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.

Theme Song For Our Family Photo

Here's the theme song I chose for our family photo:

One of these kids is doin' his own thing
Seven of these kids are kind of the same
But one of these kids is doin' his own thing
Now it's time to play our game
It's time to play our game!


Yeah, that's Alex.  We were lucky he even joined us.  He didn't come out at first and so we took a ton of pictures without him.  Right when we were all done, he decides to join us, but he won't change his clothes, so I was like, whatev', let's just take a few more.  Now I can't get an individual photo of him.  I think I'm going to have to do it while he's outside playing, or I'll never get one.

Who do you think Seth looks like?

So, who do you think Seth looks like in this photo?  My first guess was Yoda.  I love my little guy no matter who he resembles! :)

Dane's teeth

Dane fell this afternoon while he was riding his bike and hit his teeth on his handle bars.  His top two teeth were pushed in quite a bit and it also busted them.  What do you do when you have a mouth injury at 5 in the evening?   I didn't know where to take him.  Because it was just his teeth that were injured and no other lacerations, we decided to call the dentist, and thankfully they were still open!  Our dentists here (Bernstein and Perkins) are the best dentists I have ever been to!  They had us come right in and dropped everything they were doing so they could both make sure that Dane was ok.  They were so nice.  So, after four x-rays and a visual exam, it was obvious that Dane had knocked the top two middle teeth back and that they had been chipped pretty good.  They needed to be moved back into place ASAP, but we would need to see an oral surgeon for this.  So, the dentist called the oral surgeon and had an emergency appointment set up.  We were to meet him in 45 minutes at his office.  He was in Virginia and would have to drive all the way back to Silver Spring.  I kind of felt bad making him drive all this way, but both the dentist and the surgeon said it needed to be moved back into place right away.  Dane was a pretty brave trooper through all this.  He was in a lot of pain, but he let everyone look inside his mouth.  The oral surgeon numbed Dane's mouth real good and gave him some nitrous oxide to relax him.  It didn't look like it was all that hard to push the two teeth around, the surgeon made it look so easy!  The got the two teeth back into position and put a little plastic bridge over the tooth teeth to anchor together so the teeth wouldn't move anymore (that's the white thing on Dane's teeth that you see in the picture).  He also got one stitch to close up a gap that had been made when the teeth were pushed back.  Now Dane can't use his front top teeth to eat for several weeks until the teeth have healed.  I have no idea what this will mean for his two teeth.  We won't know if they will be ok or if they're going to die.  We were told that we needed to see a root canal specialist to see what he thinks.  I'm not sure what they'll do about the teeth being broken either.  That won't be fixed until the teeth are more solid in the gums again and the bridge can come off I'm sure.  What's even more crazy about all this is that this happend right as the missionaries showed up at our house to eat dinner with us!  But crazy doesn't faze me anymore, I'm a seasoned warrior. (I must insert here, without sounding "churchy" or anything, that my Heavenly Father has helped me get to this point, lots of work, but well worth it.)  We just cleaned up Dane's mouth, I took Dane to the dentist, and Todd fed the missionaries.  No big deal.  I think Dane's natural tendency to have his mouth always hanging open saved him from having any mouth injuries.  The dentist and the surgeon were a little surprised he hadn't bitten through his lip when he hit his mouth.  If you know Dane, his mouth is always open and his top teeth are always showing.  See, a blessing in disguise!

The white bridge is covering up both teeth to stabilize them (blood still everywhere, the mouth bleeds forever!). You can see below the bridge how his teeth are broken, looks like a half circle. 

The Missing Piece

The Missing Piece

Surgery Date!

I was shocked and surprised when one of the staff from Bethesda called today to make a pre-op appointment for Seth's October 15th surgery date. I was like, what?  We haven't gotten a date yet?!  After meeting with the surgeon this past Wednesday, he told us to call in two days and they'd let us know what date we could expect for surgery. We were expecting within the month, maybe later. Well, the surgical team decided on a date and got the ball rolling before we knew it!  I was so shocked, but said we'd take it! That's only three weeks away!  It seems like this day has taken forever to get here, now it seems so soon!  Am I doing the right thing?  Seth has no clue what's going to happen to him, how's he going to handle all this?  I'm sure that's just all the jitters and the initial excitement of it all.  Todd will have that day off so we can go together.  We were told from beginning to end, it will be about five hours, the actual surgery lasting about 3 hours.  We were told if all goes well, we could be released from the hospital that afternoon!  Luckily, the youngest patients go first, and so far, Seth is the youngest.  Man, I'd hate to have to wait all day.  So, that's the latest on the CI.