A hearing pocket!?

Landri's right ear will be "activated" one week from today!  This is where the audiologists program and hook up the external pieces that Landri will wear on her right ear.....same set up as on the left.   I am so excited to see if Landri has a reaction.  She didn't do much when she heard sound in her left ear for the first time, but now that sound has meaning to her I am anxious to see how she receives her new surround sound.  I am for sure that Landri is wondering what her right ear is for.  She has decided to use it as a pocket. :-)  Ya know how most kids Landri's age put everything in their mouths......Landri tries to put everything in her right ear.....never her left.  When she walks around outside she is always trying to put rocks in her right ear....she sat on the deck for about 20 minutes today trying out different rocks that Halle had found in her ear.  We have had to pull the car over because she got a cheerio wedged in there and thankfully we were able to get it out.  She tries to put straws in her ears, wood chips, food.......all her most favorite treasures.  I think she wonders what that thing is for.  I can't wait for her to realize that we will now use that ear to hear!  A hearing pocket......what a good use! 

We've been busy!!!

I've been wanting to get a post up getting caught up on all of Halle's activities!  She has been busy with school, soccer, softball, dance, and cheer!  She joined a singing group at her school and they had a performace a few months ago.  I was thrilled to get her in a little dress so here are some of my fave pics from the night!  I was super proud of her because their practices were before school and she never complained once about getting up early.  She has a FAB music teacher that does a great job with the kids! 

She is just starting softball so I will get more pics up of that once the season gets going.  She has dress rehearsal for dance this week!  Halle is in 5 dances at recital so it is a miracle if we make it to recital in June with all outfits intact!  She loves dance this year....loves it!  She moved up a couple of levels this year and is challenged more. She loves it!  She is one of the youngest ones in her classes....if not the youngest...but I think that has been good for her.  She does all of her classes on Tuesday nights and we get a 45 minute break in the middle where we get dinner with other moms and dots. I look forward to Tuesdays and spending time with her. She is growing up before my eyes.  She recently had cheer tryouts and placements. 

 Halle was thrilled to find out she moved up into the Junior division. She is so excited!  She gets to travel to more competitions this year......I nearly went into cardiac arrest reading the financial requirements, but we will get thru it!  I am really proud of her. She works really hard going to extra tumbling classes and open gyms to work on her skills.  She really loves it and I love to see her hard work pay off.  Cheer is a hardcore sport these days!  Those girls have to work so hard and be so athletic. We also took a trip to Mall of America and American Girl Doll Store. We had such a great time! 

It was so nice to get away. We met Greg's fam there and his Aunt and Uncle and cousin.  It was so nice!  We also had several people come up to us sharing their Cochlear Implant stories/connections....or asking us about what Landri's CI was. It was the first time since she has had her CI that we have traveled to a larger city and I couldn't believe how many great families we met thru starting conversations about Landris' CI.  I can't believe Halle is almost done with 3rd grade.....seriously?  It has been such a great year for her I wish I could freeze time.  She is growing too fast.  :-)

Children with Cochlear Implants Achieve Similar Educational and Employment Levels as Their Peers!

PS - until I can figure out how to flip my pics again....please tilt your head. ;-)  love this sister pic

Of course, I never doubt for a second that Landri won't be able to achieve any goal that she sets for herself...but it is always comforting to read studies like this to confirm it.  Also, reassuring to see that the communication method that we have chosen for her got rocking results.  A little sense of comfort on this faith filled journey!  follow the link!!

http://www.sciencedaily.com/releases/2010/04/100419162300.htm

Landri - 4 months of hearing!

Landri has been chatting up a storm!  I feel like we are finally starting to get in a groove with speech as we finally have a fab team in place!  Landri has 3 speech sessions a week between what she is offered thru the state and private speech services that we obtained via teletherapy (webcam sessions) and driving to the Quad Cities.  She says "hi" all the time now with purpose...very clearly!  She says "mom"...it's funny...it is rarely a "mama' just a clear, short "mom".  She has a lot of intonation in her voice which makes me happy!!  She makes several sounds for animals and vehicles. Receptively she is understanding more each day!  We are pumping language into her as much as we can and have committed to doing more singing and music play.  Boy...it is so wonderful to have her progressing, but seriously it is HARD work!  It is a HUGE commitment and overwhelming at times.  Of course, you never feel like you are doing enough therapy hours or tracking her progress well enough.  Every CI parent reading....take a second and give yourself a bit pat on the back!  I read on another blog recently that during the next 4 or 5 critical language years you have to let go of the fact that your house may be messier, you may not be at every social gathering with friends, your family may gain a few pounds from eating out so much.....but your deaf child will listen and speak!!!  We have started to condition Landri for her next soundbooth test. She holds a ring up to her ear and then when she hears the sound we have her put it on the peg.  It is seriously super cute to watch her hold that little ring next to her ear smiling and waiting for sound.  We also play music and dance then turn it off and "Listen...I don't hear anything...where did the sound go?".  :-)  Of course it is to Justin Bieber because Halle has Bieber Fever (tears in her eyes when we finally got thru to Ticketmaster for concert tix),  but that just makes our therapy unique to our fam. :-)  Landri hears just about everything I am sure of it! We met with her surgeon last week about completing her right ear....long story...stay tuned. Tentative surgery date to complete that ear is April 23rd. What a journey!  Here are some long over due pics!  As those of you that know me you won't be surprised...I was having a problem getting my pics to rotate so I was limited to those already right side up!  :-)  Will figure it out and get more pictures posted soon!

