October 2013

October is always eventful in our home because of our birthdays and Halloween.  However, because we really didn't do anything to celebrate either Jay's or my birthday this year, October was pretty much no different than any other month.  I did receive a new calling in our ward though.  I am no longer the finance person for the Scouts.  I am now the Co-Cub Master for the Cub Scouts.  Not really sure how I feel about this change yet.  Jay is also serving in the Cub Scouts, so this is going to be kind of difficult on our family to have both of us in the same organization.  I just feel bad that we won't be able to give 100% to our callings because we won't ever be able to have both of us at the meetings because one of us will have to be home with the kids.  When they called me to this new calling, they said that it would help us get familiar with the Cub Scouts because Talen should be starting it when he turns 8.  I understand that, but still not sure if this will be a good fit for our family.  I guess we will just have to see how it all works out.  The only other bit of new is that we received the results back from Talen's scope.  Everything looks great.  I know this is good news, but I was kind of hoping it would give us a reason why Talen has been doing the wiggles so much.  Oh well, can't argue with everything being good now can I?

Trick or Treating

After an hour of trying to get the kids all ready in their costumes, we made it out trick or treating!  We met up with the Adams's and went around our neighborhood.  Daxton really enjoyed it this year.  He was so cute too.  Without any prompting, he started grabbing two pieces of candy at every door - one for him and one for Talen.  Every time, he would say, "Here is one for Talen" and put it in Talen's bucket.  What a nice brother!!  Carter only lasted about two houses before he fell asleep.  After about an hour an a half, Jay and I had our fill, so we left Kennedy with Mark & Eliza and we took the boys home.  They all had a blast!!!

Riverside Halloween Parade

Every year, the school holds a Halloween parade so the kids can show off their costumes to their parents and all the other students.  This year, Dax dressed up too and jumped on the front of Talen's wheelchair.  He just loved waving to all the people!!  I almost missed getting a picture of Kennedy because another student had her exact same wolf costume.  We could only tell that it was her by her shoes!!  Now that is what I call a good costume!!

Talen's new car seat!!

When we had Carter, it became pretty clear that we needed a new vehicle (poor Kennedy was squished between two car seats).   We could not afford a vehicle what was wheelchair assessable, so  after much research and prayer, we found a vehicle that would accommodate our family's special needs.  We also had to order a special car seat for Talen (over +$700, special needs equipment is so pricy!!)  But, when it finally arrived, it was totally worth it.  He loves it!!  It holds him so well because it is slightly reclined (this is why we had to get a vehicle with bucket seats for the second row and extended back so that we could fit his wheelchair in too).  And for an added bonus, it has a little tv that he can watch his movies on.  Thank heavens I can finally get rid of our beat-up portable dvd player and Talen is loving forward facing!!

Dax ate a chocolate shake . . . I think he liked it!!

Family 2 Family Halloween Party

The group of moms that have kids with special needs that I occasionally meet with for "Mom's Night Out" has now formed "Southern Utah's Family to Family Network."  We decided to have a Halloween Party as our first big kick-off event.  Sadly, the weather didn't cooperate and it wasn't very highly attended, but we had a great time.  The kids got all dressed up in their costumes (this year I convinced my children to be the 3 little pigs and the big bad wolf).  There were a bunch of games, treats, and toys to entertain the little ones.  We didn't stay too long because we forgot to bring Talen's food, but sometimes it's just nice to get out of the house.

Talen's friends - Carter Nelson & Whitney Anderson

   

Thinner Winner

Summit Athletic Club (the gym that Jay goes to) decided to have a contest similar to "The Biggest Loser," but it is called "Thinner Winner."  This competition goes for 6 weeks and it is a team event.  Jay and our two friends, John Brannon and Mark Adams, decided to make create a team "Two Crackers and a Pineapple" and they entered the competition.  It cost $100 per teammate to enter and the winning team will split $2000.  (I am already planning on how I will spend my our $666.67!)  The initial weigh-in and the competition kick-off was on September 6th.  After sizing up their competition, we figured they had a pretty good shot at winning this thing!!  The first weigh-in was on September 18th.  Jay was down 10 pounds, Mark was down 10 pounds, and John was down 2.  (In all fairness, John had less to lose and he had to go out of town on business for a week, so we couldn't give him too much grief, but he better pick things up!)  The second weigh-in was on October 9th.  Jay was down a total of 22 pounds, Mark down to 18, and John was down to 12.  The final weigh-in was on October 16th.  Jay lost a total of 29.7 pounds, Mark lost 25.6, and John lost 18.  The big grand finale where they announced the winners was held on October 18th.  We were so optimistic, but they didn't quite pull it off.  They came in second place, bummer!!!  We missed out on the $2000, but they each got a $75 gift certificate to Anasazi Steakhouse.  They also announced that Jay was the biggest "male" weight loser.  He lost 12.25% of his body weight!  I was totally bummed that they lost, but so proud of our boys.  I know Jay put in a ton of work and saw fantastic results.  Very Proud of my little Cracker!!

