We have used "Baby Signs" with both of our boys and we are SO thankful we have done so since infancy. Since Sean isn't hearing anything at all right now, he relies on sign language and speech reading (reading lips) to understand what is being "said" to him.
Obviously, the goal of cochlear implants is to eventually hear and become verbal, but Sean is deaf and will be for the rest of his life. It's a part of who he is. I feel that it's important that we raise Sean to be somewhat "bilingual!" Not only will we focus on auditory verbal therapy (AVT), but continue to use and learn sign language.
Saturday, June 30, 2012
Thursday, June 28, 2012
Blood Pressure
We are exactly one week post-op and feeling pretty good...so "I" thought. I should start by saying that Sean is doing well! He doesn't seem bothered by the inscision sites behind his ears. The swelling is down around the back of the skull, so you can actually see the outline of the implant so much more clearly. The only big changes we have noticed are behaviorally. He is MUCH more clingy and emotional, which is understandable.
So...Moving on to "mom" post-op! My employer, VBCPS, is offering an incentive this year called "The Wellness for Life" program. If you enroll, you earn $500 credit towards your health insurance for next year. To enroll you have to have your ht/wt, BP, and cholesterol done. So I enrolled today and of course the nurse does my weight first, (stressful b/c I've put on some lbs.); cholesterol second (thankfully this was awesome!), and then my BP. So, the cuffs on, machine is reading and the nurse asks how my summer has been! I, of course, fill her in briefly on Sean and his CI's, at which point the nurse says, "Wow." Thinking she is referring to Sean, I realize she is looking at my BP, which read 165/110!!! Holy crap, guess this momma is a little more stressed with this whole CI journey than I thought! My BP is usually 117/73, so this was crazy high! Let's try this BP again and a quick change of subject, "Butterfly House," where I will be this afternoon! Thankfully the next BP read was lower (139/94), still high, but lower! I SO need to get back to doing my yoga.
Thankfully the afternoon was stress free among the butterflies. My friend, Kathy, and I volunteer each Thursday afternoon at the Norfolk Botanical Garden, inside the Butterfly House! We have so much fun educating and sharing our love for butterflies! If you get the opportunity to visit NBG, be sure to stop by the Butterfly House! www.norfolkbotanicalgarden.org
So...Moving on to "mom" post-op! My employer, VBCPS, is offering an incentive this year called "The Wellness for Life" program. If you enroll, you earn $500 credit towards your health insurance for next year. To enroll you have to have your ht/wt, BP, and cholesterol done. So I enrolled today and of course the nurse does my weight first, (stressful b/c I've put on some lbs.); cholesterol second (thankfully this was awesome!), and then my BP. So, the cuffs on, machine is reading and the nurse asks how my summer has been! I, of course, fill her in briefly on Sean and his CI's, at which point the nurse says, "Wow." Thinking she is referring to Sean, I realize she is looking at my BP, which read 165/110!!! Holy crap, guess this momma is a little more stressed with this whole CI journey than I thought! My BP is usually 117/73, so this was crazy high! Let's try this BP again and a quick change of subject, "Butterfly House," where I will be this afternoon! Thankfully the next BP read was lower (139/94), still high, but lower! I SO need to get back to doing my yoga.
Thankfully the afternoon was stress free among the butterflies. My friend, Kathy, and I volunteer each Thursday afternoon at the Norfolk Botanical Garden, inside the Butterfly House! We have so much fun educating and sharing our love for butterflies! If you get the opportunity to visit NBG, be sure to stop by the Butterfly House! www.norfolkbotanicalgarden.org
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| Tiger Swallowtails visiting our backyard! |
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| Zebra Swallowtail visiting our backyard! First Zebra I've had visit our butterfly garden at home! |
Fun at the Virginia Zoo in Norfolk
We had a blast yesterday as we traveled to Asia (Trail of the Tiger), the newest addition to the Virginia Zoo! Our visit started with an up close and personal encounter with one of the tigers! And continued with an exciting train ride on the "Norfolk Southern." Blake insisted on seeing pretty much every animal in the zoo, so 3 hours later we were finally heading to the car! We skipped playing in the water fountains at the zoo this time because Sean wouldn't be able to get his head wet. Guess that will be something for our next zoo visit!
