Finally! An Update!

Wow, it's been almost four months since I posted!

I'd like to try to update more with info about all of the family.  So often I feel that everything is focused on Eric.  And Kaitlyn doesn't get the attention she needs.  There is a therapist or instructor coming to  our house to see him, we are taking him to an appointment, or even the simple fact that he is only 18 months old and requires a little more everyday hands-on care than she does.  I have so much to brag about!

Kaitlyn is amazing.  She is growing up SO quickly!  I love the conversations that we have.  She is quite the shopper so the two of us are usually alone at the grocery store every week, chatting away.  She loves to say "Mom, you should buy that." with a very serious tone to her voice and look in her eye.  I try to turn her down gently.  Her signing is great!  Her brain is so much retentive than mine.  She has to want to use it though.  If you ask her, she doesn't like to perform.  She tends to go in and out of our sign language sessions so when she uses a sign we have learned, I'm actually impressed that she remembered it!  And she is usually willing to be a model for Eric when we want him to use one sign in particular, which is great.

Eric is communicating very well.  His sign vocabulary is great!  He can sign words that a child could never speak at this age.  I believe he has 10-15 signs now that he uses and more that he understands.  At the same time, we can tell that his hearing is developing.  He is babbling most of the time now, and has started doing it even when his ears (as we call them) are not on.  His consonant sounds are developing quickly.  Last week  his speech therapist heard a /g/ and /t/.  According to her, both are complex sounds, the /g/ comes from the back of the throat and the /t/ requires your tongue to touch the back of your teeth.  She was excited so we are too!  He says ball, more, Mama, Dada, and thank you.  Ball and more sound the best, but the rest aren't perfect!  Physically, he is still a little small, but on target with no concerns.  He is walking well, and he throws like a champ!  Heads up at all times if Eric is around, he will throw a ball at your head.  Hard.  So, enter the basketball hoop!  We joke that he is definitely going to become a basketball star at this rate because he can already make most of his shots with very nice form in his hand and wrist.  It's fun for us to see him enjoy it!

All in all, we have been a having a great time around here!  I really do hope I can manage to update more often from now on! Here are a couple pictures from the last few months.  = )



Eric in June





Eric October


              



Kaitlyn in June



Kaitlyn October



Eric spoke today!

Eric spoke today!  OK, OK, maybe he didn't exactly speak, but he formed a sound and then repeated it.  "Da. Da."

He has never made a 'd' sound before. Or any other sound that wasn't laughter or a purely instintctual "mmm" or "aaa".  And also, he only makes those noises when you are playing with him.  So today, he was just climbing in and out of a chair - when he sat down and said "Da. Da." And  then started climbing again.

This is a small but exciting step to us.  I know he is hearing us. We see his reactions more and more every day. Now we are seeing his brain start to use the new information that he is getting!  So exciting...

Eric's CI Activation Video

Sorry, life has been keeping us VERY busy.  Finally, here is Eric's CI activation video...

Happy Hearing Birthday!

Today was activation day!

Here we are in the waiting room.  Happy as always.


 Each ear must be set up separately so we started with the right ear...

This side is still pretty swollen.  You can see the bump under the top of his incision on this side.  The incision itself runs from the top where it's visible, as far down as the bottom of the processor.  The black cable is connecting him with the Audiologist's computer. 

The first thing they do is send beeps of different volumes and frequencies into the processor to test the electrodes and Eric's tolerance for them.  We will post some video later (sorry, they aren't as easy as pictures) but for now I can say the Eric did very well! 

He had some visible responses and as the levels went up, he would start to cry a bit and lean into me. So we definitely knew what levels we should avoid right now.

Then we turned on the microphone so he was hearing us.  He did wonderful! We could see that he was hearing us, but nothing was hurting or scaring him.  At one point, he seemed to turn to find the direction of a sound, which is actually pretty amazing at this level. I have a hard time imagining NOT turning to sound, but it is a learned behavior that Eric hasn't had the opportunity to learn until now.

We took off the right ear and hooked up the left to do the same process over again.

The incision on this ear is much nicer looking!  And there is less swelling as well.  But we are only two weeks away from surgery so both sides will look great soon. = )

All the testing went pretty much the same.  I'm not sure what Eric's actual levels are, but for now everything is set very quietly.  We want him to begin hearing, but slowly enough to let his brain adjust.  The processors can hold four programs.  We start with 1, and progressively move up as we feel Eric can handle the extra stimulation.

Eric took to wearing his new processors very well.

Wonderful. He's already discovered the cymbals...

There was a construction site outside this window that Eric could not get enough of.

So much that I had to call in reinforcements because he was getting too heavy. 

We went home two suitcases heavier than we went in.  Yes folks, this is our new arsensal of equipment.  It looks overwhelming because each suitcase is a set-up for two ears.  You have one primary set, and then the second as a backup. 

But you can't slow down these two kids!  Eric wore his processors like a champ all evening.  They are pretty easy to knock off in certain situations.  Since we are out of practice with the hearing aids, it's already driving us crazy to be constantly putting them back on while he's sitting in the high chair.

This is pretty good view of his right ear.  One of the options we picked was something called a "Snug Fit".  It simply replaced the ear hook, and added the loop on the bottom to hold them on better.

This is the left side.  Snug Fit doesn't look too snug... = )  We also requested the compact batteries.  Unfortunately, we didn't get them today.  So they eventually will be slightly smaller than this.

And here is Eric's new profile! Rockin' it like it's no big deal! ; )

What a week!

Wow. What a week. They say it takes a village to raise a child. I always knew it was true, but it's never been quite so apparent in our lives until now.

