Emily turns the big 1-0!

Emily has entered the realm of being a double digit number.  No longer will she be a single digit.  For the rest of her life she now will have two numbers, unless she really lives a long time and is blessed to have triple digits!  Emily doesn't care for cake, so she loves to have donuts instead.  Now that Emily is 10, she gets to have her own military ID card!  Woohoo!  Not that we've ever needed to use the kids' cards because we don't live on or even near a base, but you got to have one!  So we should probably take care of that real soon.

Emily loves ferrets right now.  She wishes she could own a ferret.  She has done a lot of research on them, and unfortunately (fortunately for us) they are banned in our little town.  She is hoping daddy gets stationed somewhere where it is legal to own one.  As far as I know they are legal in San Antonio, but that doesn't mean you"re going to get one Emily!  Thankfully, she is content with a stuffed ferret.

Are You Prepared?

On January 26th, we had a snow storm pass through that left us with about 8 inches of snow.  The snow was extremely wet and heavy and caused power outages all over the city due to falling branches.  Here in our front yard, you can see one of our front trees had three branches come down.  A further out you can see the tree in the middle of the cul-de-sac had a branch come down.  And beyond that you can see another neighbors tree with branches down.  We even had a neighbor who had a couple of large branches fall on top of his house, but luckily they did no damage.  We lost power that night at about 9 p.m.  It did not come back on until Friday night for only two hours.  Then on Saturday evening we had power for about six hours.  Finally, on Sunday morning we had power restored for good.  It wasn't easy, but we made it through!  The first night wasn't so bad because for some reason, I knew the power was going to go out, so I cranked up the heater and just let it run.  I guess you know you are going to lose power when the lights start flickering and you see branches falling everywhere.  It would probably have been easier to deal with if you didn't have to do anything, you could just snuggle up in bed and read a book or have a good excuse to sleep.  But kids still need to eat and dishes still need to be washed.  Luckily we have a gas range and gas water heater so we could cook and have hot water.  Washing dishes by hand wasn't all that great, but it did keep you a little warmer!  We even fed the missionaries without power!  We made Navajo Tacos by candle and lantern light.  The hardest part was when the sun went down, and because it's winter, the sun goes down early.  It's too hard to do things by candle light or lantern light, except read.  So any chores that needed to get done needed to be done before the sun set.  I sound like a pioneer or something!  The kids spent a good part of each day playing outside in the snow.  It was no warmer inside than out.  We finally broke down and built a fire on Saturday morning.  We don't know when the chimney was inspected last, so we were a bit leary, but Todd shined the flashlight up the chimney, didn't notice anything clogging it up, and decided to go ahead and build a fire just this one time.  It was nice to have a fire going.  And thanks to many years of experience in building fires at Girls' Camp, I kept that succor roarin'!  It warmed up part of the room a little, you kept nice and warm right near the fire.  When the power came back on on Saturday, I started to do laundry.  I didn't know it was going to go off again later that night!  Thankfully all the Sunday clothes were washed.  Nothing go ironed, but they didn't look too bad.  And I think that Sunday was the only Sunday I have gone to church without washing my hair.  I took a shower but because we had no electricity I couldn't use a blow dryer so I didn't want my hair to get wet.  It didn't look too bad and we didn't really smell like smoke, right? hahahahaha  The frumpy, smoke smellin' family comes to church on Sunday!  It was definatley an experience.  I never even thought about breaking into the 72-hour kits.  Todd said he thought about it once, but since we had gas and could cook, saw no need of getting them out.  The things we learned were number one priority was heat or some way of keep warm.  Second priority was light.  Our third priority was food, but this wasn't a big deal at the time, but in another situation it could be.  We have also concluded that the basement is the warmest part of the house in the winter when the power goes out because it is insulated by the earth.  This is were we will sleep next time when and if the power goes out.  And most importantly, the children have learned that they can entertain themselves without the use of electronic devices, a very painful lesson I'm sure they'd say!

