Life is Bliss - Lily's Cochlear Implant Journey

Baby Lab - 30 months

Lily Observations in the Baby Lab. 

1.  Lily continues to expand the length of her spontaneous utterances.  Some new complexity observed.

    a.  Embedded "wh" pronoun and past irregular - "Look what I found"

    b.  Semi-auxiliary - "Lemme see; Lemme stand"

    c.  Consistency increasing for +s on plurals and tz on possessives  - "comb baby's hair"

    d.  New forms of negation - "I have no crackers."

    e.  Reflexive pronouns - "by myself"

    f.  Noun phrase elaboration - "Your big spoon"

2.  Nice verbal planning observed today! -  "I gonna heat it up"  "Lemme heat up my soup"  "Now eat my soup"

3.  Exciting to see how specific her vocabulary is and how rapidly she picks up new words (jeans, pacifiers, alphabet soup).

    a.  Strong phonological (speech) development supports word learning.

    b.  She attempts difficult words - "Alphabet soup"

4.  Mom continues to provide beautiful recasts - You are filling in the details in your models that sets the stage for additional grammar.

5.  Some complex ideas emerging in her language.  "I know..."  "Now I...(time concept)"  "What else?"

6.  Speech intelligibility is strong for her age - It may vary when attempting a mouthful of ideas.

7.  Additional colloquial ideas - "There ya go, babe"

Audiology Report - 18 months post implants

Here are the highlights from our latest audiology visit in November. 

Results from today's testing indicated speech awareness thresholds (SATs) at 25db HL for the right side and 30 dB HL for the left side. Additionally, speech recognition thresholds (SRTs) were obtained at 20 dB HL for the right ear and at 20-25 dB HL for the left ear.  In the bilateral condition, an SRT was obtained at 20dB HL.  (For the audiologists that read this blog, we're always open to suggestions on how to make this better)

Responses to narrowband noise were obtained today at 30 dB HL and at 35 dBHL with the left processor.  Lily appeared to tire of testing before a more complete audiogram could be obtained.   An audiogram done in May was consistent with these findings. 

The NU-Chips test was administered.  Right CI only - 14/15 - 93%, Left CI only - 100%, Bilateral CIs 14/15 (93%).  The two Lily missed were comb and she touched ham instead of hand.   

Modifications to the Map:  Lily's maps have been stable for quite some time. At this visit, the T and M levels were globally increased approximately 5 cu's on both sides. 

COMMENTS:    Lily continues to make exceptional progress with her cochlear implants.  She is now able to participate in closed-set speech perception tasks. On the NU-CHIPS, which is a task that required Lily to identify words with the same number of syllables, similar vowel and varying consonant, she scored 93%-100%  Lily is ready for a more difficult closed-set task at her next appointment. 

MacArthur Bates Word Inventory - 28.5 Months

For Lily’s latest scores on the MacArthur Bates Communicative Development Inventory (MBCDI), she was credited with 603 words. 

For girls at 28 months, this word score places her between the 75th and 80th percentile. These are normally hearing kids/girls - Whooo Hoo!!!   The MBCDI ends at 30 months of age – and they see ceiling effects (kids are learning lots of words that are not represented on the scale). 

While this is not a test of overall language proficiency, speech or listening, it is a very interesting measure in language/vocabulary growth. 

Very Thankful

We are so thankful this year for all the blessings we've been given.  Lily is thriving. She is talking, listening and is a very happy kid.  She says funny things, is sensitive and passionate.  She is a typical two year old, except we think she is brilliant, beautiful and hilarious.  So we are biased. 

We are thankful for all the support our family and friends (who are like our family too) have given us and all the love they give to Lily.  We are also thankful for all the professional support we've received this year.  Lily's team members have become our life long friends and we are glad to be on this journey with you.    

Happy Thanksgiving. 

Baby Lab - 28.5 months

I can't believe that Lily's had her Advanced Bionics Cochlear Implants for 18 months already.  She speaks very well and non-stop these days. 

Lily comes up with original thoughts, long compound sentences and can make up complex pretend sequences which are amazing Mary Pat in the Babylab. 

Here is our latest report.