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| Wild animals! |
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| "All aboard!" |
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| Thankful for the glass that separated us! |
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| Sean enjoying the White Cheek Gibbons! |
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| "Dat!" |
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| Blake's I'm about to be attacked look! lol |
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| Orangutangs! |
Tuesday, June 26, 2012
Chesapeake Arboretum
Today we visited the Chesapeake Arboretum, a place I've been wanting to go to for a couple of years! While Blake was at Barefoot, Poppy, Sean, and I enjoyed a leisurely walk along the wooded paths. We enjoyed spotting and naming different trees, as well as throwing sticks and rocks into the stream! Many of you know of my passion for butterflies! Throughout our stroll, I found myself like a "kid in a candy shop," only I was excited for the number of Paw Paw trees, Sassafras, Spicebush...all host plants for specific butterflies!
Mikayla's surgery
Today was Mikayla's surgery for her left ear. Just got a text from mom that she did great and they are back home. We met Mikayla and her family back in December at the CHKD Holiday Hearing Loss party. Mikayla and Sean had a little pre-surgery playdate at the park last week! They are too cute together.
Monday, June 25, 2012
CHKD ER again?!! 101.1 fever...ugh!
Our biggest fear right now is the risk of infection at the surgery site. So when Sean woke up Monday morning with a temp of 101.1, we began to worry. I called the surgeon's office first thing and the nurse asked questions (Any drainage from surgery site? Any stiffness of neck?, etc.), all of which I answered, "No." She then phoned Dr. Moody. Within a few minutes, the nurse called us back with Dr. Moody's instructions, "Call your pediatrician, as it doesn't sound like it's from the implant. It could be a viral or urinary infection." I phone the pediatrician's office, who usually has mid-morning sick appointments, and it would be our luck that nothing was available until 3:30!
To add to the excitement I was run down yesterday with a sinus infection (which for those who suffer from these know that it can feel like the damn flu). {Side note: The day before Sean's surgery, I felt like I might be getting strep, so I went to my Urgent Care. Strep tests were negative, but thankfully the doctor was aware of what was happening for my son and prescribed me an antibiotic. }
So yesterday, I was in bed from 10-2 and only got up to fuel and get Sean ready for his doctor appointment! Thank god for Poppy, MeMe, and Grandpa Jennings, who helped out with the boys while I slept. Guess the stress has caught up to momma!
So our afternoon/evening turns out like this:
Pediatrician's waiting room 3:30-5:00p.m., with several other sick kids, WTF?!! Turns out the other doctor is on vacation this week, so it's up to one doctor to see all these kids? Long story short, we are finally seen around 5:20. Doctor does his check and checks Sean's ears for a possible ear infection. LEFT ear clear and RIGHT ear, "he doesn't like the look of," and wants to prescribe him an antibiotic. I share that he is already on the antibiotic, Cephalexin (sp?), since surgery, and gives directions to stop that antibiotic and begin with a script he wrote for Augmentin.
I'm pissed that after an almost 2 hour wait for our pediatrician, we get a brief "sick-check" and
because the doctor "didn't like the looks of Sean's right ear," gives a prescription for a totally different antibiotic and tells us to stop the other antibiotic. HELLO??? You've already shared with us that you have only had ONE other child with cochlear implants in your 20+ career and instead of recommending we go back to CHKD, you send us on our merry way with orders to stop the antibiotic given by the surgeon, and to start a different one??? Once in the car, my "mom gut" told me to call CHKD ENT's answering service and page the doctor on call. Thankfully the doctor called back within a few minutes and said, "If it's an ear infection, then that could be serious and Sean would need to be seen by us in the ER right now."
CHKD ER 6:00-9:15 p.m.
Needless to say, I am not feeling great while we wait, and wait, and wait! Following ER protocal, a nurse, and several doctors checked on Sean's ears not noticing any signs of infection, but would feel more comfortable having someone who looks at EARS all day long, take a look! One of the ENT doctors on Dr. Moody's team arrives and does a thorough check of Sean's ears and determines that there isn't any evidence of an ear infection. Yes, they are red and that is from surgery, but there isn't any puss pockets seen. So YEAH, for no ear infection, but he says, "What is concerning is what is causing this 101.1 fever?" If I had to guess, it's probably from the lovely germs that I'm carrying! Lucky for us we were able to get some motrin and head home instead of having to be admitted.
Thankfully today (Tuesday), Sean has had no fever!!!
Let's just continue to pray for NO infections and that the road will be pretty smooth for the next few weeks! Oh, and can we say hunt for a new pediatrician is a must?!! Preferably one within CHKD!
To add to the excitement I was run down yesterday with a sinus infection (which for those who suffer from these know that it can feel like the damn flu). {Side note: The day before Sean's surgery, I felt like I might be getting strep, so I went to my Urgent Care. Strep tests were negative, but thankfully the doctor was aware of what was happening for my son and prescribed me an antibiotic. }
So yesterday, I was in bed from 10-2 and only got up to fuel and get Sean ready for his doctor appointment! Thank god for Poppy, MeMe, and Grandpa Jennings, who helped out with the boys while I slept. Guess the stress has caught up to momma!
