Christmas 06

Merry Christmas!! The girls enjoyed their second Christmas and their first "hearing" Christmas! They love signing "Away in a Manger" (they really just move their hands around!) and humming it with a little babble in there too! Among their new signs this week...Christmas, tree, monkey (unrelated I know, but still very cute!), and present.

We celebrated Christmas Eve with the Rogers' crew. Sophi likes Granny's elf hat...it had a bell of course! Rena preferred Uncle Mark's santa hat.

The girls have sweet little short legs and are still too short for chairs...so Granny and Papaw found some perfectly sized stools for them to learn to stand up from. They really think they are big girls now!!!

We have a complete band now with keyboards, bells, tamborines, and drums!! As you can tell from the photo at the left, Sophi hear's the bells just fine!!
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.

The girls enjoyed their apples with their great grandpa Charlie. Can you tell he adores them? He prays for them every day and says the only thing wrong with them is they're not blondes!

Sharing...

Rena goes in for the steal of Sophi's pacifier.

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!!

Ho Ho Ho

sophi & rena enjoy some time with santa

We were pretty bummed that we missed the Logdon Christmas party with all my (Vic's) aunts, uncles, cousins, and the infamous Santa who always shows up for the kids...and adults! I couldn't wait to have my own kids so they could experience a crazy huge Logdon get together! However, with the girls health, we had to bypass the party for one more year. I was on the phone wishing everyone at the party a Merry Christmas when sitting on the corner in a big golden chair was Santa himself. No kids around, just Santa kicked back enjoying the warm weather. I ran home and grabbed the girls for a photo opportunity...how great was that! Our first photo with Santa.

Sophi has learned the word for "nose" and was intrigued with Santa's nose. Last week I told her "no"when she was grabbing something and she looked at me and smiled and touched my nose....how am I ever going to say "no" to that!!! How sweet that she's learning to communicate through hands and voices!

The girls just completed the speech portion of their assesments. In July, they scored as 6 month olds at 12 months old. Last week, they scored as 16 month olds!! What a jump!! They are doing fantastic!

We go in at 6:30am this Friday to Kosair Children's Hospital for Sophi's surgery. We'll keep you updated!

MaMaMa...BaBaBa

Rena and Sophi pose for a Christmas photo.

The past few weeks have flown by!! The girls are babbling nonstop...so much so, sometimes I miss their new sounds in all of their jabbering! Both are saying, "MaMaMa" now, especially when they are upset about something, "BaBaBa" for their ball, bus and baby, and "eat" which of course is the most important word to learn first! They know and use about 30 signs consistently and are learning new signs every day. It's amazing how quickly they pick signs and words up! Their favorite new sign is "monkey" and they both make an "e, e, e" sound with their sign.

Unfortunately, Sophi is scheduled for surgery again on Friday, December 22. The micro tube they put in her implanted ear is clogged and her inner ear is filled with fluid. The doctor explained that there are risks of infection either way...by leaving the tube in and risking an inner ear infection of the fluid or by replacing it and the risk of infection with surgery. We are opting with the surgery in hopes that it will release some of the pressure she has and make her a little more comfortable.

Developmentally, they are growing by leaps and bounds. We are scheduled with First Steps for our review the first week of January. The girls have already been "tested" for their developmental development and they are finally catching up! Most of the effects of prematurity are evaporating! It's been a long and slow journey, but it has been so worth it to see them be able to do things that doctors told us they may not ever do because of their prematurity. Both girls are up and walking with their walkers...it won't be long before they are walking on their own! It appears that there are no signs of mild cerebral palsy or other issues with Sophi's brain bleed....praise the Lord!!! What miracles!!

We're still in a bit of lock down. RSV season hit Louisville early this year and they've even had to close a couple of day care centers down for a few days because it is so bad. RSV is a respiratory illness that most children get before they are two. It typically looks like a cold, however, for preemies whose lungs are still fragile, it can send them back to the hospital and on a ventilator. Because the girls have mild chronic lung disease, our insurance pays for Synagis shots that they get once a month from September to April. The $3,900 a piece shots, gasp....wow, I know...we understand how serious RSV would be to our kiddos if our insurance is willing to shell out nearly $8,000 a month for shots, does not prevent them from getting RSV, however, the shots should help keep the illness to a runny nose and not a severe case of respiratory stress. We're just trying to stay away from RSV altogether, that's the safest bet!!

Because of that, we may miss out on seeing a lot of you at holiday functions, parties, etc. Please don't take it personally. We're trying to protect the girls. Today they are having a Christmas party at the Louisville Deaf Oral School thanks to the Kiwanis Club. We aren't able to go, however, we'll be there next year. They say by two, the girls lungs should be strong enough to handle germs. So...we'll be dressed in red and ready to party at all of the Christmas functions next year!

