Tuesday, February 28, 2012
Tomorrow morning we will be checking Hannah into the New York Eye & Ear Infirmary around 6 am for her bilateral cochlear ear implant surgery. She will be 9 months and 9 days. When I was pregnant for 9 months, merrily picking out all of her baby items and dreaming about how I would be enjoying the days with my new baby, never did a five-hour surgery ever come into play. It will be a long, long tough day for us, followed by lots and lots of hard work but we will also enjoy many milestones and exciting days
Fortunately, Hannah isn't sick and this surgery will give Hannah the very best opportunity to do everything she wants to do. I often think what Hannah's life would be like if it weren't for cochlear implants, what are life for our family would be like. It certainly would be a whole lot different than the one she has to look forward to.
We are so lucky we live in this time when this miracle is available and Hannah will only know that she can hear, that she can sing and dance and be like every other child. We made certain Hannah is under the best care with her team at NYEE - Dr. Alexiades, her audiologist Megan and her speech therapist Liz as well as Jessica at CHC and her little friends and teachers at The Clarke School.
We were also reminded this week just how loved Hannah is by her family and friends. She has an entire nation of people rooting for her. Thank you all for your calls, emails, texts and cards. They are deeply appreciated and we will read them to her very soon. I know she will love to hear from you.
Tonight we carefully packed up her softed pajamas (she can't put on anything over her head for now) and her favorite stuffed animals - her puppy Murray, her kitty Lila, her monkey and of course Elmo to help in her recovery.
I just hope and pray Hannah can feel our love and spirit and that will ease any pain and give you comfort. I also hope and pray Hannah's beautiful smile and laughter will wash away any anxiety when we see her.
This time tomorrow we will be done but we have to get through the day. It is a milestone day, but it will be a tough one. Today is just Day 1, a moment of her life and the very start of amazing things in her life.
Sunday, February 26, 2012
I took my first flight on Eastern Airlines when I was in the third grade. My aunt took me to Disney World. All I remember about that flight was we munched on lifesavers to pass the time. While going on a family vacation to Florida seems like a right of passage for every child, taking Hannah on her first trip was truly a grand adventure for us. The world and traveling is so much different than it was back when I first went, but life's simple pleasure remain the same. It was a great time visiting Mom mom and Pop pop and it was especially great to take Hannah to so many fun things right before her surgery. Seeing her big smile and her zest for life always makes the difficult days easier. She's such a little trooper.
First of all, she did great on the flights, especially on the way back to New York as we were bumped up to first class. We brought a deluge of toys, but she seemed content watching out the windows.
I love flying
Hannah had a lot of firsts on our trip and she kicked off the week with a huge milestone-- she did a full out crawl. She also drank from a sippy cup, read her first financial journal (hey, someone has to take care of us) and took a dip in the Atlantic Ocean and the pool. This city baby is still more comfortable at Saks and taxi cabs than the the open water, but I'm sure we'll have plenty of practice before she's a little swan.
Moving and Grooving
Life's A Beach
A close-up of her Pebbles-esque swimsuit. She's missing the matching ruffled skirt.
We also enjoyed taking Hannah to Gumbo Limbo Nature Center, Lion Country SafariandMorikami Museum and Japanese Gardens. Lion Safari in West Palm Beach was a pretty cool place and I would highly recommend a visit if you are ever in south Florida and you have little kids. You drive in your own car at your own pace along a four-mile loop to see wild animals. Obviously you will see lions, but there are also lots of ostriches, zebras, hippos and some monkeys. After the drive, you are lead to a huge park that has lots of little parks like a petting zoo, water park, a sprinkling of rides. One of the highlights was when Hannah got to feed the giraffes. We walked up to a raised platform, purchase a few pieces of Romain lettuce and waved the lettuce to the giraffes. Hannah had no fear of the lettuce (she tried it first) or the giraffe. Maybe it's all the time she spends with Sophie.