1.  Lily built off mom's model and asked her first "why" question in the lab.

2.  Great job of supporting "thinking and feeling" words and supporting Lily's recall (remember when...)

3.  I heard her talk about "pretend" using the word for pretend.  Wow!

4.  You support her imagination in such interesting ways.  She is captivated when you pretend together.

5.  She is able to navigate this pretend world with your support, which results in a lot of talk not tied to here and now. 

6.  What interesting problem solving - sit on Mommy's lap to avoid the truck traffic.

7.  Very diverse vocabulary use - (neighbors) - with a lot of specifics.  I heard many adjectives today in her noun phrases. 

8.  Very positive to hear the speech clarity.  Her words are well formed.  Blends at the end of words - whoops and ones (nz)

9.  We are hearing additional colloquial expressions.  Whoops! yup..there ya go. 

10.  Continuing to increase utterance length. This is just magical to watch.

11.  Lily said "by himself."

12.  Think about acoustic highlighting on /h/ (in here)

 

Daddy, I Want Play Baby Lab

Last night Lily rushed into the house saying "Daddy, I want play Baby Lab." She asked me to put on her "vest" and get her babies. At the baby lab in Boys Town Lily wears a vest that has microphones built into it so that Mary Pat and gang can hear and record her utterances during the lab. We found a vest and went to our play room. She then told me I was "pretend Mary Pat" and we had a grand time playing games and practicing saying words. Who knew speech therapy could be so fun ;-) 

Baby Lab - 27 months old

Here are the results of the latest Baby lab study.  Lily got some rave reviews!  She also wore her pink tutu for our trip to Omaha, so maybe that helped her chat it up.  Mary Pat said no other kid had ever shown up with a pink tutu.  We thought it would make studying Lily's tape a little more exciting for the researchers.  :)

1.  Lily was such a chatterbox today.   [Is that the highest complement or what?]

2.  Asked lots of questions - who? what that?  what do?  which one? where barb (outside here and now)? Where Goofy? What do now? What wrong? Mommy?  Yes/No (Mommy you want a feed her?)

3.  Vocabulary explosion very evident in number of different words and concepts she is using.

4.  Another nice jump in speech skills.

    -  prosody (sure!)(counting rhythm)

    - well formed words - the average for 2 year olds is 50% intelligible; we understood >90% of multi-word utterances.

    - producing blends in lots of words.

    - nice use of ending sounds in words (can be a challenge at this age)

    - beautiful repertoire of consonants

5.  Exploding grammar

    - plurals marked

    - + ing on verbs

    - verb phrases (I'm making sausage)(want get)

    - all multi words utterances

    - tons of multi-word utterances

    - joining words "and"

    - S+V+O

    - Two verbs in lots of her verb phrases

    - Expanding pronouns (her, us, me, he, that, it)

6)  She's strategically copying Mom for new ideas (it seems)

7)  Discourse is getting colloquial "Sure" Whoops! others

8)  Mom - outstanding interactions - Airplane pretend sequence is a classic!

426 Words +++

We've just finished filling out the MacArthur-Bates word inventory and identified 426 words that Lily knows and says.  Then of course there are hundreds of words she says that aren't on this list.  It was only a few months ago that this new word inventory seemed overwhelming.  Now it is easy to see the words she doesn't know on this list, because they are getting fewer and fewer. 

Of course learning language is never ending.  Found a word in a WSJ caption last week that I couldn't even pronounce, let alone understand.  Not sure where a kid with normal hearing would be on the word inventory list, but we're pretty excited for Lily on soaking up all this vocabulary. 

It's hard to know the words Lily knows and doesn't know.  We played "what is this" for hours today because it was so rainy.  Lily kept asking for "More."  We'd run from room to room to outside to the basement to the garden and everywhere in between asking "what is this" and "what am I doing" or some version of that.   I am sure the neighbors thought we were nuts.     

Baby Lab - 25.5 Months - "Curve Buster"

Since we returned from the Moog Center, Lily's language has exploded.  She went from one and two words, to three, four and five word sentences.    The Director of the Baby Lab Study called Lily a "curve buster," meaning that Lily is doing extremely well and "busting the curve" in her research study.  We'll take it!!  Here is the report from the Baby Lab yesterday.

1.  Mom reports major explosion in utterance length and we observed the same today.
    a.  Moog School strategy of requiring imitation of Mom's expansions and that worked.