Update on Seth

So, I guess I should post something about Seth. It's been 14 weeks since Seth had his CI surgery. And it has been what, about 10 weeks since activation? So, when he was activated, it's like the beginning of hearing. So, his listening age is about 10 weeks. I am happy to report that Seth is doing better than expected in speech and listening. In fact, our auditory/verbal therapist says he is doing so well, that instead of seeing her twice a week we only need to see her once a week. Our therapist is really good and demanding, she wouldn't cut back his therapy unless she really thought he was doing well. Not only is this wonderful for Seth, it's wonderful for me too, I don't have to drive to Virginia twice a week anymore! Hooray! Stress level cut back a lot! Some things that Seth says are: Tartan (Karsten), Aya (Alex), Dane, Emanee (Emily), and Day (Kate). The K sound comes from the back of the throat which is harder to make than the sounds from the front of the mouth like "buh" and "mmmm". So Seth doesn't quite say the "ck" sound, but considering he's only a ten week old in speech and listening, I'd say I've got a little genius on my hands! Alright, he's already had a little hearing in the left ear, but he has progressed A TON since activation. We are trying to get him to spontaneously say two word phrases. He will repeat a phrase after it being modeled for him, most of it is just the intonation. Apple, open, all done, more, dad, mom, mmm for milk, up, jump, baby, doggy, bubbles, ball, down, and night-night are some of the other words he says pretty clearly. W is a hard sound too, it comes out as the y sound, but if we practice, he can get the w sound out. So when he says yah-yah he means water. He sings Twinkle-Twinkle pretty well, as well as Itsy=bitsy spider. We have some other songs that go with the therapy we do that he will sing. I love when we sing, "Blink, blink, blink, your eyes, blink your eyes together, blink, blink, blink your eyes, blink your eyes together." He really blinks his eyes! And he is trying so hard to do it, that you can't help but laugh. I will have to get that one recorded. That would be fun to watch. Ok, so anyways, that's life. Lots of running around to doctors and therapy. I have a neighbor who is just entering the life of having a special needs child and all the medical and therapy that's involved. She is just entering this new world, and I guess I've been here so long, I can't even imagine what life would be without all the craziness.

Kate and Her Violin

On December 27th, Kate played with a group of young violinists at the Washington D.C. LDS Temple Visitor Center.  She was very excited to be a part of it.


Here is a couple of videos of her playing.  These are only a few of the pieces they performed.

Activation Day

It has been almost two weeks since Seth was activated and I am very slow at getting this posted.  Here are a few videos of Seth's activation.

The first video is activation of individual electrodes.




The second video is activation of all electrodes.  He doesn't freak out, but he does turn to me as if unsure of what's going on.



Because Seth has hearing in the left ear, sound is not new to him.  This is great in terms of getting him to understand that sound has meaning.  I'm hoping this will make the process of teaching him to talk and listen a little easier.  In the last two weeks Seth's personality has really bloomed!  It's like having this new hearing opened up a something in him and he's so funny to watch.  He's getting new words as well.  His newest words are eyes, nose, and mouth.  The other neat thing is that he has taken an interest in television.  Before the CI, he had very little interest in watching anything.  Now he loves to watch The Backyardigans. He'll even sing the song when he wants it!  He doesn't sing the words necessarily, but the the tune is there!


This next video is of Seth opening a card given to him from a sweet sister in our ward.  It was for his activation day.

The above picture is us with Dr. Rivera, the surgeon who implanted Seth.  

Here is Seth with his Koala.  His Koala got his CI the same day Seth did!  So cute! 

Happy Happy Birthday Alex Dear!

So Alex just celebrated his 13th birthday!  He's officially a teenager, but always a kid at heart!  Now, what did he get for his birthday?  He finally has the complete series of Walker, Texas Ranger, capping it off with season 7.  (There are 8 seasons all together.) Yes, Alex received them out of order, but that's the way he wanted them.  He likes that there is more of Syd and Gage in Season 7.  If you are a follower, you know what I'm talking about.  With the money Grandma and Grandpa Stailey sent him, he bought 4 Archie comic books (I don't have a clue where this obsession started) and we went to the thrift shop and found ANOTHER Little People's Bus and several more Little People for his collection.  We have awesome thrift stores.  We tried to get Alex to have a couple of friends over for his birthday, but he wasn't interested.  Of course we had pizza, his favorite food, and cake and ice cream.  He could care less about any of the decorations or singing, he just wanted cake and ice cream and his Walker movies.  He's too funny.

 Alex watching Daddy light the candles!

 Staring at the cake while we sing to him!

 I love his mouth in this picture because he's trying not to smile while we are singing!

 It looks like Alex is thinking, "Oh, I can't wait to eat that cake!"

Trying to blow out the candles!  He had a hard time blowing because he was laughing so hard.  So the other kids helped him blow it out!