Jervell Lange Nielsen Syndrome - we have a diagnosis!

So sorry that my blog has been so abandoned.  :-) We have been very busy!  I will try to cram everything in that has happened in about 3 posts - get some caffeine!  As I have briefly shared on the blog in Landri's second CI surgery they discovered a heart condition called Long QT and put her on a beta blocker 3 times a day to help prevent her heart from going into a funky rhythm.  A super quick side story - we were able to discover this from a VERY determined nurse in Post Op that is really an angel to us. Anesthesiology told us it was nothing to worry about, but thanks to a very savvy and determined nurse that pulled us aside and told us that "if it were her child" she would have a Cardiologist see Landri yet that day since we had to spend the night from surgery and told us that even though the Dr. didn't recommend it that we as parents had the right to request it.  I only share this because I think it is always good to remind moms everywhere to trust your mommy instincts and advocate for your kids!  This 5 minute conversation from this very special nurse likely saved Landri's life......seriously...and possibly other lives in our family.  Following that day Landri and our family (the heart condition is genetic) went thru a series of tests.  Landri's have been completed and we are still waiting on some results from Greg's and mine.  Landri's came back that she has Jervell Lange Nielsen Syndrome which is a condition that combines deafness and Long QT Syndrome.  JLNS effects the potassium channels in Landri's body which are needed for hearing and a normal heartbeat.  The odds of having JLNS are about 1 in a million....literally.  We always knew Landri was special.  Please follow this link to learn more about Long QT  www.nhlbi.nih.gov/health/dci/Diseases/qt/qt_whatis.html     With JLNS you have two mutated genes of Long QT 1.  Since Landri has two mutated genes versus the typical one mutated gene associated with most Long QT patients she is at higher risk for an episode (fainting, seizure, sudden death).  Because of this her Cardiologist at the University of Iowa, Dr. Atkins whom we love, recommended that Landri have a unique procedure called a left sympathectomy (there is a more detailed name for the procedure, but the exact name escapes me).  :-)  Since they had never performed this procedure at the University of Iowa (I told you this is a RARE condition!)  we agreed that the surgery should be performed at the Mayo Clinic under the care of Dr. Ackerman and Dr. Moir, whom we also totally love!  They had done the procedure about 17 times on children.  We spent 5 days up at Mayo and Landri came thru the surgery like a champ!!  Basically they removed 4 nerve centers on Landri's left side that cause your body to sweat, feel anxious, heart to raise, etc when under stress or very emotional in the hopes of preventing Landri's heart from going into an unrecoverable funky rhythm.  Dr. Moir did a fabulous job.  This is a very precise procedure and Landri was in great hands!  There is a common side effect with the procedure of a droopy eyelid and thanks to Dr. Moir Landri still has a perfect lid! :-)  Since Landri had the procedure she no longer sweats on the left side of her body...ever.  That took a bit getting used to.  One hand is always clammy and the other is always dry.  When she sweats at nap time there is this distinct line down the back of her head....one side drenched in sweat and the other bone dry.  :-)  Small trade off to keep her safer and will likely be a cool trick at college parties some day.  Landri still needs to be on the beta blockers 3 times a day and she will be on them for life.  They will do an EKG on Landri about every 6 months and then as long as she remains episode free we are on cruise control until Landri gets bigger and closer to puberty which is the highest risk time for her.  At that time her Cardiologist here and her Cardiologist at Mayo will decide if she will need an Implantable Defribillator to reduce her odds even more of having a sudden death episode.  We will cross that bridge when we get there!  Here is a link about Jervell Lange Nielsen Syndrome......the stats are scary....again...the nurse in Post Op was an ANGEL!  http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=jln  Quickly....on the rest of the fam....Greg's EKG was normal but he is still a carrier of the Long QT gene in order for Landri to have JLNS....my EKG was similar to Landri's and they put me on beta blockers as well....Halle's EKG was normal....praise God.  Still waiting for more test results and will then continue to dig into both sides of our families to determine whom else is at risk.  Thanks to everyone for their support and for those that donated to Halle's Jump Rope for Heart!  She raised $642 for the American Heart Association and we could not be more proud. 
 

