Genetic Testing Results

Shortly after we learned of Eli's diagnosis (SCID, specifically Reticular Dysgenesis), Logan and I were told that although there was a slim chance Eli happened to develop a random mutation, it was much more likely that Logan and I are genetic carriers of this condition and any of our future children would be at risk of being affected.  We put all of our energy and focus on Eli's health and knew that once we left the hospital we would have our gene mapping done in order to verify whether or not we are SCID carriers.

After Eli passed away, Primary's was incredibly helpful and told us to take as much time as we needed and that when we were ready, they would be happy to help us get our genetic testing done.  Not knowing how long this process would take, Logan and I decided to get it going right away.  Our blood was sent to a doctor in Boston that is studying Eli's specific type of SCID and we received the results this week.  While we couldn't help but have a little bit of hope that the results would come back negative, we were told exactly what we expected to hear: Logan and I are indeed carriers of Eli's type of SCID, Reticular Dysgenesis.  The chance of having a baby with this type of SCID is about 1 in 3 to 5 million.  In the case of Eli's SCID, if one parent is a carrier but the other isn't, he wouldn't have been affected.  Both Logan and I had to be carriers in order to pass it on.  It's a good thing we don't gamble because we have the worst luck ever! ;)

Our next step in this process is to meet with a specialist regarding our options which will probably happen in a couple months but we have a basic idea of what our future likely holds.  There is a 25% chance that any future babies we have will be affected.  While we know that one option is to "roll the dice" and get pregnant and hope we don't have an affected baby, that isn't an option Logan and I are willing to consider.  Fortunately Preimplantation Genetic Diagnosis or Embryo Selection through IVF would allow us to test the embryos before implantation to determine which ones are unaffected allowing us to only implant the healthy ones.  Logan and I know that our journey to having another baby will be long and have many obstacles but we couldn't be more grateful that there is a path available to us that we are comfortable with.

On another note...just like the rest of Utah, Logan and I watched the big "Holy War" last night with some wonderful friends.  I may rethink watching it with the same people next time because there's nothing worse than being surrounded by a bunch of obnoxious Utah fans and feeling like you're the lone Cougar fan.  Although most people are sad they won't be playing each other for a few years, I think I'm happy about it because now I won't have to watch BYU's losing streak continue!

Thanks for such a fun night, everyone!

Sand Hollow

Logan and I took a little road trip down to St. George over Labor Day weekend to go camping at Sand Hollow with some friends.  Things were quite comical from the get-go when we tried squeezing 5 people, all of our gear and 2 dogs into a small Mazda Hatchback.  

These pictures really don't do the scene in the car justice because we were CRAMPED!  We had to play tetris to get the back packed, the three of us in the backseat had a tent and bags of food on our laps and we were basically sitting on each other while the camping chairs, pillows, dogs and food were in the front.  It's an understatement to say it was the longest 4 hour drive we've ever been on!

Once we got there, however, we had a great time!  Leading up to the weekend it looked like we were going to be rained out almost every day but we actually had perfect weather.  The screen on my phone most of the weekend says it all:

Saturday was spent on the lake while we surfed, tubed and hung out on the boat.  Many thanks to Zach and Heidi's aunt and uncle for letting us use their boat and wave runner for the day!

We couldn't leave the beach without Russ and Logan entertaining us with their diving frisbee catches!

Love him!

Sunday we made the short drive to Zion and hiked Angel's Landing.  I can't even describe how amazing it was!  I had never been to Zion before and can't wait to go back.  For those of you that haven't hiked Angel's Landing, it's about 2 1/2 miles each way with a roughly 1,500 foot elevation gain.  The first two miles are loaded with switchbacks while the last half mile is unlike anything I had ever hiked before.  Because of the sheer cliffs on either side, there are chains you hold on to as you climb to ensure you don't fall.  We definitely had a few butterflies as we looked down below.

The following picture is a shot of the last half mile.  I was slightly intimidated at first but loved it once we got going!  

Without a doubt, the view from the top was amazing and more than worth it!

 

 

CMC

 

This hike is a must for anyone visiting Zion!  I can't wait to go back again!

Before heading home on Monday, we enjoyed the beautiful lake one more time and entertained each other with some cliff jumping.  Unfortunately we didn't get a ton of pictures but the girls even braved the 35ish foot jumps!

Thank you, CMC, for such a fun holiday weekend!  Can't wait until next year!

A Fresh Start

Many of you may have already seen my post from Facebook, but for those of you that haven't, yesterday was an exciting day for us!  My wonderful husband went back to school after taking the last several months off and he started a new job!  I couldn't let him walk out the door without taking his first-day-of-school picture!

He's such a good sport!

When Eli was admitted to the hospital Logan was about a month into the semester and he knew right away he wanted to devote as much of his time as possible to being with Eli so he dropped his classes but continued to work.  We both knew he'd have a difficult time focusing in school and I definitely didn't want him to have that extra stress on top of everything else.  I didn't doubt for one second that he would go back to school when things settled down.  Logan typically takes a full summer as well but wasn't able to take any classes during the summer either so I know he was pretty excited to get back into it this semester.  I'm so proud of him for keeping such a positive attitude despite having to push things back a whole year.  

