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! 

Halle turns 9 - by mom

Where does the time go?  Seriously.  I can not believe that Halle is 9.  It all goes so fast!  I feel like everytime I blink she is bigger.  I love every age with her, however I have to admit that I really loved it when she wanted to spend all her time with mom. :-) 

What I have learned about Halle so far...

• She has a huge heart
• She is always concerned about others' feelings
• She is a caretaker
• She is very expressive
• She is very dramatic
• She is great at imitating other voices and accents
• She is a performer
• She loves to be on a stage
• She is a great dancer
• Her favorite sports are soccer and cheerleading
• She is a loyal Iowa Hawkeye fan!
• She works at her own pace
• She is smart and good at school
• Her favorite things to do are cheer, make up dances, sing, be goofy, play on Webkinz, and watch movies.
• She knows what her sister wants before I can even figure it out.
• She loves animals and has a special place in her heart for all of her pets
• She is always on the GO!
• Her favorite food is crab legs
• Her favorite drink.....because mom rarely lets her have it....is Mt. Dew.
• She is a worrier, but likes to take risks all the same.
• She prefers to play at home.
• She is great at imitating scenes from movies
• She is super funny
• Her favorite color is green
• She is 9 going on 16
• She makes me smile

I love her

My Birthday Party - by Halle

Hi my name is Halle and I am Landri's sister.My birthday is January 16 i tearnd 9 years old my mom tells me to stop growing and stop getting smarter than her. We all thought Landri was going to be born in January and she was supposed to be born on my birthday but she was born 2 months early she was born on November26 instead of January16.

She came with us and my birthday was at Grandharbor water park I got to invite 5 people counting me 6 there is a really big water park we spent the night there for 1 night .I brought Macey, Jilliann, Chloe,zoey and another Chloe.for my birthday and what I got from Macey is make up a whole bag of it. from Jilliann I got a catapilller webkinz and Alivin and the Chipmunks the Squeakles cd from Chloe I got UNO sparkel and from the other Chloe I got dot'zas and Zoey did not spend the night cause she had a cheer compation and so she did not have time to get me a present. At the water park there are 3 slides. 2 were body slides where you do not need a tube and the other 1 you need a tube.  The one that you need a tube goes outside. It is a tunnel tube though so it is not cold and the other 2 slides are not tunnels.

It was really fun I am glad all my friends could go. Thanks mom for letting me go. It was in Dubuque if you want to go google Grandharbor water park.

There was this scabenger hunt and if you found all the peices you got to make your own reindeer and keep it and they would also give you 2 free tokens for this really big arcade.  There is this Deal or No Deal game and I won 400 tickets only on 1 turn and there is this chair you can sit in and it buzzes.