 

 

 

Cheer Clinic

Our neighbor is a Pine View High School Cheerleader and she came over to see if Kennedy wanted to attend their cheer clinic.  Kennedy thought it would be fun, so we let her.  She has spent the last couple days practicing for their performance at half time of the Pine View High School football game tonight.  Afterwards, she said she really enjoyed it.  I think that was mostly because it meant that she got to spend more time with her good friend Claire.  What a couple of cute girls!!!

 

Carter - 14 1/2 weeks old (3 months)

Official Duke Letter

Finally an answer!!

After 6 years, 6 months, 3 weeks, and 1 day we finally received the phone call that we have been waiting for!  Dr. Shashi and Kelly Schoch (a certified genetic counselor) from Duke University called us with a diagnosis for Talen.  He has a G42R mutation on his GNAO1 gene.  On September 5th there was an article published in The American Journal of Human Genetics that identified four individuals with mutations in their GNAO1 gene.  Each individual has a different mutation, but it is all in the same gene.  Talen's mutation is also different from each of the other four individuals.  This means that, as of today, Talen is the only one with this specific mutation on this specific gene.  He is case #1 for his disease.  (We always figured he was one in a million, but apparently he is really one in more than 7 billion!)  Each of the other four individuals showed "severe intellectual disability and motor developmental delay,  epileptic encephalopathy, and two of them showed involuntary movements."  In addition, none could speak or sit up and only one of the four had head control.  Dr. Shashi said that she checked both Jay's and my DNA and neither of us have a mutation on this gene.  This was very significant because it tells us that (1) when Talen's DNA was splitting, the mutation occured on it's own - there was nothing that we could have done to prevent it and (2) none of our other children will be carriers - so there is no need for them to worry about this in their future.  Also, if Jay and I were to have any other children (which we are not planning on) there would be a less than 1% chance that we would have another child like Talen.  Because there are only four other individuals in the world that have been identified with this problem, there is no way to tell life expectancy.  However, the ages of the individuals in the study ranged from 4 to 13 (one died at 11 months due to respiratory problems).  It is encouraging knowing that someone else with Talen's problem has lived to 13!!  Also, because there are only 4, there is no medication that can be taken to help - we can only treat the current symptoms.  We were told to periodically check with NIH (National Institutes of Health) to see if there are any clinical trials being done on the GNAO1 gene.  Dr. Shashi will also pass on all of Talen's information on to our geneticist and neurologist so that if they see any clinical trials, we can be informed of them.
We weren't expecting there to be a cure for Talen, so all of this information is purely good news in my opinion.  As much as I didn't want to admit it, I was always worried that this was caused by something that I had done or even that I didn't do something that I should have - if that makes any sense.  On a spiritual note, we had always thought that God made Talen this way because that was the way he was supposed to be.  This diagnosis confirms that even more to me now.  I imagine that, in Heaven, Talen must have done something pretty spectacular to have such a stellar spirit that Heavenly Father needed to protect him from Satan.  This was the way to insure that no matter how hard Satan tried, he would have no effect on Talen.  Talen is perfect and will forever be perfect.  He has already secured his spot next to our Heavenly Father and I am so thankful and blessed that he allowed me to be the mother of such an amazing person.  I know that no matter how bad I may be as a parent, I have at least one child that has already made it!  You can't get much better than that!!
So, I know that they will probably never read this, but I want to thank the amazing doctors at Duke University that worked so hard to get us an answer that we have been hoping and praying for for so long.  I want to thank everyone that had a hand in getting us down the path that lead us to those doctors.  Thank you Bertrand and family, Thank you Nacole and Now I Can, Thank you Laura and Matt Cooper, Thank you TLC, the list goes on and on.  But without each of you we would never have gotten to where we are today.  We love and appreciate you more than you will ever know!!  I told Jay that next to the birth of our four children and our wedding day, today was one of the most significant day in my life so far!!        

Talen had a scope

Lately, Talen has started arching really bad again.  Both Jay and I feel that it has something to do with discomfort that he is experiencing internally.  So we have spoken with Talen's pediatrician and decided to do an upper scope to see if there is anything going on that could be resolved.  Normally, we have all surgeries/procedures done at Primary's, but since Dr. Kaddu would be able to perform it himself we decided to have it done here.  We got at the hospital at 6:45 a.m., got the IV put in (took them 3 tries so he has major bruises), and sent him off.  The procedure when really quickly.  We were only in the waiting room for about 30 minutes when Kaddu came walking back out.  He said that everything looked really good.  He couldn't see any signs of ulcers or irritations, but he took some biopsies, so we will wait to see how they come back.  Talen recovered really quickly and we were back home by 9 a.m.  (So glad we didn't travel all the way up to Salt Lake for that!)

Esophagus

 

Top of Stomach

Stomach

Talen's button from the inside!!

Carter's Cheeser

General Conference

I gave the kids little activities to do during General Conference.  When President Monson got up to speak I asked them both to draw him for me.  Jay started to help Dax, but he didn't want any help.  When he handed me his picture, I realized why.  He didn't want to draw, he just wanted to poke holes in the paper, little stinker!!!

President Thomas S. Monson

Kennedy's Portrait

Daxton's Portrait (if you can call it that)