Ok, here's Alex's birth story, as I don't think I've ever posted it.  I copied and pasted it from a scrap book I'm making. 

 Alex wasn't due until around the 5th of December.  On the night of November 9th, I started having some different kind of contractions, not like the Braxton-Hicks contractions I was use to.  I had no idea what was happening.  The contractions were about a half hour apart.  I was a bit concerned about this because I still had three weeks to go!  I called the nurse at the hospital and she told us that we shouldn't be too concerned until the contractions were about 5 minutes apart.  Alex's labor was text book.  Contractions started about 30 minutes apart and slowly and gradually they got stronger and closer together.  Of course, I was in denial the whole time that I was actually in labor.  All the next day on the 10th, we just kept waiting and timing the contractions.  I really was in a lot of pain, but I really didn't think I was in labor.  We went over to my parents house and I told my mom what was going on and after she watched me go through a contraction, she told me she thought I was really in labor and maybe should go to the hospital.  So, we went home and finished packing my bags and headed to the hospital, which was only a couple of blocks away from the house.  Still in denial, I told Todd to leave all my stuff in the car because I didn't want to be embarrased if this was a "false alarm".  We got up to the labor and delivery floor, got checked in, and the nurse checked to see how far I was dilated.  We were all shocked when she told us I was already 9 cm dilated!  I was handling the contractions ok, and we'd thought we'd be able to get through the rest of labor and delivery without any pain medications.  The doctor arrived pretty quickly but was a suspicious  that Alex wasn't

facing the right direction, that is, head down.  We did a quick ultrasound, and sure enough, his bumb was wanting to come first.  So, we were advised that a c-section would be the best way for Alex to come.  Since I was already so far dilated, preperations for the c-section were quite hurried.  It is really kind of a blur to me all that went on.  I was prepped with IV's, taken to the surgery floor, given a spinal block, and drapped with all the blue drappings they use!  After I was given the spinal block, it was a relief not to feel the contractions anymore.  I just layed back and waited.  I didn't even know that had started the surgery until I asked a nurse if they had started, and she confirmed that they were will into it already.  When they pulled Alex out, he did not cry.  They took him and begun resucitating him. Of course I didn't know this at the time.  He

must have finally gave out a cry because I remember being reassured about things, but I don't remember exactly.  They wrapped him up and brought him next to me, took a quick picture, and they whisked him off back to the nursery.  After that, they put something in my IV that made me fall asleep as I don't remember anything afterwards until the next morning.  My mom and sisters watched the nurses bathe him from outside the nursery and mom said that was the only time she heard him cry.  Alex slept from them on.  We couldn't get him to wake up or nurse.  They had to put a feeding tube down his nose and had me pump milk to feed him.  Something wasn't right and the doctor was running all sorts of tests to figure out why.  After three days, they let me go home but not Alex.  This was a Friday.  On Saturday they had Todd and I

both come and talk with the doctor about transporting Alex to University of New Mexico Children's Hospital for further testing.  I was so scared that he was going to die, but the doctor and nurses kept saying he was ok in that regards, we just needed to understand why he wasn't wanting to wake up and especially eat!  So, Alex was transported by ambulance to the local airport where he then was flown up to Albuquerque to UNM's Children's Hospital.  I decided not to go with him, as I had no way of getting there, and no place to stay, and still recovering from surgery.  I felt he would be ok.  The following Wednesday, Todd and I drove up to Albuquerque to see Alex and we had the opportunity to speak with one of the doctor's there.  She was a geneticist and specialized in Prader-Willi Syndrome.  She told us she suspected he had PWS, but did

not have the results back yet from a blood test they had done.  She was pretty confident in her assumptions, and a few days later she called to confirm it.  We were glad for a diagnosis, but still sad that he had something wrong.  But more happy that they were going to let Alex be transferred back to the hospital in Alamogordo.  When he got back to Alamogordo, it was decided that Alex didn't need to be in the hospital to monitor his tube feedings as this could be done at home.  Todd and I could tube feed him just as easily.  He was also on a little oxygen, but that was no big deal.  We were so excited to have Alex finally come home!  After three weeks in the hospital, the day after Thanksgiving, Alex got to come home! 

A quick picture after being checked over by the doctors and successful resuscitation.

Another quick picture with Mom before heading to the nursery.

Cochlear Implant Surgery Day!