Rights of Deaf and Hard of Hearing Children in Iowa

Below is a link explaining a bill that has been presented in Iowa!  Read more to hear about the Bill of Rights that that will hopefully be passed in our state.  Honestly......I am amazed that it has to be in writing that just because Landri is deaf that she is entitled to lunch and recess at school.  Seriously? Follow the link below to read more!

http://coolice.legis.state.ia.us/Cool-ICE/default.asp?Category=billinfo&Service=Billbook&menu=false&ga=83&hbill=SF2342

"Landri....Landri....I hear that!"

So much to update I am going to have to break it down into mini-posts!  Since my last post on Landri's journey to learn to listen she had another mapping appointment!  We were especially excited for this one as we were told that Landri would be put in the sound booth and that they would try to get an audiogram out of her. In the 4 weeks between appointments they had a policy change and no longer do sound booth testing until one year post activation.  However, after a little convincing they agreed to put her in the booth with the time we had left at the end of her mapping session.  What a different world it is to be in the booth with her knowing that she can hear!  Prior to her receiving her cochlear implant they did booth testing on Landri both with and without her hearing aides and she never responded to a thing....zilch.  As many hearing tests as your child has when they have a hearing loss you think that you would get used to those tests, but honestly sitting there watching your child completely oblivious to the sound around them never got one ounce easier.....always hard to watch even when you already knew she had no hearing.  Sooooo...fast forward to NOW when we know she has sound and we were SO jazzed to get in there!  They start by trying to condition Landri to look at a box with a blinking Big Bird in it everytime she hears a sound. We had a fabulous Audi, Kenny,  in the booth with us that did so great entertaining Landri and keeping her interest.  The first round was to gauge Landri's reaction to sound they plug into the booth.  Landri "ignored....we hope" a lot of it.  The results on this test indicated a clear response between 40-55 dbs across the different frequencies....our goal was somewhere around 25 dbs. They then tested Landri on speech sounds...the 6 Ling sounds we have been practicing at home.....she did a bit better...between 35-50dbs.  Of course...I am like..."what the heck?"!  But, the Audis reassured me that it is common for a little one as young as Landri to ignore many sounds their first time in the booth.  I am not overly concerned because I feel like Landri is reacting well to sound at home.  Of course, the opportunities in this journey to second guess yourself, wonder if you are doing something wrong, or to worry you are missing something, simply never end.  In the back of my head I wonder if we haven't done a good enough job conditioning Landri to react to the softer sounds?  Seriously I feel like we work so hard, but there are always things that fall thru the cracks.  I mean maybe we got tooo caught up in always saying "vroooom" for a car, always saying "up, up, up, up", always saying, "Mommy open the microwave, mommy close the microwave, oh..Landri's hungry!, let's listen for the beeps!"...I know my CI mommies can relate....that maybe we haven't pointed out and reinforced softer sounds enough?  To calm my mommy nerves we are now doing all the things we have been doing PLUS sprinkling in activities that really CELEBRATE softer sounds!  Wooo hooo!  The weird looks from other people at the Mc Ds playcenter when we clap and celebrate every sound that we hear in there is becoming old news!  Our family loves sound! :-)  Although....Halle could do with a bit less "excitement" about sound when we are in public at times. :-)  So...any other CI mommies that read our blog...should I be concerned about Landri's first booth results?  If your answer is "yes" you are worried, please send a bottle of wine in advance of your post.  :-)

When I started this blog I wanted to be so awesome at updating every new thing Landri heard and understood...but that is just so hard....so here is our update thus far!  I am sure she is trying to communicate more and likely understanding more, but so far I only put it on the list if I am for sure, for sure....for sure.

MILESTONES

Receptive - Landri understands these words with no visual cues

Dog

Baby

Cow

Halle

Bye Bye (although so hard to tell if this is situational)

Where

Landri

She also associates the following sounds with the right item

"Ahhhhh" for airplane

"Mooooo" for cow

"OooooOoooo" for firetruck

Expressive

Landri isn't "saying" any words yet so this is hard for me to figure out how to track. So here it is.  She will pick up the airplane on her own and say "ahhhhhhh". She will play with her cars and say "rrrrrrrrrr" for "vroom vroom".  She will say "mmmmm" for "moooo" when she plays with a cow.  She also says "mmmmm" when she plays with her ice cream cone or when feeding her baby (like "mmmmm good/yummy". All of a sudden we are noticing that she is making so many new sounds and varying her pitch. Everything is "sing songy" vs mono tone.  I am confident that she is "saying" other things I just need to figure it all out.  I mean clearly she is genius. :-)  She has been playing around a lot more with her facial expressions....blowing raspberries a lot again, opening her mouth big and wide.  I am taking these as all good signs that we are moving in the right direction toward communication!

Wow...it feels good to write this all down!  Also to get it in her blog...we consistently see her react to all Ling sounds except "eeeee"...but she tested the best on this sound in the booth.....go figure!