Friday, January 26, 2007
Curly locks...
Play Date...and just playing!

Sophi says, "Happy New Year!!!"
Ditto! from Rena
Happy New Year!!
He's cutting teeth too!!! Rena enjoys a close-up look of Jaws at Newport Aquarium.
Saturday, January 20, 2007
Rena Walks!!
http://www.youtube.com/watch?v=zQ-b5zJcVHA
One foot in front of the other...
Our focus has certainly been to just keep putting one foot in front of the other this past year as we've watched the girls endure many challenges and slowly meet their milestones...our girls' seem to have picked that trend up as well. Sophi put one foot in front of the other and took her first steps on Thursday and Rena followed on Friday!!!
Sunday, January 07, 2007
Uh Oh!
So…
About four weeks ago the girls started saying “Eee! Eee! Eee” at breakfast, lunch, snack, and dinner. They are missing only the “t”. “Mama” was there first word. “Eat” is officially the second. It was funny. Several days ago in the evening Vicki and I had fed the girls about an hour and a half before we decided to eat something ourselves. I asked Vicki, who was playing with the girls, what she wanted to eat. The girls had their backs to me and as soon as the question left my mouth they both turned, faced me, and started saying, “Eee, eee, eee,” signing and crawling. I said playfully, “Who taught these kids how to hear? You two are always eating! Let us eat.” So, for the first time, having daughters that circle our plates like vultures anytime we try to eat, we have to spell it out to each other if we’re going to get into something we don’t want to share. “Hey Vic, do you want to “E-A-T?”
They also make a “ma” sound for “more.” We know this because they often accompany the sounds with the sign it signifies. And when they sign “please,” more often than not it is accompanied by “eeaze.” They’re working on “eyes,” “nose,” and “ear.” They come out “Iy,” “Noo…,” and “eugh” (yeah, use you’re imagination on that one.) Vicki got after Soph the other day and said, “Sophi, No!” To which Soph responded by turning to her, smiling and putting her index finger on the end of her nose. That probably means she’s not hearing the S’s on the end but that’s ok for now.
They also make a kind of chirpy noise, especially when they’re scolding us for taking something away or telling them no. They sometimes sound like Dino from the Flintstones and at other times like Beeker from the Muppets. Its pretty cute.
This weekend we traveled to Nashville to visit Crosspoint, a church that supports our work in the Dominican and Haiti. We had the opportunity to stay with our friends Page and Christina (we met them when they came down on a short-term trip to the Dominican last July). Page has some dogs that were barking at the girls from outside of a glass door. The girls stood in their faces on the opposite side and barked right back for the first time ever, “ar, ar, ar!” They were outrageously excited by the dogs. Sophi, in particular, was fearless.
Later that night one of us dropped something and said, “uh oh.” Rena, for the first time and clearly as can be, looked up and said “Uh oh.” She did it again and again for us but I’m sure that when the time comes to show her off to our therapists she’ll clam up just for fun. (I had to come back and add this part: as I was writing this Soph started saying “Uh oh” just as clearly as Rena!!) How cool is that! Thanks Page for the awesome hospitality and all of your love for the girls!
And thanks to all of you who check this so frequently out of the same love for our girls. We appreciate it more than you will ever know.
Grace and Peace, all
Connexin 26 is not the title of an old Alias Episode...
So, above is our Punnett Square. Remember those from science class in highschool. Remember thinking, “When am I ever going to use this stuff?” Well it just goes to show that you never know what might prove to be useful in your life. Anyway, as I said, Vic and I are carriers which means that our hearing genes are Rr (R=Typical Hearing, r=hearing loss and/or deafness). So combine the two above and we’re left with the 25% chance to have a child with typical hearing who is not a carrier of Connexin 26, a 50% chance of having a child with typical hearing who is a carrier of Connexin 26, and a 25% chance of having a child with significant hearing loss/deafness.
So, there you go. And so what’s the bottom line you ask? Well, quite frankly, we’re a family of X-Men! So all you regular o’le humans, don’t be haters!!
For more info check out the new link to the left “What is Connexin 26?”
Wednesday, December 27, 2006
Christmas 06
With all of the toys, wrapping paper, lights, etc....the winners for the day were the apples the girls received in their stockings at Grandmother's house.
Saturday, December 23, 2006
Sharing...
Thank you for your prayers...Sophi's surgery went well. Our experience was much different at the hospital this time. We were in and out within a couple of hours and Sophi was back to her normal sassy self quickly. She is now the owner of a larger tube that will hopefully reduce the chances for ear infections and help her with her balance. Please continue to pray for healing of her implanted ear. Merry Christmas!!
Sunday, December 17, 2006
Ho Ho Ho
Wednesday, December 13, 2006
MaMaMa...BaBaBa

Monday, November 13, 2006
Sshhh...