Friday was the big day!  Seth got his cochlear implant done.  We arrived at the hospital at 5:30 a.m. to check in.  They took us to aside and did a few routine things (temperature, O2 sats, etc.) and then after a little bit of waiting, they took us to our room in the PACU (post anesthesia care unit) where Seth would return after surgery.  A little after 7:00 a.m. we finally met with Anesthesia and the Surgeons.  The pictures below are our attempts at keeping Seth happy while we were waiting.  You can see in the clock that it is 6:35 in the morning.    It seems you do a lot of waiting at the hospital!  

The bed makes a good slide!

 At 7:49, it was time to head to surgery.  Todd got to carry Seth right into the operating room.  He was dressed up in a white jumpsuit complete with booties and a cap!  I should have gotten a picture. Oh well.  Seth is daddy's little boy right now, so it only seemed appropriate to let Seth have his favorite man take him in.  I headed to the waiting area to wait.  During the surgery, the nurse called twice to tell us how things were going.  On the second phone call, her update was that they were trying to get the cochlear in.  I just assumed that this meant they were working on it.  (After meeting with the surgeon, I finally understood why she said "trying".)  Seth had to have two procedures done.  One thing they did was to take out the tube that was in his ear and close that hole up.  We were told that you usually don't have a tube in your ear and a Cochlear Implant in the same ear. This would take approximately an hour.  And of course the other thing they did was the Cochlear Implant.  This would take approximately three hours.  So, we sat down to wait.  Todd had worked the night before and tried to get some sleep in.  He tried the waiting room couch, and then ended up in his car for a little while.  By hour five, we were thinking, wow! this is taking a little longer.  Fifteen minutes later the nurse calls and says they are finally through and that the surgeons would be up shortly to talk to us.  When they arrived, they took us to the room next door and one of the first things the surgeon told us was that Seth had an unusally anatomy.  In all of the other 149 cochlear implants that he had done, he had never seen anything like Seth's.  When the surgeon began drilling through the bone to get to the cochlea, he said normally it's like cutting through butter, but with Seth, he really had to drill, which is unusual.  He said he had to stop and double check things and think things through.  He wanted to be sure he was doing everything right.  I'm not exactly sure what is going on in Seth's ears as far as the anatomy is concerned, but he mentioned things like cochlear ossification and otosclerosis.  Both these things have to do with the irregular ways the bones in the ears can grow. (You can google both these terms to learn more about it.)  It is his opinion that this is why Seth is deaf as both these conditions cause deafness.  When we meet with him again, I will see if we can get this cleared up and have a precise diagnosis about what is going on in his ears.  We were suppose to have a genetic test done to see if this is caused by a specific gene, but there was a mix up in the vials, so it wouldn't be able to get done.  Oh well, we'll just try again another time for that.  If it is genetic, then at least he knows his children may be at risk for being deaf.  If not, than it was just one of those kooky flaws or it could be because of his prematurity as well.  Prematurity plays havoc on the eyes, why not the ears?  So, after talking with the surgeons, we got to go back to see Seth, and he was not a happy camper!  He did not like anything that was going on and kept trying to throw up.  After a little medicine to help that, he fell into a deep slumber. Below is a picture of the incision behind his ear.  Normally, his head would be all wrapped up, but Seth would have none of that, so the surgeon said not to fight him and just keep it off.

 The picture right above reminds me so much of his face after his final surgery in the NICU.  His eyes would get all puffy and that's what they did this time as well.  Below shows us finally out of the PACU and into an area where we waited until we felt ok with taking Seth home.  Of course, we didn't stay there long.  That's a perk of having a husband as a nurse!

 And this picture above is Seth with his Koala.  All cochlear implant pediatric patients get one.  The koala's head is all wrapped up like Seth's should have been.  In a few weeks when Seth has his CI activated, the koala will get his CI as well.  So cute!  Now, just to make things clear if you don't understand.  The cochlear implant is not activated right now.  Some people at church made comments that led me to think that they thought he could hear right away, but I had to correct them.  We will wait about four weeks to let everything heal.  We will then see the audiologist who will attach the outer parts of the implant, the part that goes behind his ear and attaches to the magnet that was implanted under his scalp.  Over a period of several months, we will work with Seth to adjust his implant to the right settings.  We will also be working with him to take those sounds that he hears and turn them into words.  It will take time for his brain to take all those sounds and divide them up and put meaning with it.  But at least he's had some experience with sound, so he knows words have meaning.  I can't wait for activation, but on the other hand have to prepare for the fact that it may not be just that simple.