So our afternoon/evening turns out like this:
Pediatrician's waiting room 3:30-5:00p.m., with several other sick kids, WTF?!! Turns out the other doctor is on vacation this week, so it's up to one doctor to see all these kids? Long story short, we are finally seen around 5:20. Doctor does his check and checks Sean's ears for a possible ear infection. LEFT ear clear and RIGHT ear, "he doesn't like the look of," and wants to prescribe him an antibiotic. I share that he is already on the antibiotic, Cephalexin (sp?), since surgery, and gives directions to stop that antibiotic and begin with a script he wrote for Augmentin.
I'm pissed that after an almost 2 hour wait for our pediatrician, we get a brief "sick-check" and
because the doctor "didn't like the looks of Sean's right ear," gives a prescription for a totally different antibiotic and tells us to stop the other antibiotic. HELLO??? You've already shared with us that you have only had ONE other child with cochlear implants in your 20+ career and instead of recommending we go back to CHKD, you send us on our merry way with orders to stop the antibiotic given by the surgeon, and to start a different one??? Once in the car, my "mom gut" told me to call CHKD ENT's answering service and page the doctor on call. Thankfully the doctor called back within a few minutes and said, "If it's an ear infection, then that could be serious and Sean would need to be seen by us in the ER right now."
CHKD ER 6:00-9:15 p.m.
Needless to say, I am not feeling great while we wait, and wait, and wait! Following ER protocal, a nurse, and several doctors checked on Sean's ears not noticing any signs of infection, but would feel more comfortable having someone who looks at EARS all day long, take a look! One of the ENT doctors on Dr. Moody's team arrives and does a thorough check of Sean's ears and determines that there isn't any evidence of an ear infection. Yes, they are red and that is from surgery, but there isn't any puss pockets seen. So YEAH, for no ear infection, but he says, "What is concerning is what is causing this 101.1 fever?" If I had to guess, it's probably from the lovely germs that I'm carrying! Lucky for us we were able to get some motrin and head home instead of having to be admitted.
Thankfully today (Tuesday), Sean has had no fever!!!
Let's just continue to pray for NO infections and that the road will be pretty smooth for the next few weeks! Oh, and can we say hunt for a new pediatrician is a must?!! Preferably one within CHKD!
Sunday, June 24, 2012
Saturday, June 23, 2012
1st day at home
We were eager to leave the hospital and get home to the comfort of our family. Sean slept most of the drive home from the hospital, as well as off and on all day. When he was awake we were his shadow. Sean's balance was way off and we were so concerned he would bump his head on something. :) Thankfully we didn't have any serious falls. MeMe, Great Grandpa Jennings, and Blake joined us after lunch. It was nice to just hang out at the house, especially with the afternoon storm and torrential downpours we had.
Since Friday morning, Sean was sucking down the juice, which thankfully gave us lots of wet diapers. The next step is getting this boy to poop! Those lovely pain meds can back you up and we surely don't want to add that to the mix. Sean has enjoyed a little smoothie, some goldfish, and bits of chicken tenders, thanks to some thoughtful ladies at GCA.
Sam slept in Sean's room on the floor. Sean actually would prefer the floor, so that's where he ended up too! Thanks again to my fabulous husband, I was able to sleep in our bed for almost 11 hours!
Since Friday morning, Sean was sucking down the juice, which thankfully gave us lots of wet diapers. The next step is getting this boy to poop! Those lovely pain meds can back you up and we surely don't want to add that to the mix. Sean has enjoyed a little smoothie, some goldfish, and bits of chicken tenders, thanks to some thoughtful ladies at GCA.
Sam slept in Sean's room on the floor. Sean actually would prefer the floor, so that's where he ended up too! Thanks again to my fabulous husband, I was able to sleep in our bed for almost 11 hours!
Thursday, June 21, 2012
Wednesday, June 20, 2012
What exactly is a Cochlear Implant? And how does it work?
Here is a brief overview of how the cochlear implant device
works. A cochlear implant is a surgically implanted electronic device
that
provides a sense of sound to a person who is profoundly deaf.
Click on the link below for a short video to help understand how this amazing technology will help Sean to hear!
How Hearing with a Cochlear Implant System Works:
A cochlear implant system consists of two main components:
The internal component is the actual implant, which delivers sound to the hearing nerve. Here is a picture of what one of Sean's implants looks like. He has one implanted behind each ear.
The external component, which consists of a sound processor (worn on outer ear) and a magnetic headpiece (worn on the head).