Sshh!! Ssshh is important. No, no, don’t be quiet. Just listen. Listen to a child that could not hear say, “Sshh…” But rather, when Rena says it its more like “thhshhshhshhshh.” She’s trying and she is almost there.
Vicki and I noticed her mimicking us over the weekend. When we play with her with her little baby we pretend to put the doll to sleep and we say, “Sshhh, she’s sleeping” and we hold our fingers over our lips as we shush everyone. Rena and Sophi do the same the difference being that Rena comes very close to making the sound. I was with the girls for their speech therapy today and had Rena showing off. Our therapist is thrilled with how quickly she is coming along. Add to this that we asked Rena today vocally to find her baby doll, no signs, no hints, just the sound of the words and she went for it! She heard it; she recognized it; she responded to it. How Awesome!
And no, don’t worry about Sophia. She’s coming right along too. Remember, her program is set a little lower than Rena’s in terms of intensity so she’s not getting quite as much. Regardless, we are sure now that Soph is turning to her name when we call her. The other little thing is something that Vicki and I discovered while we were giving them both a bath tonight. Sophi and Rena both love birds and especially ducks (ducks in books, ducks on T.V., pictures of ducks, ducks in the bathtub). We play auditory games with the ducks too. “Sophi, the duck goes quack, quack, quack, etc.” In the bathtub tonight Sophi let out a series of loud guttural sounds. She kept doing it over and over again and I started to laugh. I told Vicki that she sounded like a barking seal. We couldn’t figure it out. I was on my way to get her a bucket of fish when Vicki put it together, “Jeff, I think she’s quacking…” She was absolutely right. Every time Soph would pick up the ducky she’d bop it around to the rhythm of her seal barks. Now, granted she doesn’t have the sound quite right but she has put it together that the duck makes a sound and does so in a particular pattern. In other words, she’s been listening.
So there you have it, Rena’s first “Shush” and Sophi’s first “Quack!” What a hoot!!
Thursday, November 09, 2006
November 2006 Gatlinburg
This time last year Sophia was still on oxygen and weighed around 6 pounds. So we missed last year but this time we were able to participate in the Rogers' family annual Gatlinburg weekend. We were able to hit a trail thanks to our handy baby hiking backpacks. We did a short 3 mile round trip hike to see Laurel Falls.