Hannah and the real Sophie
It was so great spending time together in Florida. Life has been busy and it's so important to take a step back and just enjoy our little girl. It was so amazing to have Michael with us this week and listening to Hannah squeal and just light up in pure delight with her Daddy was just music to my ears.
Thursday, February 16, 2012
Hannah's surgery date is less than two weeks away. It has been an event we have been waiting for for about seven months and a date marked on the calendar for about six weeks. We took the final step today for the surgery- the pre-op blood work. We walked from therapy the nine blocks to New York University. Taking her to the hospital to have blood drawn is never easy. It's something you don't expect to be doing. She woke from her nap to find two very baby-friendly medical assistants poking at her chubby little arms for a vein. It took awhile to find one, but eventually they were able to get a blood sample.
While the implants will be a new journey for us, another one is coming to an end. We picked up the last of her ear molds today for her hearing aids. We took trip downtown this afternoon to The Center to make sure they fit. They are pink and sparkly. She won't need ear molds once she has her implants on since she will be wearing a body worn sound processor as opposed to one that's worn behind-the-ear (BTE). She will be starting with Advanced Bionics' latest device called Neptune. I'm so excited for her not have anything in and on her ears. I think she'll be a bit more comfortable and we're beyond excited she won't be pulling on her hearing aids anymore. They make such a yummy toy for Hannah.
All of this is so worth it. Hannah is proving to be one smart little girl. This morning at speech therapy with Liz, Hannah was really amazing. Hannah started her session with Liz playing a note on the sing-a-long piano and at the same time singing out a "la" to go with each note. When Liz was finished with singing her note, Hannah would hear the silence. We hoped Hannah would understand this silence to mean it would be her turn to speak. That would indicate Hannah heard the sound, recognized the sound ended and figured out it was her turn to speak. Well, much to our delight, Hannah was a regular Pavarotti, showing off her "turn taking" singing skills with Liz. And it got even better. Liz played with different tones so her voice eventually got a little higher. We think Hannah's heard the differences in Liz's voice because each time Liz changed the tone, Hannah responded with the corresponding pitch. Liz was so impressed she wanted to record Hannah's shining moment on the video camera, but her machine wasn't set up correctly. It really seems Hannah was enjoying herself this morning, really chatting up a storm. It never stops to amaze me when Hannah detects sound, grasps meaning in them and uses her little voice to let us know she wants something. It's something I never thought about before but I sure know I will never take advantage of again.
Hannah gets a report card from Liz after each session. Here is what Liz said after today:
"Highly verbal session with extensive back and forth with syllabic sequences with: la, ya, ba and vowels. Definitely using speech to make something happen. Spinning toys and musical playground elicited sustained attention. Also able to demonstrate some association with "Learning to Listen sounds (esp. Sophie (lalala), cow (Mmmm) and /aaa/."
While having to go for the blood work and make another trip downtown is not exactly how I wanted to be spending my day, having the morning start by listening to Hannah giggle and be so chatty (and her pretty smile) makes it all worth it. She only stands to hear so much more with her cochlear implant, which will make her that much more confident in her life.
Wednesday, February 15, 2012
Tuesday, February 14, 2012
Ever since our eyes met almost 9 months ago, I am madly in love with you. You have become my whole world. I never knew I could feel this kind of love, but you took my breath away and transported me to another place. I am loving every moment, every day we spend together. Your sweet kisses and your tight hugs, the way you smile when someone is looking at you, the squeal of delight every time you see Sam. Your courage, determination and your zest of life simply amazes me. Hannah you are so loved by me, your Daddy and your whole big family. You are perfect and everything and more that we dreamed about. We love you!
Thursday, February 9, 2012
Last Wednesday, Michael was able to attend one of Hannah's therapy sessions. We were lucky enough to have Liz available in the evening so her Daddy could see how hard his little girl is working. Hannah started her therapy session a few minutes before Michael got there so Liz had him knock at the door. When Hannah turned to see him, she was at first slightly confused to see him at her place of work, but quickly enjoyed showing off to her Daddy.
Daddy's little girl.
