Monday, October 27, 2014

Cochlear Implant Surgery

After our failed attempt at cochlear implant surgery in August, we consulted a new surgeon at a different children's hospital. It felt right to get a fresh start after so many glitches occurred at our first one. Our new surgeon has completed 1200 cochlear implant surgeries and the office staff was helpful and experienced.

After our hospitalization earlier in the month, I feared our October 20th surgery would be postponed, but we received all clearances in time to move forward. Afua was healthy, her strength was returning and we felt an overwhelming peace about the decision.
enjoying some pre-surgery snuggles

On October 20th, we woke up early and made our way to the hospital. While I didn't want her to have a yet another surgery, this held much promise. 
happily waiting

Everything went smoothly and her implant was tested under anesthesia. It worked well which was a relief. We received our suitcase of technology and a brief explanation by the hospital audiologist.

Before long, Afua woke up and we went home. She was very nauseous the first day but the second day she was comfortable. We stayed home from school the rest of the week and she will return to school on Monday.

a get well bear got her smiling
snuggles
we named him "the most expensive stuffed animal that includes a cochlear implant as a bonus gift"

Our activation will be November 21st and I am not sure what her reaction will be. Afua has had profound hearing loss in her left ear and severe hearing loss in her right ear since birth. She can hear some sounds from her right ear but she has never heard speaking (at least not clearly). This may be frightening or this may be exciting to her. Knowing Afua, she will display her usual determination to figure it out.

 Will she be able to speak in the future? We don't know, but we sure can dream. 

Thursday, October 23, 2014

Review of Ringling Bros. Barnum & Bailey: Legends

I received something of value from Feld Entertainment as part of their Insider Program. I was not required to write a positive review. The opinions I have expressed are my own.

Joy's favorite moment





The Ringling Bros Barnum & Bailey: Legends did not disappoint! Action packed show had something for all my kids to ooh and aah over. Joy loved meeting the performers during the free pre show activities. 

She also has not stopped talking about the horse with wings. 


graceful elephants

We saw an elephant up close during the pre show and we loved watching them during the performance also. 

Torres Family

The Torres Family with their motorcycles was my boys favorite. They kept adding riders inside the sphere shaped cage and it was timed precisely to avoid collision.


Our Ringmaster, Jonathan Iverson made the show so special. His voice set the tone for an exciting evening and his singing was spectacular.


I loved the horses and the riders performing daring jumps on and off them.

And the daring flying trapeze...it just isn't a circus without it.


The finale included all the acts presented in the show and I could see that my children had a wonderful time by the looks on their faces. The circus was great fun for the entire family!!!

 Click here to purchase tickets for a Ringling Bros. and Barnum & Bailey performance in your area!

There are still plenty of performances left!
The best part is you can receive a discount off  tickets if you use the code  QUEST4:

  • $8 off VIP ($40 regular price on Wed/Thurs, $43 regular price on Friday-Sunday)
  • $8 off P3 ($23 regular price on Friday-Sunday)

How to watch Downton Abbey season 5 FREE




Are you a fan of Downton Abbey?



After watching the first two seasons in a row on Amazon prime, I was hooked. So what's a girl to do when BBC is showing the new episodes in UK and people in the US have to wait until January? 

Let me introduce you to my new best friend SIMPLY JUNE and how we can all enjoy Downton Abbey Sunday nights with our British friends. Enjoy!

What an October


This month has been different than I ever imagined. Instead of pumpkins and apple orchards, it's been hospitals and surgeries. But that's the way life goes sometimes, especially when you parent a child with medical or special needs.

A few weeks ago, Afua began to have staring spells and we suspected focal seizures. Teachers and therapists all saw them and we made an appointment with our neurologist. they couldn't get us in for 10 days so we waited and documented the seizures.

cutie pie always ready for road trips

Before we could get to that appointment, we had to be rushed to the ER and admitted to the hospital. She was having a hard time, we just didn't know with what....

EEG leads were in and we waited for results
Within an hour, the EEG picked up seizure activity and medication was started.


At the hospital we discovered that Afua had been bleeding in her stomach for weeks and this imbalance was bringing forth the seizures. We were in good hands and a quick procedure was performed under anesthesia. 

most of the days her eyes were closed, this morning i was able to see her eyes

Once we were home, I was sure our cochlear implant surgery would be canceled, but our surgeon was comfortable with us going ahead. Flu season was approaching and the surgery needed to happen before then. We had two weeks of blissful happiness at home before the surgery.

within a day at home, she was happy again

snuggles with daddy

Today, we are home after a successful cochlear implant surgery and Afua is recovering well. In the coming days, I will tell you all about it.

