Landri's Listening update! 7 weeks of hearing!

Things have been so hectic lately that I haven't had a chance to get updates on the blog about Landri's progress and reactions since her sound was turned on.  I have so much to share!  Whew!  What a rollercoaster this journey has already been!  Up and down, up and down!! Since Landri's activation 7 weeks ago we have been back to the University of Iowa 4 times for MAPing appointments, electrophysiology, speech, and an appointment with her surgeon about a game plan for finishing the implant surgery on her right ear.  Sprinkle in a blood draw for genetic testing on her heart condition that took 15 years off of my life, interviewing private speech therapists, jumping thru insurance hoops, concentrating on pumping in the language Landri needs daily, creating good listening environments, trying to evaluate what sounds we feel Landri responds to, understands and replicates and I think that the next appointment needs to be for a psychiatrist for ME! :-)  Thank goodness I have other rockstar CI mommies as role models that work full time, have older children with a 1001 activities, are fabulous advocates for their children and get it all done while remaining sane.


The highlights!!!

• CI appointments and MAPings - Landri has received 18 MAPs..I think....since she was first activated.  Each one is gradually louder.  She had one set of 8 that she really struggled with and pulled her CI off every second.....every half a second......much like right after she received her processor  It really was a challenge and a battle of the wills.  But, we worked thru it and in her most recent appointment they sent us home with only 2 maps!  One loud and one soft for different listening environments.  I am thrilled to say that Landri loves her latest map!  We turn the volume down a bit in the morning and after naps, but have her up to her optimal volume within 45 minutes.....so much easier!  A huge thanks to her Audis at the University of Iowa for this great map!  At her next appointment in 3 weeks they will put Landri in the sound booth for the first time since her activation to hopefully get an audiogram out of her which will give us a better indication of what she is really hearing.  I can't wait!
• New sound moments for Landri - Landri's two favorite sounds are "ahhhh" and "mmmmm".  Everyday is soooo different. Some days she only says "ahhhhhh" all day....like to the point that she is hoarse at night and I wonder if she is every listening to me.  Other days it is all "mmmmm" and other days she is sooooo quiet I keep checking to make sure her CI is on and working.  At first all the drastic changes from day to day concerned me, but when I step back and think about it she has never heard her own voice before. How strange would that be?  No wonder she wants to hear it all the time.  And just like a typical one year old it becomes old news at some point and then the other sounds she is hearing become exciting and those are likely her listening days when she is so quiet.  Her TOD was at the house the other night for her therapy session and found that Landri consistently dances when music is played and then just listens when it is speech so we know that she is hearing!  We also have started testing Landri with the 6 Ling Sounds that represent different sounds across the speech banana on the audiogram.  Landri responds to all of them with no visual cues.  What we are waiting for is for her to turn to her name.  We have never seen her do this and we must use her name about 1000 times a day to reinforce it. I am anxiously awaiting this moment!!  We do see Landri react to many environmental sounds and I love to see those moments when I can tell something new has clicked for her.  I still struggle to try to assess her receptive language, but I need to remind myself....she has only heard sound for 7 weeks!!  Crazy!!
• Landri's Therapy and resources - As a parent of a deaf child you have many decisions to make - hearing aides vs. cochlear implants, bilateral or unilateral, simultaneous or sequential implants, brand choice, surgeon selection, age of surgery, etc.  Honestly the decisions never end nor do the opportunities....responsibility....to advocate for your child.  One of the decisions that needs to be made is a communication method.  After much research we chose an Auditory Verbal approach for Landri.  This means that our goal for Landri is to be completely oral and mainstreamed in our neighborhood school by Kindergarten.  We want to challenge her to listen and speak and develop her auditory nerve and listening skills.  We have chosen to pur our time, energy, and a bit of faith in this approach vs. teaching Landri sign language.  Unfortunately our state has not one licensed AV Therapist....not one.  Any AVTs out there looking to make a real difference in the lives of deaf children and make many moms smile and sleep easier at night....please move to Iowa!  :-)  Since Landri was diagnosed as profoundly deaf we have been very blessed to receive a Teacher of the Deaf for her 30 minutes a week.  Since Landri was activated we held a new meeting and were fortunate to increase her TOD services to 45 minutes a week and also add an SLP to her team for 30 minutes two times a month.   The U of I recommends private speech services in addition to the ones provided to us thru the state.  Since we have chosen an AV approach for Landri we have researched extensively a new way of doing therapy.  Some well respected therapists and Oral schools across the country are now offering distance learning programs via SKYPE and other web based services.  This is a new approach developed by therapists that love our kids and realize the children that don't live in a community with an Oral Deaf school also deserve to have the resources available to learn to listen and speak.  We have visited with 4 programs that offer this service and hope to have a decision made this week. We are also in the process of jumping thru insurance hoops to see if we can get some of Landri's private speech services covered.  Distance Learning programs are so new that we have some convincing to do with BC/BS.
• Finishing Landri's right ear - After much research once we determined Landri was a cochlear implant candidate we made the decision that we wanted Landri to be bilateral...have CIs in both ears.  Studies have shown that these kids do better in noisy environments and in localizing sound.  Since Landri's first surgery could not be completed due to fluid in her ear we still need to have this ear completed.  We saw her surgeon at the beginning of the month and he said that her ear looks GOOD and that he would like to complete the surgery in the Spring.  Yeah!!!
• Landri's heart condition - In Landri's last CI surgery they found that she has a heart condition called Long QT disorder.  It involves her electrical system and how her heart beats.  Within hours of that surgery they started her on medication to slow down her heart rate. She has been on this medication 3 times a day ever since.  She has had another EKG to confirm the condition.  The disorder is genetic and we need to figure out which strain of the disorder she has to determine best how to treat her as she grows.  We are awaiting the results of genetic testing.  It is a miracle when you think of it. Because of her we found out that I have the same heart condition as well.  Thank God Halle does not. 

Information overload!  This is just a snippit of all that has happened.  It is so hard to include every single thing!  To anyone that is still reading this crazy long post I wanted to share a cute story about Landri.  She found her belly button the other day.  She kept pointing at it...then she would point at her nose...then to me.  She did these three steps over and over again.  I am for sure she was saying " Look Mom! I found a nose growing out of my tummy!"  :-)  We also got to see her CI buddy Evan this weekend when we met in Des Moines. I can't wait to watch them grow together in their new world of sound.  Miracles do happen. Blessings to all!