Thanks for your continued prayers!!

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!!

November 2006 Gatlinburg

My sister has requested that we update the blog with new pictures so that the "Bacon Strips" i.e. scabs might be moved a little further down the line. My initial response is to say, "Just wait until we get their tonsils taken out." But since those are in good shape right now we'll have to wait on those photos for a while. At anyrate, here you go sis...

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.

Laurel Falls

Vic packs Soph with no trouble at all...

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.

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...

Tonight, October 27, 2006, the second of two scabs finally fell off completing now another round of extraordinary events with our daughters Rena and Sophia. Soph, who was first to see the world was the last to lose her cochlear surgery scab. Rena’s dropped yesterday, or rather snagged on the carpet as I changed her diaper and finally relinquished its grasp after weeks of adherence. They have healed for the most part. They are responding to more and more sounds daily. Over the last weekend I clapped as they were crawling away from me with their backs to me. They both stopped, turned, smiled, looked at me and clapped their hands in response. How cool is that!? It may not seem like such a big deal, but believe me; it’s huge! That small response shows that they can put the sound with its source. They have identified it. They’re getting it! And now on top of that their scabs have fallen off.

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

Stairway to Heaven

The girls continue to progress with their implants. We continue to work with their developmental delays from their prematurity with a physical therapist, a developmental interventionist along with their speech therapists. Our most exciting feat occurred last week when both girls took off up the stairs for the first time...not to worry, their adventure was therapist approved! Thanks, Emily!

They turn to sounds now and babble new sounds like you would expect a newborn to do. They are only 1 month and a half in hearing years, so they are right on track. They do become easily frustrated though with all of the new stimulation and Sophi has started biting again...watch out, Rena! She's already bitten through a plastic part of her earpiece...thank goodness for warranties! They have added the words "shoe", "baby", "star" and some form of "hallelujah" to their sign language skills.

We know there are many people checking this blog and praying for our family that we have never met before. Thank you so much for your prayers!

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!

"mama"

My heart absolutely hit the floor this morning...I'm still pinching myself...Sophi was crawling across the floor and she stopped and clearly said, "mama" and kept crawling. I'm not kidding! She didn't look at me, but it was the first time she has made consonant sounds. Both girls say "AAAAAA" a lot, but never a consonant sound. All weekend we've been saying "mamamama" and "dadadada" and "babababa", but we never dreamed she would pick up on it so early. In fact, they've told us not to expect much this early in the process.

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!

Wondertwins Activate!

Wondertwin powers activate!! The girls are officially bionic babies!

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!

Activation tomorrow

The girls will be activated tomorrow! They are doing fantastic with their recovery and we're all ready for the next step. It's important to note that while they will be able to "hear" for the first time, most children do not have an obvious reaction ot the new sounds. They are like newborn babies again and we will begin intensive therapy to help them learn to listen. All of their toys and everything they have known for the past year have never made any sound, so this will be a whole new world for them and will take time for their brains to comprehend everything. They will also turn them on at a very low level and over the next couple of months we'll gradually turn them up as they get used to sounds.

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!

The REVEAL!!!

It's been a quick five days and we can't believe how well the girls have done!! They're everywhere again. They're a little cautious with their heads but we stay pretty close to them just in case they decide to take a dive. We don't want to be bumping our incisions just yet...

Aunt Nan & the twins!

Recovering with Granny...

Rena is determined to stand.

Sophia wants the camera

Cute, even with a head injury...

Me too, buddy...me too.

Don't you just love the tangy sweetness of fresh wet wipes!

We're just playing...

The following pictures are of Sophia's big reveal.

Rena's are unavailable as she revealed herself by pulling off her own bandage just moments before her daddy got in the door after work.

To the faint of heart, the incision photos might be a little hard to take depending on your disposition.

Baby Einstien after all is pretty cute. Baby Frankenstien, however, is sometimes a little harder to, well, you'll see.

(Somewhere in Cyber Space my mother is using my middle name :))

So, we warned you, even in red letters.

Untying the knot

Soph's not sure if she likes this.

Will he incur the mummy's curse??

One...

Two.... Awe man, look at that sweet face!

Two and a Half...

THREE!!!

Wow, man. I mean look at that thing. That's amazing. And it doesn't even seem to bother her that much.

And Last but not least....

FrankenRena.

Rena likes her nice new toy but as it is now officially a biohazard it must be discarded.

Sorry Sweetheart, those eyes don't change nothin' turbin's in the trash!