Parenting a child with special needs is unpredictable. I am grateful for the timing of all of this though, we absolutely needed to know about Afua's bleeding before we had the cochlearn implant surgery. Now that it's diagnosed and under control, she is more comfortable and happier than she had been in weeks, even months. 

Wednesday, October 22, 2014

The Greatest Show on Earth!


I received something of value from Feld Entertainment as part of their Insider Program. I was not required to write a positive review. The opinions I have expressed are my own



My father is a musician and growing up in a small European country provided many interesting memories. Like my father's musician friend who toured as a clown in a circus. When the circus came to our town we would get behind the scenes tours and great seats. I loved the skilled acrobats, beautiful animals and the treats (of course). I still carry those fond memories of a circus from my childhood and I always think of my childhood when I take my children to a Ringling Bros. and Barnum & Bailey show.

Behold the living legends! Ringling Bros. and Barnum & Bailey® brings the unbelievable to Children Of All Ages in an all-new show - - Ringling Bros and Barnum & Bailey Presents LEGENDS. Experience unimaginable family fun, as amazing performers from around the globe perform awe-inspiring feats of daring, spectacles of strength and thrills of wonder to summon the mythical and mysterious creatures of the past: a Unicorn, a Pegasus and a Woolly Mammoth! Join us for an unforgettable family night of legendary proportions! Ringling Bros and Barnum & Bailey Presents LEGENDS!
We are especially excited about seeing  Johnathan Lee Iverson, the first African American Ringmaster. 


The Greatest Show on Earth is coming to Cleveland October 22-26
The best part is you can receive a discount off their tickets if you use the code  QUEST4:
  • $8 off VIP ($40 regular price on Wed/Thurs, $43 regular price on Friday-Sunday)
  • $8 off P3 ($23 regular price on Friday-Sunday)
Purchase tickets here 


During Ringling Bros. And Barnum & Bailey: Legends you’ll be able to watch some amazing performers from around the globe perform awe-inspiring feats.  This show unites iconic circus stars with living mythological creatures in a celebration of the LEGENDS that have captured imaginations for centuries. Ringmaster Johnathan Lee Iverson guides Paulo the Legend Seeker on his quest to discover real, living legends from around the world and presents Paulo’s fantastic discoveries to circus fans everywhere. Mythology meets reality as Paulo encounters the wondrous Pegasus and the amazing Unicorn, as well as circus legends such as big cat presenter Alexander Lacey; the Riders of the Wind Cossack horsemen; and motorcycle daredevils, the Torres Family. - See more at: http://couponingwithrachel.com/2014/10/01/ringling-bros-and-barnum-bailey-legends-is-coming-to-cleveland-giveaway/#sthash.ZoJUEdLM.dpuf


Watch the video to get a taste of the show


Also, learn more about a special program if you are taking your baby to the circus for the first time. 

Baby's First Circus
During Ringling Bros. And Barnum & Bailey: Legends you’ll be able to watch some amazing performers from around the globe perform awe-inspiring feats.  This show unites iconic circus stars with living mythological creatures in a celebration of the LEGENDS that have captured imaginations for centuries. Ringmaster Johnathan Lee Iverson guides Paulo the Legend Seeker on his quest to discover real, living legends from around the world and presents Paulo’s fantastic discoveries to circus fans everywhere. Mythology meets reality as Paulo encounters the wondrous Pegasus and the amazing Unicorn, as well as circus legends such as big cat presenter Alexander Lacey; the Riders of the Wind Cossack horsemen; and motorcycle daredevils, the Torres Family.
Performance Dates:
Wednesday – Oct. 22 7:00 pm
Thursday – Oct. 23 7:00 pm
Friday – Oct. 24 7:00 pm
Saturday – Oct. 25 11:00 am, 3:00 pm, 7:00 pm.
Sunday – Oct. 26 11:00 am, 3:00 pm, 7:00 pm.
Coupon Code:
Use code: QUEST7 and get:
$8 off VIP ($40 regular price on Wed/Thurs, $43 regular price on Friday-Sunday)
$8 off P3 ($23 regular price on Friday-Sunday)
Order Tickets to Ringling Bros. and Barnum & Bailey circus
1. Online: Order tickets online
2. By Phone: Call 1-888-894-9424
3. Visit the Box Office
- See more at: http://couponingwithrachel.com/2014/10/01/ringling-bros-and-barnum-bailey-legends-is-coming-to-cleveland-giveaway/#sthash.ZoJUEdLM.dpuf
During Ringling Bros. And Barnum & Bailey: Legends you’ll be able to watch some amazing performers from around the globe perform awe-inspiring feats.  This show unites iconic circus stars with living mythological creatures in a celebration of the LEGENDS that have captured imaginations for centuries. Ringmaster Johnathan Lee Iverson guides Paulo the Legend Seeker on his quest to discover real, living legends from around the world and presents Paulo’s fantastic discoveries to circus fans everywhere. Mythology meets reality as Paulo encounters the wondrous Pegasus and the amazing Unicorn, as well as circus legends such as big cat presenter Alexander Lacey; the Riders of the Wind Cossack horsemen; and motorcycle daredevils, the Torres Family.
Performance Dates:
Wednesday – Oct. 22 7:00 pm
Thursday – Oct. 23 7:00 pm
Friday – Oct. 24 7:00 pm
Saturday – Oct. 25 11:00 am, 3:00 pm, 7:00 pm.
Sunday – Oct. 26 11:00 am, 3:00 pm, 7:00 pm.
Coupon Code:
Use code: QUEST7 and get:
$8 off VIP ($40 regular price on Wed/Thurs, $43 regular price on Friday-Sunday)
$8 off P3 ($23 regular price on Friday-Sunday)
Order Tickets to Ringling Bros. and Barnum & Bailey circus
1. Online: Order tickets online
2. By Phone: Call 1-888-894-9424
3. Visit the Box Office
- See more at: http://couponingwithrachel.com/2014/10/01/ringling-bros-and-barnum-bailey-legends-is-coming-to-cleveland-giveaway/#sthash.ZoJUEdLM.dpuf