Rena digs her first quality piggy-back ride...
Soph can't take any more of the fresh air. She's out.
And so is Rena who's sleeping standing up!
Girls playing in leaves. Great lures for drawing in Smokey Mountain Bears...
And it works!!
Oh, but really they are safely in the mini-van while dad is foolishly outside taking pictures. I was using a telephoto lense so I was not nearly as close as it might seem. Pretty cool, huh? First time we've ever seen a bear in the wild. We saw him from the road after we got back from our hike.
Friday, October 27, 2006
Twins Again??
Can you guess what these are??
If you guessed bacon then you're mistaken...
But if you guessed scabs..
You'd be right on.
We should note that our friends the Beasleys were the first to post a photo of their daughter's scab from the same surgery a few weeks ago so what's represented here is not original.
However, they are twin scabs which must count for something.
Scabs...
So tonight I’ve stayed up too late for a Dad whose girls will be up bright and early Saturday morning and I’m stuck thinking about scabs. Vicki and I up until last year for the past five years have been working in the Dominican Republic and Haiti. Our plan as we were pregnant in the Dominican for the first six months of our pregnancy was to return to the states, give birth, and return to the DR with our girls. At the very least, our immediate plans were adjusted.
The girls came frightfully early… two and a half months, in fact. They spent 8 weeks in the NICU. We almost lost them on the second day, a detail that somehow escaped us even though the nursing staff (some of which are dear friends) and others directly involved assure us today that we were told they would likely not make it (Vicki was still coming down off her meds; I, however, had no excuse). What we would find out later is that our home church in Santiago in Hoya de Ciamito was on that treacherous day lifting our entire family up during a 24 hour prayer vigil dedicated specifically to the girls’ survival and well being.
The girls seemed to be faced with one frightening possibility after another, Sophi in particular. Sophi had three cists on her brain (possible evidence of an in-utero brain bleed) that might mean brain damage, developmental delays, etc. etc., she got an infection through her pick line and went septic requiring strong courses of anti-biotics, she required lasics on a few occasions to get fluid off her lungs. Both started out on the vent; between the two of them they had five blood transfusions; they had to be taught to suck, swallow, and breathe; they failed their hearing screenings and were referred to an audiologist. Before we left, Soph got an MRI to see if she had suffered any brain damage; it was fine. Finally, we came home and Soph came with oxygen and an apnea monitor.
We thought we were finally out of the woods, mostly. We were still planning on the prompt return to the DR. At our first pediatrician check-up the doc found a hole at the base of Sophi’s spine that the neonatologists had somehow missed as did we. There was some fear of spinabifida so we quickly got another ultrasound to see if the hole was connected to her spine. No, it wasn’t. One last hoop to jump through, we thought.
Tuesday, November 15th was a shattering day. Our visit to the audiologist confirmed what we had feared and hoped against. The girls were not just hard of hearing. They were profoundly deaf. It is interesting to me that given all that we had endured and all that the girls had survived that this reality proved so devastating and demoralizing. There was much worse that could have been that was not. There was much that other parents and children had suffered and do suffer that we were not faced with. Perhaps it was that there were so many near misses that we had expected that we and the girls would get out without a scratch. Whatever bullets we may have dodged, we caught this one and it hurt.
It hurt because it would mean more obstacles for the girls. It hurt because it meant more obstacles for raising them. It hurt because it meant our plans to move to the DR and Haiti with them were on hold. It hurt because in spite of what we were spared, the God we serve gave us a taste of what it was to suffer.
It has been difficult to wrestle with the long-term implications of prematurity. It has been equally if not more difficult to wrestle with the implications of deafness with or without the aid and benefit of Cochlear implants. We did not sign our girls up for this, the surgery, the therapy, the specialists, the batteries, the equipment, the maintenance. But we were all signed up none-the-less.
Stanley Hauerwas is one of my favorite theologians. When the girls were still in the NICU I picked up an anthology of his work put together by a medical doctor, a nuerologist, if I remember correctly. It’s entitled “Critical Reflections on Stanley Hauerwas’ Theology of Disability: Disabling Society, Enabling Theology.” I discovered it online and picked it up immediately because I thought it might help prepare my heart for the road ahead not knowing then what the future may hold (as if today I do?). In one chapter he states:
“Necessities force us out of our paths of least resistance, and, as a result, they make us more likely to form communities that know how to care for one another.”
Part of what Vicki and I have mourned early on was the death of the illusion of normalcy, normal kids, normal family, normal, normal. Whatever that is. Let me put it another way. We were heading down the path of least resistance and discovered that the road was blocked and the only way forward was not what we had expected or hoped for or even considered as a possibility. It was an unpleasant surprise and it cut us. It exposed buried expressions of our selfishness, our self-righteousness, our arrogance, our idols, and our immaturity. The path of least resistance makes this kind of baggage easy to tote. Tougher trails require less ballast. You’ve got to learn to let it go or be bogged down by it. That was the terrible and difficult surgery of heart and spirit we have really had to endure in this journey so far.
But we’ve been healing from it. Healing from the bullet we caught and from the uprooting of junk still hiding in our hearts. We have discovered and are still discovering a depth of love and compassion that we would not have otherwise experienced. We are learning to care for our girls and for others in ways that we would have been incapable of before. Our girls are our girls, precious gifts on loan from the Creator of all things who expects us to make good on his investment. We’ve learned that we’re far richer for traversing a path that is sometimes uphill, unpaved, uneven and winding. We’re getting to the place where we would not have had it any other way. Our scabs have fallen off too. I’d show you but I didn’t get a picture of them. I’m sure there’ll be more to come.
At any rate, thanks for traveling with us. Your concern, your love, your prayers... we feel it all and it is deeply appreciated. Thank you.
In all Things, Peace,
Jeff
Wednesday, October 18, 2006
Stairway to Heaven

And they're off! It's always a race to see who can make it to the top first...I'm not looking forward to the day when they start racing down the stairs!