The other half of the news is probably the most exciting!  After working in the auto industry for several years, Logan found a job in the medical field.  This is a huge blessing for us for several reasons.  #1, he wants to go to PA school so he finally has a job in that field.  #2, he was sure he'd have to work weekends and holidays but this family practice is a clinic so he works Monday-Friday and no holidays.  Happy day!  Logan has worked on the weekend since high school so he couldn't be more excited to have a Monday-Friday, 8-5 job doing something he loves.  He will be working part time as an MA and already loved his first day!

I can't believe it's already the end of August!  I love the summer heat so much but can't help but be excited about September approaching for many reasons.  Football season is right around the corner, basketball season is right after that, and of course, the holidays.  Who doesn't love the holidays?  Before we get into all of that, Logan and I are taking one last little getaway down to Sand Hollow with some friends over Labor Day weekend.  It should be a good time!

I have to give a quick shout out to one of my wonderful sister-in-laws.  I mentioned to her that I wanted to use a wall in our apartment for a collage of some pictures of Eli so she came over that night and put it all together, including the "E"!

Thank you, Krystal, for being so talented!  It turned out better than I hoped for!

**For those of you that read my post about the hero party that Logan and I went to, you may remember that KSL was there.  Check out THIS blog for the KSL story that aired on Sunday as well as another really neat video they put together of the balloon launch.  This family is incredible and has taught Logan and I so much.**  

Newport

Mine and Logan's summer travels took another stop this past week.  My family, all 21 of us, went to Newport Beach and had a great time!  It doesn't happen often that we all get together at the same time, especially with one of my brothers and his family living in Minnesota.  We went on this same trip a couple years ago and had a ton of fun so we've been looking forward to going again for quite a while.  We spent a couple days in Disneyland/California Adventure and the rest of the week hanging out at the pool and on the beach.  Rather than bore you with too many words, I'll let the pictures do the talking.

We love the condos we stay in!  They are right by the beach, a short drive to Disneyland and offer this fantastic view from our balcony:

For those of you that aren't familiar with Big Thunder Ranch in Disneyland, it's an all-you-can-eat BBQ restaurant that most of us tried for the first time.  Prepare to be messy when you're finished eating!

Goofy's Kitchen is always a good time, especially for the kiddos!  The 7:00am reservation is a bit early but is definitely worth it!  Unfortunately 3 people weren't able to make it for the picture.

I could take pictures of this little peanut all day long!

There aren't many better ways to entertain the kids than spending the day at the beach!

Logan practically lived in the ice-cold water boogie boarding!  He talked me into joining him for a mere few minutes each day.

We love Crystal Cove Beach!  (And most importantly, the Shake Shack!)

Two of our favorite rides!
(I promise I wasn't really that scared on Splash Mountain)

Hangin' out by the fire

We had such a fun week and are so sad it's over!  Many thanks to my parents for such a fabulous vacation!

A Hero Party!

One of the fabulous families we met while in the hospital had a hero party for their son this morning and Logan and I were lucky enough to be a part of it!  His parents promised him a party because he was so brave when he donated his bone marrow to his older sister.  This party was a great way to honor Lisy and Tyler's true super hero as well as an opportunity to raise awareness for bone marrow donors and recipients.  

A bobble head of the Fish's son was created and attached to a giant weather balloon along with 4 GoPro cameras and a GPS.  The balloon was let go and sometime later today will land shortly after exploding once it reaches a certain height in the atmosphere.  KSL was there to cover the story and spotlight this amazing family that has done so much for the bone marrow and SCID communities.  

I love that the bobble head is wearing the same shirt as the real-life super hero in the picture below.

Each person in this picture has somehow been impacted by SCID and/or a bone marrow transplant or donation.  This is such a neat group of people we're blessed to know!

The amazing Fish family who put on this awesome party
(The two kiddos in front are the bone marrow donor and recipient and the little gal in the pink cape has also had a bone marrow transplant)

Getting ready for lift off!

Thank you, Lisy and Tyler, for letting us join in the festivities!

For those of you not already on the Bone Marrow Registry, take a look at THIS website (www.bethematch.org) for more information and consider joining.  A small sacrifice on our part could be such a blessing and miracle in someone else's life!

My New Escape

For quite some time I have wanted to invest in a new road bike but it never happened because we had more important matters to focus on.  As life started to settle down a bit I brought it up to Logan again and he was all in.  We began doing our homework a few weeks ago and finally found the one!

I'm a complete novice when it comes to cycling but I sure have loved learning!  We were inactive for so long it feels great to get out and finally get back in shape.  The heat has been brutal but we are definitely taking advantage being able to be outside.  Any tips you care to share are absoultely welcome!

Life is treating us well!  We are working here and there, Logan is liking his clinicals for the class he took this summer and we're definitely enjoying the summer!

This picture made me smile today:

I love the tube-free face!

Finally...a random shout out to the Primary's staff for making life in the hospital much more fun than you'd think by doing things like this!