Liz told us that Michael's deep voice would be easier for Hannah to hear. It's upsetting to know that your little girl can't hear you sing to her, talk to her as clearly as you hoped, but soon enough her cochlear implants will hopefully change all of that.
We again worked with the surprise drum that had the six different "learning to listen" sounds - the ball, the baby doll, Sophie, the boat, the dog and the cow. When she reached for the boat, Liz said, "Toot" to Hannah and eventually we heard a new sound from Hannah. She gave us an "oooo" when she was playing with the boat. It was a very exciting moment indeed.
Hannah also played with a sing-a-long piano like the one below. After we LaLaLa'd along with some of the familiar songs, Hannah began to explore the toy. Michael talked aloud as if he were Hannah, which Liz really liked. She said by talking to Hannah using words and sentences as if she were the one doing the talking would expand her vocabulary by introducing lots and lots of descriptive words.
Hannah's musical piano.
It was so so great having Michael attend Hannah's therapy session. Hannah's sessions are during the day which make it difficult for Michael to attend them a consistent basis. He works long hours each week, working hard to make sure we have everything our family needs. I know how much he's looking forward to hearing Hannah call out Daddy and explaining to her the virtues of The Grateful Dead and The Yankees!
Tuesday, February 7, 2012
Hard to believe, but Hannah's busy schedule just got even busier. Michael and I decided to switch her speech therapy to New York Eye & Ear (NYEE) from The Clarke School. There were several reasons for the switch, but mostly because Hannah's therapy sessions at NYEE are now an hour long from a half an hour and her audiologist Megan and Dr. Alexiades also are a part of NYEE. I like the team approach. Her speech therapist at NYEE is Liz and she comes with over 40-years experience working with hard of hearing kiddos. When she first greeted Hannah on our first day, she said to Hannah, "Let's go to work" I felt we were in great hands that will help Hannah learned how to listen, hear and speak.
So now her schedule is Monday and Wednesday from 9-10 am with Jessica at CHC, Tuesday from 10-11 am and Thursday from 9-10 am with Liz at NYEE and Fridays mornings from 9-10 we continue at The Clarke School for group therapy with Sara and Cassie. Both Jessica and Liz are really special and amazing for Hannah. They both take cues from Hannah's playing and gear the session to what Hannah is saying or doing. It amazes me each time how simple toys like a push-toy with balls can spur so many words.
The tumble and twirl toy below is one of Hannah's newer favorites. A fun, colorful toy like this will teach Hannah words like "push", "stop", "eyes", "butterfly", "wee" "open", "shut", "ball", "in", "out", "up" and "down" as well as some colors and numbers.
Today, during our session with Liz, Hannah explored a range of vocalizations (al, lala, jaja, mmm) when paired with play routines. She primarily responses to low frequency sounds like banging, but it is our hopes this will change and Hannah will also hear the high frequency sounds like Ssss so she can say her big brother Sam's name. One of our goals is to pair changes in the duration and syllable number to everyday routines so Hannah can understand the differences in rhythm. Another goal is to wait for any type of vocalization from Hannah so she displays her intentions for a desired actions like picking up something that has fallen.
On our second visit with Liz Hannah seemed to comprehend the word "bang". Liz hid a number of toys, including Sophie, the beloved giraffe, Pluto the dog, a baby doll, a ship, a ball and a cow into a vintage (1979) Fisher Price drum. Liz would help Hannah open the drum and Hannah picked out which toy interested her. Liz assigned a sound, bark for the dog, LaLa for the giraffe and so on. In between each toy, Liz would shout out, "Bang, Bang Bang" and would bang on the drum and Hannah copied. On about the third or fourth toy reveal, Liz said bang bang bang and Hannah switch gears and went back to the drum and banged on it. It was pretty cool.
Vintage toy drum used in today's session with Liz available on Etsy.com
Hannah has always had a very long attention span and it really is amazing to see her so focused during these hour-long sessions. I don't think my high school or college classes were an hour and I do remember watching the clock on several occasions (especially during math classes) and wondering when the bell will ring. She can play with a single toy for about a half an hour before she gets bored and want to move on to something else.