We are thankful for the "added piece of mind" that will be a part of Sean's device:
"The remote assistant gives you confidence knowing that your child is
hearing their best. You will be able to wirelessly monitor and manage
your child’s hearing. Whether your child is watching TV with their
friends, or playing in the backyard, you have complete confidence at
your fingertips."
- Sound is captured by a microphone on the sound processor.
- The sound processor converts the captured sound into detailed digital information.
- The magnetic headpiece transmits the digital signals to the internal implant under the skin.
- The implant turns the received digital information into electrical information that travels down the electrode array to the auditory nerve.
- The auditory nerve sends impulses to the brain, where they are interpreted as sound.
Click on the link below for a short video to help understand how this amazing technology will help Sean to hear!
A cochlear implant system consists of two main components:
The internal component is the actual implant, which delivers sound to the hearing nerve. Here is a picture of what one of Sean's implants looks like. He has one implanted behind each ear.
The external component, which consists of a sound processor (worn on outer ear) and a magnetic headpiece (worn on the head).
We are thankful for the "added piece of mind" that will be a part of Sean's device:
The diagram below illustrates how a cochlear implant works by bypassing the
"damaged part" of the ear:
- Sound is captured by a microphone on the sound processor.
- The sound processor converts the captured sound into detailed digital information.
- The magnetic headpiece transmits the digital signals to the internal implant under the skin.
- The implant turns the received digital information into electrical information that travels down the electrode array to the auditory nerve.
- The auditory nerve sends impulses to the brain, where they are interpreted as sound.
Only 2 weeks until Sean's new ears are turned on for the very
first time!
Blog Name
Thanks to family and friends (on facebook) for the suggestions of a blog name! It was so hard choosing a name, but for some reason, "Growing by leaps and SOUNDS," really stuck out. Probably because that is what is going to be happening here this summer and years to come! Thanks Amber for the blog name!
Sean's "Team"
~Mom, Dad, big bother, Blake
~Poppy, MeMe, PaPa
~Dr. Moody-Antonio (CI Surgeon)
~Dr. Mike Lemey (CI Audiologist)
~Ms. Barb (AVT Speech Therapist)
~Ms. Renee (EI Speech Therapist)
~Dr. Anne Davis (HA Audiologist)
~Ms. Karen (Early Intervention (EI) service coordinator)
~Laika A. (CHKD Social Worker)
~Barefoot Kids School (ALL of the fabulous teachers (Ms. Keia, Ms. Doneka, Ms. Leanne, Ms. Laura, Ms. Jenna, Ms. Molly, to name a few, and director (Ms. Jenifer)
~Poppy, MeMe, PaPa
~Dr. Moody-Antonio (CI Surgeon)
~Dr. Mike Lemey (CI Audiologist)
~Ms. Barb (AVT Speech Therapist)
~Ms. Renee (EI Speech Therapist)
~Dr. Anne Davis (HA Audiologist)
~Ms. Karen (Early Intervention (EI) service coordinator)
~Laika A. (CHKD Social Worker)
~Barefoot Kids School (ALL of the fabulous teachers (Ms. Keia, Ms. Doneka, Ms. Leanne, Ms. Laura, Ms. Jenna, Ms. Molly, to name a few, and director (Ms. Jenifer)
Tuesday, June 19, 2012
Sean's "Hearing" Timeline
- COMING: July 9 2012: CI activation (27 m. old)
- June 21, 2012: Bi-lateral CI Surgery(26 m. old)
- March 2012: Very noticeable drop in Sean's "hearing"
- School Year 2011-2012: Auditory Verbal (AVT) Speech Therapy 1x/week and EI Speech Therapy 2x's/week
- September 2011: HA's fitted (17 m. old)
- August 2011: Diagnosed moderate-severe hearing loss. And diagnosed with LVAS/EVA (Enlarged Vestibular Acqueduct Syndrome, hearing is progressive and fluctuates. It also causes vestibular issues, tinnitus, among other things.
- August 2011: ABR with sedation to diagnosis degree of hearing loss & CT Scan request to check out possible vestibular damage
- July 2011: Several hearing tests failed *bump up sign language
- July 2011: 15 month old well-check with Pediatrician
- July 2011: Confirmation of hearing suspicion when Sean didn't react to fireworks (14 m. old)
- June 2011: Begin Early Intervention process (Speech 2 x's a week)/Suspicion of hearing loss
- April 2011: Suspicion of speech/language delay (referred to Early Intervention) *have already been using "baby signs."
- April 6, 2010: Born (tachypnea and pneumonia; 1 week in NICU)- Passed Newborn Screening
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