Friday, December 21, 2012

More on the CI Journey

Yesterday we were at Nemours in Wilmington (the children's hospital where all Ryan's appointments are located) doing some fun hearing aid fittings.  I must say, Ryan is such a trooper.  The ear mold for her left ear wasn't correctly fitted, so the tech tried to fit it correctly for her.  Unfortunately, after about an hour of putting the hearing aid in and out repeatedly, she thought it would just be better to remold her ears again.  Which, I'm definitely not complaining as taking molds of her ears are great so that her aids will continue to fit her as she grows.  In the mean time we do have a left hearing aid that works, it's just kind of hard to keep in her ear consistently.

Ear molds!!  I laugh at this pic because the tech and me wore her out and she fell asleep during the molds.  Too funny.  The tech said that a baby falling asleep during all this was a first!  Ha!!

After the appointment that ended up lasting 1.5 hours, we had to rush home to meet with our Early Intervention coordinator.  (Weekly appointments).  We had a ton of fun with Ryan and her hearing aids on.  I will film her and put it on here, but basically, Ryan is responding to sound!  Which is awesome!!!  I'm trying to not get too excited, as she definitely does not respond to speech or normal noises, but she does respond to really loud (seriously loud) noises with her hearing aids on.  I'll take a couple of videos and you'll see what I mean. It's not like she is really turning her head consistently towards the loud sound, but she blinks and/or her eyes open really wide-- it's the faintest of response, but it's still a response.   I'm just glad that these hearing aids will just help her little brain be stimulated prior to 9 months with the CIs.

Also, we spent last Friday evening down in Wilmington-- these trips are pretty much weekly now-- for a Cochlear Implant Christmas Party at the Nemours. As any normal obsessed parent would, Sean and I saw this as a fantastic networking opportunity.  

We learned a lot from many parents, from which CI manufacturer they chose for their child and why, and which school they chose to send their child to for learning.  Many parents send their kids to The Clarke school, which is an oral / auditory school for the deaf located 20 minutes from our house.  There are only four Clarke schools in the country where children who have a severe to profound hearing loss learn speech as their primary language.  No sign language is even taught at the Clarke school--not even baby sign language.  Now, if you have a child who is hard of hearing, you probably know that this methodology of not teaching deaf children ASL (American Sign Language) is pretty controversial as there is much research in support and in disagreement of ASL correlating to spoken language development.  A few of the couples we spoke to that evening send their child to pre-school at the Clarke school, and love it, as their children's language has just taken off while preparing them for mainstream kindergarten.  This is so encouraging since almost all of the parents we spoke to, their children were implanted no earlier than 15 months, and all were sequential implants- no bilaterals.  So, even though I keep telling myself I want Ryan to have CIs earlier, I guess I'm okay with 9 months, bilateral.  I just wish it were tomorrow.

As far as manufactures go, we are still doing much research and plan on sitting down with a rep from each manufacturer to understand the future plans and pipeline for each product.  Sean and I are confident that all three CI manufacturers are solid options from being able to understand and learn spoken language, but we want to know what the future is for each of these companies, and how are they looking to enhance their technology further.  

Up next, Genetics testing on January 3rd!!!!

Tuesday, December 18, 2012

It's Christmas Time! Already!!!

As we are starting to get ready for the holidays this year, I have noticed that I haven't done a very good job of taking pictures OR posting to my blog (or FB for that matter).  I mean, the media says that we have an extra weekend this year, but I seriously cannot believe we are already one week away from Christmas.  Time passes so quickly!!!

At school today, it was wear your Holiday attire, and just like every other day in December the kids were wearing something that had to do with Christmas.  I swear, I have more Christmas garb this year than ever, for both Bryce and Ryan!!!  I normally would just choose one, max two, pics in the same pose, but this morning (these were taken before 7am), I couldn't help but laugh at all the different faces that each picture capture.

  
                  Little sister watching big brother intently.     Big brother practicing his side smile.


   
                 I hate this!!!                                           As soon as big brother leaves, Ryan topples over!

Saturday, December 8, 2012

Scheduled: 9-Month CIs!

To say that this was a pretty stressful week for mom and dad would be an understatement.  On Wednesday, Ryan had her MRI and CT scan.  This is done to determine her candidacy for Cochlear Implants (CIs).  Basically, for her to be a candidate, besides the diagnosis of profound hearing loss, she has to have a 'normal' MRI and CT scan, which at a minimum displays that Ryan has normal inner ear structures.  And, drumroll..... Ryan is a perfectly healthy baby girl.  Her MRI and CT scan were both normal, showing nothing but a normal baby brain and structures.  Thank God.

The CI Date
Upon consultation with our surgeon on Friday for review of her MRI/CT scan, he told us that Ryan will have cochlear implants on May 6th!!!  Yay!!  9 months is definitely young, but it is so great that she will have both ears completed at once and that she will be able to hear us by the time she is 10 months after her ears have had time to recover.  We still have several milestones to complete before then (i.e. genetics), but assuming all is good, we have a date to look forward to.  Just to note, most surgeries are done at 12 months or later, but there is so much research supporting earlier implantation that Sean and I have been trying to be so proactive for an earlier surgery date.  Although this is not fun to deal with, we know that we have to be 'crazy' parents to fight for what is best for our daughter.


The MRI
Although this sounds pretty straightforward-- to have a MRI-- but for babies and kids, let's just say it's a whole event of a day.  Since she is a baby and has to lie perfectly still, she had to be sedated.  Being sedated means that she had to have an IV.  Most kids are lucky because they can have medicine that will take away the anxiety and pain of putting in an IV, but the anestiologist didn't feel comfortable giving Ryan this medicine due to her age, so Ryan had to deal with the nurse poking her twice to get a strong enough vein.  And let me just tell you, that was no easy feat to watch as a parent.  Our baby screamed in pain during this whole event, and it was horrible to watch -- she was so scared.  Once that was completed, we had to wait. and wait. and wait. for the MRI scanning machine to be open. Of course, they tell you not to feed your baby for several hours before, so now we have a baby who is in pain because of the IV and who is now starving.  (Well, maybe not starving, but she was hungry that's for sure).  Finally, the machine was open, and at that point the anestiologist came back in to give her propofal to put her to sleep.  Again, not fun to watch for a parent-- watching her go to sleep and be very still.  At this point they send out the parents to wait.
So, we waited quite a while-- seemed like years.  But, it was only hours, and we were allowed to come back in.  Of course, Ryan was still asleep and pale as a ghost, but she woke up pretty quickly.  Again, Thank God.


                                Getting weighed in                                                   Checked out by our nurse



                             Hanging out with daddy                                         Hanging out with mommy

             Pretty hospital gown to go with her little grimace                 Getting some rest before we begin


                             More and more resting


                     Immediately after surgery                                  Daddy waking Ryan up afterwards



 We got Abby at the hospital gift store before leaving-- 
Ryan's new best friend



Today we found out we will be getting CIs in May 2013
Yay!



Tuesday, December 4, 2012

Some More T-Day Pics

Going to the plane on our way to Omaha:



On the plane with daddy and watching Sesame Street


2nd Cousins-- Noah & Andrue

                                         
                                Grammy & Gramps!                                                        Hands in the air!
Ready for Christmas!!