I never expected to spend my first year as a new mom taking my baby to speech therapy each morning. There are some early mornings when I just want to sleep in and put the covers over me. But these next few years are so critical for Hannah's speech and language development, I wouldn't think of missing a day. I am and will always be thankful we live in New York City where Hannah receives the best care - we see the best therapists, audiologists and doctors and have every opportunity to succeed.
Monday, February 6, 2012
It's been a busy couple of days.
Now that Hannah's surgery date is set (Wednesday, February 29th) and her cochlear implant device is selected (we are going with Advanced Bionics), Michael and I breathed a little bit easier this weekend. Difficult decisions are always hard and they are made even harder when you are talking about your 8-month baby and picking out a medical device for her that she will be wearing for the rest of her life. We felt much relief that we crossed that hurdle and are excited for what's in store for Hannah. Although I almost feel I'm past the panic/overwhelmed stage and ready to run with this, I'm sure there's going to be moments (hopefully not many) in the days ahead where I'm anxious but I can't wait for Hannah to experience sound.
On Friday, at group Hannah reached another milestone. HANNAH CRAWLED. Well, I wouldn't exactly say she would take a gold medal just yet, but she did make it a few yards. There were a few toys that were left unattended and Hannah saw her opportunity and went for it. I like that in my girl. She got up on her knees, surveyed the land, then dropped and sort up dragged herself "wounded soldier like" to the toys. It sure was exciting watching Hannah "Go, Go, GO" but I'm sure this new stage will really keep Michael and I (and Sam too) on our toes (and paws).
I'll have a video shortly. I just can't figure out the technology aspect. Yet.
Saturdays are my favorite days of the week. I used to look forward to Saturday afternoons because we could sleep a little later, spend a little more time at the gym and meet friends for brunch. Now I treasure our new Saturday rituals. We take Hannah to her music class with Ashley at Three Little Birds. Each week, we take a "ride" to a different state and explore its music. The first week we started in New York City and sang along to the Broadway musical Mary Poppins. I promised Hannah we would take her to see it (or whatever Disney production is playing) when she's a little older. On this Saturday, we were in Cleveland, Ohio and listened to rock classics like Simon and Garfunkel's "Feelin' Groovy", Chuck Berry's "School Day"s and The Beatles "She Loves You" and "Hello, Goodbye". I just love the music classes. Not only are they a special place where the three of us spend a great afternoon together, it's also an activity that is just a regular infant program and she is just one of the kids. Oh, and there is also the benefit for her hearing. During class, Hannah hears that different tones and pitches which is really beneficial for her. One of the sure signs we know she can hear Ashley is when a song goes from really loud to really quiet. When it gets really quiet in the room, Hannah starts to shout out Ahhhh as if it's her turn to sing.
Each week, Hannah also tries out a different instrument. This week Hannah ripped a chord on the electric guitar.
Hannah jamming on the electric guitar.
After music class, we head to Southern Hospitality for some lunch. This Saturday was extra special because Hannah joined us at the table in a high chair. She's getting to be such a big girl.
Is that milk?
Later that night, we got gussied up and headed to our second BBQ meal of the day. That's right, a day in the life of Hannah Rose. We celebrated Hannah's Grandpa's birthday at our favorite of the glutenous restaurants Neely's BBQ Parlor. Grandpa was especially excited to share his birthday with Hannah.
Hannah telling Grandpa we should celebrate his birthday every month like she does.
He even shared his Short Ribs.
Does this come with any sides?
Sunday Hannah got to watch her very first Super Bowl. How great is it that her team, The Giants, were in it and won! Woohoo!!! She watched the first half and even stayed up to watch Madonna perform the halftime show. Of course, Hannah helped Eli make those stellar passes.
Hannah studying up on the Giants.
Not a bad weekend for this very special 8-month old. We can't wait to see what this new week brings.