Have Baby (with CIs) Must Travel (with CIs)

When I notified friends and family that we were planning a trip to the Amalfi Coast this summer, several people voiced their concerns. “A vacation is not a vacation with a baby – it’s just a trip,” one friend told me. “You aren’t going to sleep because the baby won’t get used to the time difference. Above all – you won’t be able to enjoy your vacation!” Another friend told me that we should not go this year because of Sonya’s surgery. “She could get an ear infection,” she warned “And then you would be in a foreign country with a foreign hospital and foreign doctors!” These concerns had an impact on me. Rather than feel excited about our trip, I increasingly felt anxious.

Prior to leaving, I consulted with our team of speech therapists, audiologists and surgeons. The overall consensus was that we should ABSOLUTELY travel with Sonya. “You need to take time for yourselves and enjoy being a family,” our EI service coordinator wisely told me.

For two and-a-half weeks, we toured Amalfi, Capri and Positano, Italy. It was not an easy trip (especially given that most of these towns were not stroller friendly) – however – it was one of the BEST trips I have ever been on and I know I will cherish the memories we made for the rest of my life.  That said, traveling with a baby is difficult. Traveling with a baby who has cochlear implants (I think) is even more challenging – so here is a list of tips that I hope others in our situation will find helpful!

Forget the stroller – bring a baby carrier instead: Note – this tip is particular to the Southern coast of Italy where the streets are typically paved with cobblestone and cities are built into the hills with hundreds of stairs. The stroller was most helpful in the airport – but aside from that time, we didn’t really need it at all and it collected dust in our hotel room. We used the Ergo Original Baby Carrier – which was comfortable and very easy to use.

We also decided NOT to bring a baby backpack. Lots of people recommended we do so – and we even borrowed one from a friend before our trip. We finally decided against it since we were bringing so much stuff already. We didn’t miss it.

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Enjoying the view in Positano, Italy

Get on a schedule as soon as you can (but be flexible): This proved critical for acclimating to the time change. Our schedule revolved around three nap times (one mid morning, one early afternoon and one before dinner). We also kept Sonya from sleeping more than two hours per nap, to help her get used to the time change. It only took two days for her to adjust.

Of course it wasn’t possible to be strict about the schedule either. A few nights, we kept Sonya out  so that we could enjoy dinner with family. It made me nervous to do this, but we allowed her to sleep in the next day – and I didn’t notice much of an issue in terms of her happiness when we did this occasionally.

Bring extra batteries (battery powered and rechargeable) for CIs: We brought two extra pairs of CI batteries that were rechargeable and two extra pair of batteries that were battery operated, to ensure that we wouldn’t need to disrupt Sonya’s ability to hear. I suggest packing batteries in at least two different containers just in case one gets lost.

Bring the waterproof kit/waterproof box for processors/coils: Every day we spent several hours at the pool or beach or on a boat. We (dumbly) decided not to bring the waterproof kit. I wish we had. That said, It is also a good idea to bring the waterproof storage box regardless just in case.

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Embrace cultural differences: Italians are the warmest people. They also LOVE babies. It seemed like every Italian we passed would look at Sonya and call out “bellissimo!” “principessa!”  or “bombola!” Many would go so far as to pinch her cheeks or hold her hand. At first I grimaced when this happened. But, eventually just accepted the fact that strangers were touching Sonya – and it was okay. Once I embraced this difference, I realized how lovely the Italian culture really is. So warm and affectionate! We Americans can be so cold sometimes…

Sonya and Sergio - a Porter at the hotel we stayed at in Amalfi
Sonya and Sergio – a Porter at the hotel we stayed at in Amalfi

Integrate speech therapy games into your vacation: One game that worked especially well was the “go go” game. In the pool, I would hold Sonya while Yan was a few yards away. Yan would repeat Sonya’s name until she turned herself to look at him (helping her to recognize her name). Once she saw her dad, Yan and I would both say “go! go! go!” as I gently bopped her in the water towards him. Then we repeated with Yan holding Sonya and me saying her name.

Now that Sonya can crawl, another game we played involved placing two different farm animals within crawling distance of Sonya. I would ask her, “which one says moo?” Sonya then would crawl (sometimes!) towards the cow. Sonya’s Ba Baba Lillian bought us these awesome farm animals, which double as pool toys. She loved them.

Bring your parents – if you can!: I would be remiss not to add that we did have Yan’s parents and sister at a hotel nearby. They were the most wonderful support while in Europe, and even watched Sonya a few nights so Yan and I could get some time away or visit places that were just not kid-friendly (e.g. Pompei). I think Sonya especially enjoyed having them there so that she could get that additional time to bond. A win-win!!

