Merry Christmas

We hope you all have a blessed Christmas. On the eve of Christmas, here is a Not-so-Christ-centered Christmas carol. This would be Molly's monotone version of Jingle Bells. We have struggled to get inflection in her speech and in singing.

Stephen has been activated and is hearing----Praise God!!! I will write more later on this. What a Special Christmas this is for our family!

Surgery Report

Goodness, it is easier to upload photos and videos than it is to take the time to write. I have not forgotten about giving you a surgery/post-op report.

We give praise to our God for His goodness to our family in these last couple weeks. Mike had a few vacation days before he started his new job. Surgery was scheduled during his couple weeks of vacation, thankfully. Molly stayed with her grandparents so we could have some alone time with Stephen. We went down to UVA on Wednesday for a pre-op appointment and stayed the night in a hotel not far from the hospital. They asked us to arrive at 6am on Thursday because Stephen was first case. Our little fella was totally unaware of how his life would be completely changed in a matter of hours. Mike and I sat in the family waiting lounge for 3 ½ hours, thinking the same anxious thoughts that we did when Molly was under the knife. Only this time we had a few more concerns about Stephen’s anatomy. His surgeon mentioned in pre-op visit that Stephen had a small/short cochlea (seen on the CT). The surgeon did not express concern, but we were a little worried that they would not be able to get a good connection to the hearing nerve. This again was all in the Lord’s control. After the surgery, the surgeon came to the lounge to speak with us. He said that all went beautifully and when they tested the hearing nerve after the device was put in, they were able to get an excellent response. As you can imagine, we were elated to hear this. This gives us great hope that the device will work when Stephen is turned-on on December 19th. ( The audiologist waits a month for the wound to heal before she activates/attaches the external device.) So we went to the post-op area to find our wounded soldier in the arms of a nurse drinking pedialyte. He was not pleased to have the dressing wrapped around his head. Thankfully he wasn’t groggy like Molly was at this stage. They gave Molly morphine and it knocked her out for the rest of the day. They managed Stephen’s pain with infant Tylenol and that was all he needed for the next couple of days. After an hour of monitoring Stephen we were free to go, on the condition that we stay fairly close in case Stephen had complications. Yup, outpatient surgery! Amazing!


I must mention how thankful we were that Stephen was finally well for surgery day and he has continued to stay well. He bounced back pretty quickly when we brought him home. We are now 2 ½ weeks in recovery and Stephen’s stitches have absorbed and the bruising/swelling is gone. Now all I have to be concerned about is Stephen falling on the implant side as he learns to walk (it has already happened). Always an adventure!

Thanks for your many prayers and concern for our family during this time. You are an encouragement!

Say Cheeseburger

Photos of Post-op/recovery

Here is our wounded warrior right after surgery drinking pedialyte.














Stephen showing his disgust for the dressing, as daddy cuts it off.














Vaseline slathered over the beautiful stitches to keep it moist














Nothing holding Stephen back from learning to walk

Two days to go

For those of you who have remembered us in your prayers for this big week, we thank you. Lord willing, Stephen will have his surgery on Thursday morning. We don't know the time until the evening before. We will be heading down tomorrow for a pre-op appointment and stay the night in the area.

Stephen has mostly recovered from his sinusitis. He does have a little runny nose today. Hopefully that won't be a problem come Thursday morning.

Genetic Testing

Many of you have been curious to know the cause of our children’s deafness. We initially, with Molly, decided not to do genetic testing. Once Stephen was diagnosed with deafness we knew that it was without a doubt genetic. It was Molly’s speech therapist that recently suggested doing testing after expressing her concern for Molly’s oral motor and speech difficulties. We thought more about it and realized that, before the move, it would make sense to see a Geneticist thru UVA’s health system.

Last Tuesday, we met with the Geneticist and Genetics Counselor to discuss our options with how we should proceed with testing. The first option was to do a simple inexpensive blood screen that would detect the two most common genetic causes for non-syndromic deafness (connexin26 and connexin 30). We decided to go with this option as a start before we drained the finances with the complex testing. They only drew a small amount of blood from our brave Molly. She was happy to be rewarded with a band-aid. Oh, the simple things in life!!! :)

Three days later, the Genetics Counselor called with the results. Connexin 26 was detected (ending our testing process). We are grateful that the results showed that it is not syndromic and that there are no other associated medical findings present with it (guessing her naughty behavior doesn't count). This gene is inherited in an autosomal recessive manner —meaning both Mike and I are carriers. This still means that our chances of having a deaf child is 25% (even if we have 2 that are deaf–the chances don’t change). Also we have a 50% chance of having a hearing child who is a carrier and a 25% chance of having a hearing child who is not a carrier. Fascinating stuff! With or without the odds, we serve a sovereign God who has ordained this to happen for His purposes.