Wednesday, October 1, 2014

World CP Day



Today, we are wearing green to spread awareness of cerebral palsy. It's a bittersweet feeling to recognize this day (we don't "celebrate" it) and acknowledge that the reason we have Afua in our family is because she has CP. I am aware that the reason I am her Momma is because another Momma on the other side of the ocean wasn't able to. She was born into a country that couldn't give her a future.She was born into a culture that believes children with disabilities are cursed.

So today, as Afua got dressed in green, donned her braces and body suit and sat in her wheelchair waiting for her school bus, I am thinking about a woman who very well may be wondering where her daughter is. I would do anything to be able to tell her that her precious daughter is receiving medical care, education, nutrition and love. And we will work hard to spread awareness and pray for a cure. 


Wednesday, September 24, 2014

The sibling of a child who has special needs

We adopted Afua 14 months ago and she is our first child with a visible disability. I often think how our life has changed in the last year, the good and the challenging. Medical equipment, considering wheelchair accessibility of various places, appointments and surgeries have all become a frequent part of our every day life. Our four older kids have gone through the changes along with us and I have worried if they would resent their little sister or our decision to adopt her.

Jake is my compassionate kid and it was no surprise that he became a caring big brother to Afua. Her smile is all he needs to be happy.They have developed a special bond.


Sometimes people assume he is the child most affected by our adoptions. After all, he was the baby of the family and now he finds himself as the second oldest out of 5. Sure, I can't be a room mom at school or come to every class party. I may be at therapy appointments or hospital more than he likes. There are sacrifices that all of us have made to make room for more children in our family. It happens in biological families too as a new baby arrives. But the changes in Jake over the last year have been so evident and I think he is growing into a wonderful young man.

Afua's bus comes first each morning and he comes outside to spend time with her. They play basketball together (she passes the ball and he scores but he always high fives her for a great assist). Last year, when they were in the same school building, he would stop and give her a hug and kiss several times a day. He doesn't have to do any of this, but this is how he wants to spend his time.

I grew up with a younger brother who was hospitalized for weeks at a time. I know how that breaks the familiar family routine, causes parents to be preoccupied and everyone to be worried. I also know the other side, the side that shaped me to choose a helping profession, to care about the people who have a disability, who are different and who are the outcast. I learned to be patient with people who take longer to communicate and I knew the value of friendships with everyone. Jake has learned that at the age of 9. Many adults have not.

After his first day of school this year, Jake excitedly told me that his classroom is across the hall from the "children who are like my sister" (his words). He spent his recess with two students who use wheelchairs and told them he has a sister who uses a wheelchair too. No hesitation, just pure acceptance.  While he has always been a compassionate child, he now knew how to interact with a non-verbal peer and undoubtedly he is teaching his classmates about that too.

Having a child who has a disability can be seen as a tragedy and a burden.  Those unfamiliar with our life can feel sorry for Jake (or our other children). They may feel sorry for Afua because of all that she's been through. But in their pity, they fail to see the beautiful and there is so much beautiful. There is nothing more tender than a little boy's sweet good morning song to his sister. Or the way her face lights up as she sees him returning from school. And while there is so much hard and sad and worry there is the other side too. A little boy who is learning about life right in our home. And his sister, who the world thinks can't contribute much, is the ultimate teacher to all of us.