Last Sunday our surgeon called and said he had a cancelation on Tuesday early morning if we wanted it (instead of Wednesday mid-morning). After a few calls to make sure we could pull it off, we accepted. We are amazingly blessed by our village. I cannot thank each and every one of you enough. Even those of you that we did not have to call upon personally, your positive thoughts and prayers have given us great happiness.

Eric's surgery went beautifully. He went in with a little cough, which was made worse by the anesthetic, so we did have to spend the night when we weren't expecting to. But it's always better to be safe than sorry, so I wasn't bothered at all. Eric has been a champ. Nothing phases my son. And Kaitlyn has been amazing as well. We tried to prepare her to see Eric with bandages and whatnot, but I wasn't sure how she would react to seeing all of that while in the hospital as well. She was wonderful! The best big sister ever!

Now the hard work begins. I almost feel a little like when I did when Eric was first diagnosed. Sort of "Oh my goodness, what do I do now?!". Since getting the implants has been the goal for so long. But step two is activation!! Scheduled for 5/29. This is referred to as a "hearing birthday" because it will be the first time Eric has heard really anything at all. The idea that Eric has never heard anything has been on my mind a lot lately. I'm noticing every tiny noise in my life. Can imagine that? Never having heard anything at all?

Disappointment

As most of you know, surgery did not happen as planned today.  = ( 

Eric was sedated, hair shaved and drawn on before the Dr. realized he has a double ear infection.  Which, for a few reasons, made postponing the surgery the best action.  Oh my goodness, how disappointing.  They placed tubes in his ears and woke him up.  My baby boy was completely prepped for a five hour surgery and was done in less than 90 minutes.  The poor guy's slept pretty much all day today and still seems sleepy.  Hope I'm not up all night!!

So, we are re-scheduled on May 16th.  Yes, that is the original date that I fought to change.  Ironic, huh?  But what can you do? 

Thank you so much for everyone's thoughts and prayers.  We will be back for more next month!  = D

Surgery Time!!

Wow - CI surgery is in two days! Monday morning at 8:30. I can't believe we have finally made it. Just like all things related to your kids, time flies by! Wasn't I just pregnant yesterday?!

This is SO exciting for our whole family. I'm starting to get a little nervous but overall have no worries. I think we have everything set up. My mom is coming from MI to help out, which will be fun!

We would like to thank everyone for their support, and ask for continued prayers for a successful surgery and quick healing.

I spoke too soon...

Of course, I posted yesterday that the surgery date is May 16th.  The hospital called today and changed it - to APRIL 16th!!!  Woo Hoo! 

It's amazing...

We are on the schedule

Finally! I can finally say we are on the surgery schedule.  It has been less than a month since my last post and I'm pretty shocked by that. I have called the insurance company so many times, and exchanged countless emails with multiple hospital staff members. It has felt like forever.  And on Friday, roughly two hours after hanging up with the insurance comany, emailing the hospital yet again, and honestly feeling pretty unhappy, they called and said we were APPROVED!!!

Unfortunately, we lost our opportunity for surgery in April.  So May 16th it is.  How exciting!

We are also starting with a sign language teacher this week! It was supposed to be last week, but she had to cancel.  She will be teaching us pretty much whatever we ask for.  Exactly what we need to fill on the gaps of what we already know.  Which thanks to Eric's recent IFSP tests, we know 133 of the 400 signs I assume they think are the most common.  Not bad I think!!

Frustration

Well, on Wednesday, I found out that we got denied by the insurance company for Eric's surgery.  "He does not meet the medical requirements for cochlear implants" the rep says to me.  Excuse me?!  I promptly asked her to send me the report and include the appeal information because that will be happening.  = )  Turns out it's only that they will not authorize it prior to his being 12 months old.  OK.  Fine.  It's only two months from now.  The odds of getting on the schedule for March was slim anyway. 

So now we are waiting some more.  Unfortunately I need to convince the hospital personnel to pressure the insurance company for a conditional approval.  They wanted to wait to just appeal after his birthday.  But the conditional approval seems like an obvious, simple answer to our problem.  He will be 12 months when the surgery takes place, so shouldn't common sense say yes?  The doctor is only doing surgery one day in April.  I want Eric on the schedule!

But I'm trying to be patient.  It is not one of my strong suits.  I keep reminding myself that a one or even two month delay will not hurt Eric's speech for the rest of his life.  We will get approval.  And more importantly, he's not sick.  I'm sure there are plenty of parents out there fighting their insurance company for children that are very ill and that puts my frustration in perspective and I have to continue to be thankful.

CI Consult Day

Today was CI consult day.  It went very well.  Today they did a quick booth test to see how Eric responded.  The older he gets, the better he is at the testing.  They did not give us specific numbers of where he was hearing, but they were happy with the consistent results that Eric gave them.  They only said that they were basically the same as the levels as the test Eric had in December and still well above where he would need to be hearing in order to not be eligible for the CI.

After the booth test, I think we spent over an hour discussing the manufacturer options.  The Children's Hospital only works with two of the three manufacturers.  Cochlear and Advanced Bionics.  Now comes the hard part, choosing!  Obviously, they are both amazing companies.  And where one may have an advantage, the other may have a disadvantage, but the next feature you look at, it's the other way around!  And a lot of the things we have discussed are simply personal preference.  It is going to be a challenge for sure.  We are making a decision that Eric will live with for the rest of his life!

We also expressed to the team that we are very ready to get this process started.  The HAs are not giving any benefit that we can see.  We do not want to wait until Eric is a year old if we do not have to.  So they will prepare the case for approval from our insurance, and hopefully we will have good news to share soon!