Changes

"I like my new house, I like my new church, I like my new Target"
This is what Miss Molly has been saying over and over for the past two weeks since the move. Thankfully Molly is adjusting well to these many changes. She is also thrilled to live within an hour from both sets of grandparents and her 6 cousins.

Unfortunately, this move takes us further away from UVA health system and the kid's Audiologist, Speech Therapist and ENT. We will continue to use their services for now, though the drive is about three hours. Our hope is to find a speech therapist in this area so that we can continue with weekly sessions.

We are two weeks away from Stephen's scheduled surgery. He has been sick with congestion and a junky cough for about two weeks. Our prayer is that he will be well enough to proceed with surgery on the 20th. I do remember having these same concerns with Molly a few weeks before. God has this in his control!

Disney Halloween

Molly chose to go as Sleeping Beauty and Stephen is dressed as Squirt the sea turtle (recycled costume from Molly).

BIRTHDAY GIRL

Happy 3rd Birthday, Molly! She sure was surprised when she realized that the birthday party was for HER. Oh boy, a whole year went by---what happened!

As you can see below, our resident artist has been honing her "happy-face" drawing skills. Hope this makes you smile!

Click on the comic to enlarge. My dad put this comic together using some classic Molly faces.

Amazing that I have a few moments to give you an update. Molly has been with her grandparents over the last couple days. It has been nice to give Stephen some special attention.

From my last update, I mentioned that Stephen was responding to more than we ever expected. We wondered if Stephen could ever get by with just hearing aids. As time has gone on, we have seen little evidence that this could ever happen. Stephen stopped his baby babble at 6 months—meaning he is not getting enough in for speech. He does use his vocal cords though, when his pacifier is not in. He has continued to respond, inconsistently, to some sounds of a high pitch. All of that said, we are still moving ahead with implant surgery and have it scheduled for late November, on Stephen’s birthday. Perfect gift!

I took Stephen to the hospital in Charlottesville on Thursday morning for a scheduled CT scan and ABR. While under general anesthesia, the ENT checked Stephen’s ears and found fluid behind his ears. They decided to put tubes in for preventative measures before surgery.

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Miss Molly’s progress:
- Molly is saying some 5 to 6 word sentences now. For example "See me riding on horse’s back" (as she gets on Mike’s back). She is using "me, I, I’m, mine, you" now too.

- Molly has memorized some of her well known books and she fills in the blanks when we stop reading. She will usually recite the next few sentences on the page (not exactly word for word, but close).

- Molly will tell us about the sequence of her day. For example when she wakes up she will come find me and tell me "Molly wake up, opened eyes, opened door, see Molly, see Daddy". She will do this with everything now.- Uses the words "today, tomorrow". Not sure if she completely understands them yet.

- More confidence in language has come from a game that Molly and her daddy play before bedtime. Molly will say "Pretend you are a ________" (a particular animal) to Mike and he will act out the animal. This has forced her to think and speak on her own. This has also given her an interest in learning a ton of new animals,bugs, etc. We have been reading her animal encyclopedia lately. Recently she has been asking Mike to "Pretend you are a______"

(particular profession). So Mike has been acting out for example what a doctor, nurse, teacher, preacher, cashier, farmer, etc. would do. This has helped with her creative role play during the day. She loves to pretend that she is a waitress taking our order or a cashier scanning our grocery items.

Molly's confidence level is growing----enough to sing little into the karaoke microphone.

Interestingly enough, Stephen is giving us some indication that he is hearing with and without his hearing aids. He turns to localize higher pitch sounds---like a rattle, tapping of fingernails, crinkle of paper, etc.. I have been able to see some reaction to speech as well. All of this makes some sense because he does have some haircell function. The big question is if he is hearing enough to produce sound for speech/language. This is something that his Audiologist and Speech Therapist have to determine in the next couple months. We are still moving ahead with implanting him at 10months, unless we see something that will make us wait.

