September 2012

September was a very rough month at our house.  On the 8th (Saturday) around 10 pm Talen was getting really fidgety and I could tell that he was going to have a really hard night.  So, I asked Jay if he thought that we should just take him into the ER now, or wait a couple hours until he got worse.  I knew that either way, we would end up taking him in, so we decided to just do it now instead of waiting until the middle of the night.  We were hoping they would just be able to give him some medication to help him relax.  When I first got there, I felt a little silly for going in because he had calmed down a bit, but something in me told me that he would start up again soon.  Sure enough, by the time the doctor made it in to see us, Talen was in full arching, screaming, freak-out mode.  They wanted to do some blood tests, urine test, a CT scan, and an x-ray to see if they could find out what was bothering him.  The problem was that they wanted to do all the tests without giving him something to relax him first.  They came in to draw his blood and I told them that there was no way they were going to try to stick a needle in him without giving him something to take the edge off.  Thankfully, the doctor agreed, so they gave him a sedative.  It was a nasal one and kicked in rather quickly - knocked him right out.  They did all the tests and surprise, surprise, everything came back normal (where have I heard that before???)  I was really pleased with the doctor because he said that something was definitely wrong and he was going to admit Talen overnight so they could figure out what it was.  Finally, someone believes us!!!  So, Jay brought me a bag of personal items and Talen and I were escorted via ambulance from the ER to the old hospital.  We got all checked into our room and around 3 am we finally made it to bed.  Talen was sedated most of the next day (Sunday).  I had assumed that we would be released some time Sunday but after talking with Dr. Kaddu he wanted us to stay another night.  After some long discussions, we have decided to try a handful of things.  We both feel that part of Talen's problems has something to do with his stomach/digestion.  Dr. Kaddu thinks he may be allergic to milk, so we have taken him off Pedisure and started him on a soy based formula - Elecare.  Dr. Kaddu was finally able to get a hold of our neurologist, Dr. Sakonju, and she wants Talen on Neurontin (Gabapentin) and Kepra for seizures.  I don't like all the changes at once because we won't know what is helping and what isn't, but we just don't have time to do one at a time.  So we waited around all day Monday for Dr. Kaddu to come back and release us, but he wanted us to stay overnight again.  After three days in the hospital, I was very ready to get home, so I can only image how bad Talen wanted to be home too.  Dr. Kaddu said that the choice to stay or leave was up to us, but he would prefer us to stay.  Both Jay and I decided that we could take just as good of care of him at home as we could in the hospital, so we asked to be released.  We made it home around 10 pm that night.  We are keeping Talen sedated for the next week or so then we will slowly take him off of the sedation.  We hope that will give his body enough time to take on all the changes in formula and medication so that he will no longer be in pain once he is off the sedative.  My mom decided to come and help out for a bit so she arrived on the 13th.  It sure was nice to have the extra hands, especially since we hadn't been sleeping all that much because of Talen's arching.  We had a follow up appointment with Dr. Kaddu on Friday to make sure that everything was going well.  By the end of the month, we had him completely off of the sedative.  He has only had two little arching episodes since all the changes, so things are definitely looking up.
Amid all the crazy hospital/sickness issues with Talen, I got a phone call from the lady at the school that was helping with Talen's communication device.  They want to re-try the first device that we tried on him, the Dyna-vox.  We didn't like it the first time because the tracking was really bad, but they have a new system and the rep thought it would work much better for him now.  So they brought it over to try again.  I really like this one now.  It doesn't seem as complicated as the Echo 2 but still has most of the features that we liked.  So Dyna-vox is going to give us another trial period so that we can get enough data to try to get funded to get our own.  Cross you fingers!!
Our biggest news of all came at the end of the month.  Long story short, I got a phone call from Duke University.  They want to do exome sequencing on Talen.  They only take 4 patients every 3 months and they want Talen.  We can either go on Oct 29th or Dec 31st or hold off until next year.  I called Jay, and we decided the sooner the better so we are scheduled for Oct 29th.  They require both Jay and I come as well so that they can get our DNA to test against Talens.  This is the same type of clinic as the NIH Clinic in Maryland, but according to our neurologist, this one is WAY better!  When Dr. Sakonju found out that we got into Duke she couldn't stop saying how shocked she was that we got in.  She said several times, "I don't know how you got in, even I couldn't get you in!!"  Of course, I know how we got in - prayers, fasting, faith, hope, and more prayers!!  The Lord has definitely kept us on our toes this month, let's pray that next month is a little less dramatic!!  

Happy Birthday Vaughn Family (minus Dax)

With all that has been going on lately, I just don't have the energy to have four different birthday parties this year.  So, I decided to simplify!  We celebrated all our birthdays on the same day.  I made three different desserts and invited our family over to party.  With Talen's upcoming trip to Duke, we asked that in lieu of gifts, we would prefer money to help get us to North Carolina.  So, Kennedy was really the only one that had any gifts to open.  Grandma Cindy got her several webkins and Grandma Robin got her a Wii.  She also got some Wii games and Littlest Pet Shop toys.  It was nice to have everyone over, but it was also nice to get the celebrating over as well.  Simple, simple, simple.  This was so easy that it may become a yearly thing (wink, wink).

