Halle and Landri

Friday, February 19, 2010

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!

Saturday, January 23, 2010

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

Friday, January 22, 2010

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.

Monday, January 18, 2010

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!

Wednesday, December 23, 2009

Our busy bee!

Halle has been so busy lately! I am so proud of how hard she works at school and balances all of her outside activities. She always has funny things to say. She made up a new joke...."What did the pickle say to the hamburger?" "You're HAM-larious!". :-) Makes me giggle!! She has been making up new dances to songs, working on her back handsprings, doing a lot of crafts, planning her birthday party, and bonding with her sister. She had a decaf mocha the other day (like mother like daughter) and she said "I think this mocha is making me overreact!" because she was in a chatty mood. Then she said, "mom, I think your mocha is making you under-react." :-) So funny! She is so dramatic and I wouldn't have it any other way. The other day she got dressed for school and looked in the mirror and said, "I'm smokin' hot!". She keeps us all sane and everything in perspective. I love her.

SNOW DAY!!!

Playing a clown fish in the school musical!!! The forced smile is the humiliation of mom taking a picture of her in her class room in front of her friends. :-)