We finally figured out a way to keep their magnets on...with hats! Sophi says it was never this cold in the Dominican!! Sorry, baby girl...we'll return soon enough!
Gracias hermanos y hermanas en la republica dominicana y haiti! Gracias por sus oraciones. Las ninas estan cresiendo cada dia y ahora pueden oir! Gloria a Dios! Quieremos regresar muy pronto! Dios les bendiga mucho! Paz en cristo!

The girls enjoy their daily piano lesson...hey, Beethoven was deaf and look what he accomplished!
Monday, October 09, 2006
"mama"
I am seriously doing cartwheels through the house! What a blessing. I talk about God "wowing" moments a lot...this was certainly His moment and I am absolutely "wowed"! Thank you!!

The girls enjoy some much needed time off from the processors for bath time!!
The girls used to bang on the keys of the piano a couple of times and then want down. Now, they like to hang around a little bit longer.
We've often joked that their incisions were an early halloween frankenstein costume. It was fitting to get a picture at the zoo this past weekend with their look alikes!
Sophi checks out new sounds outside. Notice her earpiece on her back...we're still trying to figure out how to keep it behind her ear...duct tape anyone?
Thanks, as always, for all of your prayers and support!!!
peace!
Friday, October 06, 2006
Wondertwins Activate!
Many people have asked how we feel. This is what I journaled last night going into today....
"Tommorow is activation day. I'm cautiously excited for the girls to hear my voice for the first time. I want to repeat all of the things they couldn't hear me whisper to their tiny fragile bodies covered in tubes and wires safe in a plastic box during those first couple of months of their lives where they fought for every breath. The songs I sang, the melodies of reassurance, the cadences of "i love yous" as I looked on unable to hold the angels I had waited so many years for. They don't yet know my voice, but they know my blue eyes, my smile, my smell, my presence, my love. They've taught me that love isn't found in words, it's power is in actions. I don't know what tomorrow holds. I do know that trusted in my care are two annointed, beautiful girls who communicate with their big brown eyes, their larger than life smiles, and their little one year old hands."
We started the day by discovering that Sophi's implanted ear has fluid in it...not what we wanted. We are continuing with the antibiotic drops but are praying that her tube gets unplugged and certainly uninfected!
They certainly look alike and do many things alike, but their responses couldn't be any more different!!

Rena is cute in hot pink...yes, we've picked different colors to help everyone tell them apart...you're welcome! :)
Dr. Windmill sets the levels for Rena. She is starting them out at low thresholds so they can become accustomed to the new sounds. We will go back every couple of weeks to increase their levels.

Rena enjoys the new sounds. Most of the time she just looked really inquisitive as she was trying to figure out what was going on.
Sophi is cool in purple...that's Sophi purple, Rena pink. I don't know how to tell you to remember it...maybe Rena's name is shorter and the word pink is shorter? I don't know, maybe you can make up a song about Sophi in purple and Rena in pink. We'll leave that up to you, Rob and Joel!
Dr. Windmill gets Sophi set up. The external magnet attaches to the magnet under the skin, then it leads to a processor and microphones that fit behind the girls' ears and then some wires lead down to a controller that looks like a small MP3 player that fits in a pouch and is worn on a harness.
Sophi wasn't too excited about her first sounds. She nearly jumped out of Jeff's lap.
Sophi finally wears herself out...Dr. Windmill says it's the first time a child has fallen asleep during their activation! Because she was so sensitive to the new sounds, her levels are set much lower than her sister's for now.
We're off to teach them to hear every bird chirp, bang every pan, and say, "i love you" till our mouths run dry!
Thursday, October 05, 2006
Activation tomorrow
We'll keep you posted!
Jeff with bandana heads. We tried to wear bandanas at first when we went out so we wouldn't scare people with weak stomach's...however, the girls love to pull them off and show off their incisions. It's a great opportunity to educate people about the deaf and cochlear implants!
The girls miss splashing around during their bathtime...however, Rena still enjoys her individual bath in the sink. We're still trying to keep their incisions dry until they heal completely...disolving stitches are great when they disolve on time!
This reminds me of our ultrasound photos. The girls love to be close to eachother and to mommy!