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Sonya and me with her Deda Eugene and Baba Lillian in Maiori, Italy

On Progress, Acceptance and Holland

Over the past few weeks, Sonya has made leaps in terms of her development. It seems like just yesterday she was a tiny bundle. Today, she officially started to crawl! I know our life is about to change drastically, but it is so exciting to see her make such great progress.

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Sonya at one week
Sonya last week as a flower girl at her Aunt Mariana's wedding
Sonya last week as a flower girl at her Aunt Mariana’s wedding – such a big girl!!

On the language front, Sonya is hearing and responding to sound much differently than just a few weeks ago. While in the beginning we were struggling to get her to simply notice/hear a loud sound, she has lately been emulating the sounds we make. This morning, for example, as I offered her some eggs, Sonya responded with “aye” the first sound in the word! Like many babies her age, she has started to do simple hand gestures like lifting her arms when she wants me to pick her up, but on occasion I have heard her say “uh!” for “up!” Interestingly, Sonya refuses to go to sleep unless she is wearing her implants. I carefully remove them as soon as she is in a deep sleep. She must be feeling very connected to the hearing world.

The Center for Hearing and Communication recently posted a terrific video where you can watch a brief moment from one of Sonya’s speech therapy sessions. Note – this took place several weeks ago – and I can already see the progress that has been made since that time – but it does give you a sense of the type of work we are doing with her amazing team of speech pathologists:

These days, I am feeling much better in general about Sonya’s well being. The implants themselves – which initially were difficult for me to see her with – have become such a part of Sonya that I don’t notice them at all. And when I do, I think they look rather cute. It brings to mind a poem that was sent to me by Shayna De Lowe, our cantor at Congregation Rodeph Sholom – and the mother of a son who also has bilateral cochlear implants. Cantor De Lowe has been an amazing support to me and my family. She also has an excellent blog focusing on her family’s experience here.

Prior to Sonya’s surgery, Cantor De Lowe sent me the below poem, which I love and re-read when needed.

Welcome to Holland … by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Three Weeks In and Five Observations

Five observations three weeks after Sonya’s cochlear implant activation.

Several weeks following Sonya’s initial activation and here are my thoughts:

1. Our experience has been very different from the many YouTube videos which portray the activation of a cochlear implant as some kind of miraculous event – in which one’s ability to hear can be turned on like a light switch. I have watched these videos over and over. They are so moving. I am not saying such videos are not authentic. But I do sometimes question the context. Was this truly the “first time” the person could hear? Or, was this the third or fourth mapping? In any case, our experience with Sonya was much less dramatic.

2. The real work is now. While Sonya may be hearing sounds, she doesn’t yet recognize them and is having trouble processing them. She must learn to listen for and identify every new sound – which requires intense therapy and practice at home. Interestingly, while Sonya used to be able to hear low register sounds with her powerful hearing aids, she now is reacting only to high register sounds (such as bells ringing or, the “sh” and “s” sounds). She will need to re-learn how to interpret and process low register sounds.

3. Sonya’s sleep schedule has changed. She is exhausted after her intense therapy sessions in the morning, and will often sleep 2-3 hours following. At night, however, after a day of stimulation, her brain may be having trouble shutting off – and she tosses and turns, unable to fall asleep. Apparently, this is very common for babies post-implantation. From what I understand, it typically takes about a month for babies to adjust to being able to hear.

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Sonya is exhausted after her daily speech therapy sessions.

4. I find myself questioning every movement she makes. Was it a normal developmental milestone or an issue that is developing post-surgery? For example, Sonya loves to sway her body back and forth. For several days we worried whether this adorable swaying might actually be a vestibular issue resulting from the surgery. Thankfully, we no longer believe it is the case – as it is clear that it is voluntary (she just loves to dance!)

5. Further to the above, there is a constant anxiety that I am not doing enough during the day to stimulate Sonya’s hearing. I try to emulate the games we play during therapy, but often Sonya’s responses are less noticeable. Am I speaking loudly enough? Am I using the right sounds? Am I doing this right?

Ending on a positive note – A recent coup was that we were able to adjust the size of the processors Sonya wears behind her ears. We attached the compact rechargeable battery rather than the full size battery. This allows Sonya to wear her implants without additional wires clipped to her shirt. Not only challenging for us to constantly adjust where the clips were placed, depending on whether she was sitting or lying down, Sonya can now move around much easier. Special thanks to my husband Yan and mother-in-law Lillian for pushing me to make that change!