 

 

 

Kenndy's Friend Party

Since Kennedy's birthday fell on a Friday, I decided that it would be fun to let her take some friends to the newly released "Hotel Transylvania" movie.  I told her that she could only invite three friends (since that it how many extra seats I have in the van).  She invited Claire Adams, Katelyn Leavitt, and Lana Spragg.  The girls all came over shortly after school got out and played for a couple hours.  About an hour before we had to leave I fed them chicken nuggets and carrots and they each got a cupcake from the Sweet Tooth Fairy (so yummy!!).  As soon as they were finished I let her open her gifts from her friends and from us.  She got Littlest Pet Shop toys, 2 new church dresses, 3 new webkins, webkins clothes, a Fur Real chipmunk, and Monopoly.  As soon as she was done, we piled in the van and headed off to the movie.  Cathy said that she and Amy wanted to see the show too so they met us there.  I gave each of them little candy bags, capri suns, and popcorn.  The show was really cute (I was very relieved because the movies of birthdays past haven't always been the best.)  On our way home, we dropped off all the girls at their houses and called it a night.  What a fun little birthday for our favorite 9 year old!!

AYSO Soccer

I had planned on signing Kennedy up for soccer, but I misplaced the paper.  When I found it again, I noticed that I had missed the deadline.  So, I figured, we will just have to wait until next season comes around.  A couple weeks later I got a phone call.  Apparently so few kids signed up that they were allowing anyone who wanted to play to still sign up.  So, I signed her up and called a couple friends to see if they wanted to sign up their girls too.  The next day she had her first practice and two days after that was her first game.  I really like this format better.  There are a lot fewer kids on the team, so the girls have more opportunities to kick the ball.  Her team is the Leaping Leopards (she was excited because she said that she got to pick their name) and her coaches are Bro. Meadows and Bro. Huddleston (both from our ward).  There are 7 or 8 girls on her team including one of her good friends Katelyn Leavitt.  Go KiKi!!!

Chillin at the game

Talen

 Six years ago today was one of the three best days of my life!!  We didn't know it at the time, but our lives would be forever changed.  Not in the normal way that having a child changes your life, but something completely different.  I had always imagined that I would have a couple kids, raise them up the best that I could, they would have a normal childhood, go to school, go to college, go on missions, get married, etc. etc. etc. - basically the same things that I assume most young mothers dream of.  I never imagined that I would be blessed with one of the Lord's most precious spirits.  And, yes, I say blessed because that is exactly what he is, a blessing!!  Talen has changed not only my life, but my dreams too.  When we first found out that he had problems, I used to dream that he would be "normal" - that we could fix him.  Turns out that it was just our perspective that needed fixing.  I know that he is the way that he is because that is exactly what we needed him to be.  Without him, our lives would be completely different - we would be completely different.  He has taught me tolerance, patience, gratitude, and love in a way that I would never had known had it not been for our sweet Talen.  I'm not a perfect person, or anywhere near it actually, but I know that I am better than I ever could have been without Talen.  Being around him is like being in the presence of a heavenly being - how could I not be a better person?!?    
I would never have imagined it 6 years ago, but who would have thought that a little boy who has not yet uttered a single word would have touched the lives of so many - not only us, but our extended family, our friends, our neighbors, our ward, and our community.  I hear on a daily basis how "he has such a sweet spirit" and "it is just nice to be around him."  Why God trusted me with Talen, I will never know, but I pray that I can live up to the expectations that He and Talen both have for me.
I've always said Talen is the one that I am worried about now (for health reasons), but it is Kennedy and Daxton that I worry about for the future.  I know that no matter what the future brings or how bad I mess up as a mother, Talen has already secured himself a spot on the right hand of God.  I know that may sound strange, but it is very comforting when we are constantly surrounded by the evils and temptations of the world.  What peace it brings to have that kind of knowledge!!
Talen, you are one the best pieces of me.  I love you more than you will ever know!  I know it may not be in this life, but I look forward to the day when we can sit down together and talk about all the amazing things that I know you are dying to tell us.  You make me so happy, I can't even describe it in words!!  I love you my sweet, sweet boy!!    

Face Juggler

Brooke came over the other night to give Talen a massage.  While she was here, they started playing with an app on her phone called Face Juggler.  This was the result!! (It's a good thing they don't really look like this - scary!! hehehe)

Daxton and Grandma Cindy

Talen and Kennedy

Kennedy and Jay

Daxton and Jay

Golf club

Jay sold his motorcycle and with the money he bought a new set of golf clubs.  He likes to go practice swinging in the garage and Daxton likes to go try too.  He sure tries hard, but Jay's golf clubs are so big that just picking one up nearly tips him over.  So, Jay started looking for a little club for Daxton.  The other day Jay and Grandpa Victor decided to check Deseret Industries to see if anyone had turned one in.  We got lucky and Grandpa Vic found one in the bottom of a bag with a bunch of adult size clubs.  So Jay made the $2 purchase and now Dax has his own golf club!!  He was so cute when he first saw it.  He had obviously been watching Jay, because as soon as we gave it to him, he immediately tried to hit the balls.  Who knows, we may have the next Tiger Woods on our hands!?!?!

Good Kids!!

Talen was in one of is wiggly moods and since he has been arching really bad and cutting off his breathing, we decided that it is best to always keep him within eyesight.  So, I put down a blanket on the floor and let him kick around a bit.  I was doing work on the computer and when I turned around to check on him, Daxton had laid down beside him.  KiKi was nearby and when she saw that Dax was cuddling Talen, she had to get in on the action too.  So, of course, I pulled out my camera.  I have the best kids ever!!

 

My boys

I gotta find a better hiding spot for the Reeces Pieces!!