2.  Observations today:
    a.  Nice changes in clarity of speech - Majority of words understandable and most were in multi-word phrases, which is really cool.
    b.  She is breaking into grammar big time.
          1.  a + noun
          2.  Pronouns (I, her, me)
          3.  noun+verb+object (I want cake)
          4.  all/"doin" (ing in natural form)
          5.  Location terms (on bus Mommy)
          6.  Nicely formed questions:  Where shoes go?  What's dat Mommy?  Yes-No with Nice inflections!
          7.  New function words "it" "a"
          8.  Plural endings!  Toy+s, Boot+s
   c.  Major growth in Vocabulary and range of concepts expressed.
   d.  Unbelievable pretending.  Imagining raining and running away.  Putting on pretend sunglasses.  Assigning roles to mom.
   e.  Lily using desire terms (want, need)
   f.  Mom's input is so ideal; I notice how well you shape her utterances so naturally.
   g.  Natural expressions; hey, nope.
   h.  Quality of comprehension.  WOW!  "Tap" the cup, make the cup "fly" and "smell" the shoes.

Baby Lab Transcript - 24 months

Here is an interesting language sample during the Baby Lab from which the researchers are able to dissect Lily's language.   We play in a room full of toys, including a play kitchen.  You can see lots of language learning "strategies" in this discussion including repetition, reinforcement, expansion, and clarifying.   You can also see I use a lot of "wanna" and "gonna."  Is that my Midwest accent?   Note to remember:  Speak better when being recorded in the Baby Lab.

M Do you wanna get some food out?
C baby.
M Oh baby.
M Should we get some food for the baby?
+ Lily understands and goes to cabinet.
C out.
M You remember.
M you remember where the food is.
C out_out_out.
M Oh you got all the food.
M What do you see in there?
C [o].
M hmmm.
C oh_no {/a:no/}.
M Oh no!
C hmmm.
M What/'s that?
C X.
M Is that chicken?
C X {/IshIn/} {holds up cone}.
M ice_cream!
M Do/3s a baby eat ice_cream?
C yeah.
M Yeah?
C baby {heads to feed baby}.
M Here baby.
M What kind of ice_cream is that?
C X.
M Is it strawberry?
M Or is it chocolate?
C X {nice attempt at chocolate /tautau/}[pcf].
+ giggles and shows mom what she found.
M You found>
M Ope that/'s the chicken.
M It look/3s like chocolate, but it/'s chicken.
M Hey what/'s that?
C X {popcorn /paupau}[pcf].
M You/'re right, it/'s popcorn.
M oh maybe baby want/3s popcorn.
C there go {dE go} {hands to baby}.
M There you go baby.
C X {aIshIn}[pcf].
M Ice_cream.
C there.
M there.
M Okay what else for baby?
M Anything?
C wash {very clear}.
M you wanna wash?
M Okay wash the dish/s.
C hmm.
C no.
M No?
M You just gonna put it down?
C soup_soup_soup {with sh}.
M Uh_huh you are very strong.
C soup.
M soup?
M you wanna make some more soup?
M Here you can pour the little soup into the big soup.
M You are right, yep {commenting on her placement of dishes}.
M I wonder if there/'s any spoon/s?
M Hmmm.
M Here, here/'s a spoon.
M anything else?
M Oh you got them out again?
M Did you wanna put it in this side?
M Op Lily look.
C Hmm.
M What/'s that?
C egg {final consonant omitted}.
M Egg, you/'re right.
M Should we cook the egg on the stove?
M Oh you/'re gonna put it in the microwave?
M Good idea.
M That/'s where mommy make/3s her egg/s.
C mmm.
M Is it all_done?
C all_done [im].
M All_done.

Baby Lab Update - 24 Months

The update of the Baby Lab came this time as an extensive report.  It confirmed what we knew, that Lily’s expressive vocabulary is rapidly growing and that she is "very tuned in to word learning."  We are so grateful to be involved in this study.   It is also interesting that this language sample was a few weeks ago and Lily's language has already changed so much since then. 

Here is a Communication Sample Description from the report:

Lilly communicated frequently during the play session with her mother.  A language sample transcript was prepared based on 15 minutes of their interaction.  This provided 271 maternal utterances and 105 child utterances. 

