covered by the Plan. Cochlear implantation can either be an inpatient or outpatient procedure". I understand that it still may be a fight and that Noah hasn't even been deemed a candidate at this point (we're still going through the process) but it's a major PLUS.  I have a feeling that Noah may be a candidate for his L ear (profoundly deaf) and a HA in his R ear at this point.  He still misses A LOT of the Speech Banana in his R ear, primarily in the higher frequencies.

2. While at Noah's IFSP (yes, we had to redo it for just two weeks until he's 3-HUGE time waste) his testing shows that he is within normal limits with speech and language compared to kids of his age both with and WITHOUT hearing loss.  His intelligibility has really decreased since the loss of his hearing, but he is still  using proper syntax, vocab and tense.  Just AMAZING for a child that without the hearing aide in his R ear can hear something the sound of a jackhammer and NOTHING in his L ear!  They asked me to recall the longest sentence that I'd heard him say.  I knew exactly what it was, but was embarrassed by the content.... "Luke, I'm going to take your finger, put it in my mouth and bite it".  On a side note, he didn't actually bite Luke (although Luke might have deserved it!).  

So, in counting great things, that's not one but TWO huge wins!