We came home from vacation to find that our poppies were in full bloom. Molly picked a few of them, held them tight at her chest and said "bride". She is such a little girl.

Here are a few shots from our vacation in Hilton Head last week.

Happy Spring!!!

I have been meaning to post all the fun new things that we are hearing from Molly. She is now forming 3 to 4 word sentences with her limited vocabulary. She is singing quite a few songs---still a bit monotone. And now she is reciting all the Bible verses that she has heard over and over for a year. I will have to get some of this on video for you in the near future.

Trout Unlimited had Kids fishing day at the local creek yesterday. Daddy was so proud to take his little two year old out with the rod for the first time. She was quite scared of the worm on the hook and terrified of the fish that they (I mean Daddy) caught. We need to take more opportunities like this to toughen her up. :)

After Molly's nap yesterday, I left her alone with Stephen for a few moments and came back to find Stephen looking like this. His eyes tell it all. I was not too thrilled with her seeing as she came VERY CLOSE to his eyes with the pen. I'm afraid this won't be the last time he is her victim.

Here are a few goals we are working on in therapy:
~ understanding here vs. there (she is finally using them)
~ Molly is asking questions. She asks "what is that?" (sounds like "wa sat") and "where?". She will ask me "wa sat" when she wants to know a certain person’s name. We are working on "who is that?". :)
~ working on he/she. I think she is starting to understand this concept. Working on me/you. Not getting it yet.
~ understanding "what is he doing?".....she is using some "ing" words and I think understands this question.
~ understanding 1 vs 2. She can count, but she does not completely understand what the numbers mean.
~ understanding a possessive + noun (ex. Can you hand me daddy’s spoon?)
~ understanding behind, in front, on top, beside, under

Yeah--a video!!! Now you can finally hear Molly vocalize. This should give you a good idea of how well she is forming words. She can't quite say a few letters/sounds. This could possibly be developmental or because she is not hearing the sounds.

Hearing Aids on Stephen????
Yes, it wasn’t exactly the news we wanted to hear AGAIN. After Stephen was born we were quite anxious to have the nurses do the new born hearing screen. They were having some trouble with the OAE testing equipment that day, so they decided to test him the next morning. He actually passed the test and we all breathed a sigh of relief. We set up an appointment to have our audiologist do an ABR test on Stephen, whether he passed his OAE or not. We knew that he had a 25% chance of being deaf if what Molly has is genetically related. We never did do the blood test, but we were pretty sure it was genetic. So we were optimistic that he would pass his ABR, seeing as he passed his OAE (Molly failed her OAE). Unfortunately, our Audiologist was not able to get a response from the hearing nerve pathways. She said that he most likely has what is called Auditory Neuropathy. In my understanding, this diagnosis is given when there is hair cell activity present in the cochlea (which the OAE shows), but no neural components of the ABR are present. AN seems to be quite rare in congenital hearing loss. AN patients could have hearing loss ranging from moderate to severe. There is an outside chance that he could get by with just hearing aids. Our plan is to monitor Stephen with hearing aids for the next 7 months. If we see that he is not hearing enough for speech/language, we will move ahead with the Cochlear Implant when he is 10 mos old.
We take great comfort in knowing God’s purposes in all of this are right and good. Molly’s progress has given us much hope for Stephen’s future in the hearing world.

Long time no blog....... I have so much to tell. Where do I begin??? I will start with Molly and give you the news on Stephen later.

I would never have described Molly as "sweet" before baby Stephen came along, but she has proven to us that she does have a tender side. She really does adore him and wants to be mummy’s little helper, particularly with diaper changes and bath time. She looks for him when she wakes up in the morning and after nap. She is quite concerned when he cries (she calls it "cwyin"). She always wants him next to her when she is sitting. She pats the floor and says "sit down here baby" (how’s that for a four-word sentence). When Stephen was a couple days old, Molly noticed his umbilical cord and said a three-word sentence, "oooh dirty cut". Since Stephen’s birth, Molly has had somewhat of a speech/language explosion. Could be because the daily focus has been taken off of her — not the center of attention. She loves to say the full alphabet over and over in speech babble. She is identifying most colors and shapes by name. In the last two weeks she has decided to care more about numbers. She likes to combine them with the alphabet ("1-2-3-4-i-j-k"). Just a bunch of sounds to her at this point. A couple days ago, I noticed that Molly was counting Stephen’s fingers aloud. Pretty cool.