1. The majority of Lily’s conversational turns consistent of words and word attempts.
2. Although most of her utterances were single words, she produced ten 2-word combinations, and one 3-word combination.  Near the end of the session, Lily produced additional 2-word combinations, such as cracker down (to report that the cracker fell down), want it (to answer do you want it?), more mommy, and Mickey Donald (to request toys).  During our last session (6 weeks ago), Lily was not yet combining words, so this is a fairly recent development.  There were several instances of chaining of words, as well.  This suggests that Lily is moving toward the two-word stage.
3. It was notable that Lily is appropriately answering a variety of questions.  Today these included:   “Who/What is that? What color is that?  Do you want…? Where does this fit? How many do you want?”  Lily’s mother remarked that her daughter is increasingly conversational, able to take turns and answer questions across several exchanges.  Lily has learned to count and name colors.  She has begun to use spatial terms (off, on, back, front). 
4. Lily uses /hmm/ for a variety of purposes.  She sometimes seems to be taking a turn, commenting or asking for information.  Today’s sample contained 24 examples of these.  She is using these less often than we observed in the session 6 weeks ago.
5. Lily produces a wide array of consonant and vowel sounds in her word approximations.  She often simplifies two syllable words to cvcv forms (like papa for popcorn or dEdo for there go).  She marks some words with final consonants (nope, out, wash).  Usually words with final consonants ended with /p, t, n or sh/.  She is producing some appropriate diphthongs in familiar words. 
6. Lily spontaneously imitates some words and simple phrases.  It was interesting to observe her imitating both the prosody and the phonetic content of some models.
7. Lily attempted blend production in flower (fwawa); she produced a fricative on the end of blocks (bash). 
8. Lily has begun to refer to herself by name, using an n/l substitution.
9. Lily demonstrates strong play skills; she engaged in sequences of feeding baby dolls and she cooperated with her mother in going on an imaginary car ride. 

Lily’s mother provides a language rich environment for her daughter.  It is a pleasure to watch the number of strategies she uses to expand Lily’s utterances, promote thinking, and encourage conversation.  Lily is clearly benefiting from the language input provided by her family.  Lily responded readily to comments and questions, showing that she is able to comprehend auditory messages with ease. 

On the communicative temptations of the CSBS, nearly all of Lily’s communicative messages were words.  She commented (that, mommy Lily, yellow, Donald, wet), requested (more, bubble, blow), answered (Do you want bubbles?…no, Mickey), and used social phrases (thank you).  It is encouraging to see the increasing concepts and ideas that Lily is able to convey as her language skills advance.  Lily is making excellent progress in response to her family and her intervention programs.

Boys Town Cochlear Implant Run

We survived the Boys Town Cochlear Implant Run.  Lily's Dad ran the five-mile race and the rest of us walked the one-mile race, very quickly.  Then it was off to face/arm painting (a first for Lily) and a visit with our audiologist Jeff who was staffing the information booth.  Jeff is a pro.  He always answers all of my questions very seriously, including those I start with, "Is it true that...? and I read on the CI Circle that..."  

A couple of pictures to summarize the day. 

Cochlear Implant Mapping At BoysTown

Lily had her mapping appointment yesterday to adjust her computer program to make sure she was getting access to all sound frequencies. The map is remaining pretty consistent between visits which is good news. We have been going fairly regularly, first a mapping every month, then every three months. Now we're not due back for six months. The best news though is that she's consistently responding to speech sounds in the sound booth at 20 decibels and tones between 20 and 30dBs. 

To test the levels they pump either a voice or a specific frequency tone into the booth and watch to see if she responds by looking in the direction of the sound. When she responds the operator activates a visual stimulus to reinforce the action. In this case a dancing Minnie Mouse or Winnie The Pooh doll. Lily quickly mastered the game and by the end was saying "Minnie" or "Pooh" when she heard the tone in addition to turning to the sound. Our trip to DisneyWorld earlier this year is paying dividends.

Here's a pic of Lily and Mom in the booth taken on the closed circuit TV that allowed Dad to watch what was happening.

Baby Lab - 22.5 months

The Baby Lab was great today.  Here is the report.

1.  CVC - Consonant Vowel Consonant in bus and pot for spot. 
2.  Using sh in syllables - we just started hearing sh last time.
3.  Noticed a lot of nice answering no, yeah, a word instead of hmmm.  Starting to build a conversation. 
4.  Ki (pig) gigi for chicken.  Starting to hear more back of the mouth sounds.
5.  Used an f in imitation of Farmer Fred (fwr- fred : fwawa - farmer.  Making correct syllable numbers. 
6.  Words and word attempts are more frequent than babble. --  This was very interesting. They said kids start by babbling and incorporating a few words.  Then they move to mostly words, incorporating a few babbles.  Who knew?
7.  While playing with the barn, Lily was attempting word combinations (not yet clear to us.  Consonants dropping out in longer strings is natural)
8.  Such nice expansions - She says hat and you give a model and immediately "stretch her taffy."   So natural and fun to watch. --  Mary Pat calls expansion  stretching or pulling the taffy. 
9.  Vocabulary continues to explode.  Yeah!!

Great Day!

Boys Town Memorial Day Run - Join Us!

Every year Boys Town National Research Hospital holds a Memorial Day Run to raise money and awareness for its Cochlear Implant Center. It's a really well run event with over 2,500 runners and walkers. There's a Children's 1-Mile Fun Run, a 1-Mile Walk/Run and the 5-Mile Walk/Run. Here's a Memorial Day Run Video from the event.

Last year, we met several friends and pushed our kids the 5 miles in their strollers. This year, I've decided to take a run at the run, while Lily and her Mom will likely gather a group to walk the race. It's a really fun time with children's activities and trophies for winners. Here's a pic from last year where Lily got to say hello to Dr. Lusk, her CI surgeon.

If you'd like to participate or donate, here's the registration link. Hope to see you there!

Baby Lab Report - 21 months

Another good baby lab report.  Lily was really tired, but amazingly enough she used more words than ever.  Here is the summary:

Wonderful talkative session.

1.  Majority of spontaneous talk was words.  The words are getting clearer (opa has two syllables now - open, more = consonant + vowel, Minnie was close, etc.).  Likes telling you what she sees and does; names ojects and actions. Uses words socially - hello, yeah/no

2.  Diversifying vocabulary (dad vs. man vs girl vs Minnie)  Maybe emerging chains (a: boom)

3.  Vocabulary is exploding - Mom counts 70+ words expressively.

4.  Starting to hear fricatives (sh) - horse (shush)

5.  Jargon sequences (foreign language sounds) are cool.

6.  Comprehension is great. She identified 24 objects + verbs today!  Wow!

The Bliss of Blogging

We attended a S.E.E.D.S (Social, Emotional, and Educational Session) workshop held at Boys Town last week. About once a quarter a workshop covering a variety of topics facing parents of children with hearing loss is held. One of the topics this time around was "The Parent Factor: Taking Care of Mom & Dad." The session was an opportunity to talk with parents and professionals about the tips and techniques we've used in getting through the tough times. 

One of the things that seems to have worked for us is this blog. There's something comforting in sharing what you're going through with others and keeping our friends and family close to this amazing little girl. We started as a way to document Lily's life to give her something when she got older as a testament to how far we've all come. We love hearing our friends reference or comment about what they've read on the blog. It makes us feel good to know that what we're writing about is interesting to others as well. Along the way we've also met people from all over the world who've read Lily's story, some seeking advice, others offering words of encouragement. All in all it's been well worth the time and effort. So keep the comments, suggestions, and feedback coming and we'll keep spreading the Bliss. 

Audiology Visit - 9 months out

Went to a mapping appointment yesterday to check Lily's CIs.  We started by going into the booth and testing each side individually.  Results were 20-35db, depending on various sounds, noise levels and speech.   The 35dbs came on Lily's  right side when we think she started ignoring the sounds.  So all in all, improved from last time about 5-10 dbs.  I always suggest turning her CIs up.  However, our Audiologist said that Lily was hearing in the optimum range (20-30dbs) and that since Lily is bilateral, it is louder when she has both of them on (bilateral summation).   The Audiologist also said that below 20dbs there is not much to hear and that the noise can actually interfere with speech perception which comes around 45dbs. I'd still like her to be hearing at 20dbs or better for all sounds.  Maybe next time. They tweaked her maps just a little in the high pitches.  We are returning in three months, then six months and then yearly or as needed.  The picture below is of Lily and her Mom in the sound booth. We again had the opportunity to have Lily's appointment online so friends and family could watch. So cool. Think of all the possibilities this creates.