Monday, December 24, 2012

Day +261

It's been a month of ups and downs.  We had to say goodbye to Josh's grandmother who passed away at the end of November.  We will miss her very much, but we find comfort in our knowledge of the plan and purpose of life.

Ethan performed some musical numbers with the children's group at our church's annual Nativity Festival.  We were joined by his aunt, uncle, and grandpa.  It was such a great reminder of the reason for the season.  Here is a picture of Ethan after his performance.

Two weeks ago, Jacob came down with a stomach virus, which then got passed to the rest of the family.  I had to keep a close eye on him to make sure he wasn't getting dehydrated.  He pulled through without hospitalization and seemed to be better, but then last week he started getting bloated and having diarrhea again.  One night he woke up crying with stomach pain so I took him to the ER.  They examined his tummy, ordered some stool cultures, and sent us home.  Every test and xray has come back negative for the types of infections they screen, including pneumatosis and c.diff, both of which he has a history.  His blood work actually looked great.  Almost everything was in the normal range, and those that were outside of normal, were only by a point or two.  So, we're not really sure what is going on with his tummy.  Hopefully it resolves on its own, or else he could end up having to get yet another endoscopy with biopsy, and could end up on steroids again to settle things down.  

One of the fun things from this month was I was able to help out at Ethan's gingerbread decorating party at school!

Here are my two little Santa's helpers!

On Saturday, we enjoyed our first family Christmas gathering.  Jacob got a little overwhelmed at first.  He's not used to being around any large number of people.  So I took him home to relax for a little while, and when we went back, he adjusted just fine.  

Monday, December 03, 2012

Thanksgiving (Day 240)

There truly is so much for our family to be thankful for.  We have been able to enjoy a period of good health for Jacob these past 3 months and hope that means that his immune system is kicking in like it should.  I can't believe we got a 6 week break from seeing our doctor.  I'm starting to find ways to fill my time.  With stretched out breaks between visits, no central line, and only two medications to keep stocked, we are in a good place.

For Thanksgiving break, we actually ventured out to our family cabin in Northern Utah.  We enjoyed time with family and nature.  Jacob was so cute as we traveled.  We had to keep explaining to him what a vacation was and that we weren't going home at the end of the day, but rather, at the end of the week!  My little guy couldn't remember ever having gone on vacation.  Of course we remained as vigilant as we could when it came to germs, and he stayed well throughout the trip.  Ethan, on the other hand, began coughing yesterday morning.  I'm sure it's something he picked up at school, which I'm afraid may have spread to Jacob.

We loved the snow!

On our drive home from Utah, we were able to stop at the St. George Temple visitor's center.  Inside is a beautiful Christus statue that we were able to sit in front of and admire.  The missionaries control an audio portion that has different scriptural quotes of Jesus' words.  It started out, "Behold, I am Jesus Christ."  At that moment, Jacob happily said, "Hi, I'm Jacob.  And this is my brother Ethan."  It was so touching.  Jacob loves his Savior, and I know he has been very close to Him many times in his life.

St. George Temple Visitor's Center

Jacob's appointments today went mostly well.  His blood work is showing signs of immune recovery, and all of his results were in range, except his AST (liver function test), which came back high.  The fluid around his heart is completely gone!  The only setback today was a fever of 101.0 during vitals.  That really surprised me.  He hadn't felt hot to me.  By the time we got home his fever was gone but he needed a nap.  Plus, he hasn't wanted to eat anything all day.  Hopefully he wakes up from his nap hungry.  The other hard part about today was that he had to get poked twice during labs.  I think the technician might have been inexperienced.  My poor little guy cried and kept saying "That's a big owie. Ok, that's enough" over and over.  I had to try really hard not to get irritated with the tech.  Next time I will ask to have his blood work done at the Rancho lab instead of the L.A. one.  I was not impressed.  I had even put numbing cream on.

So for now, I need to keep a close eye on him to make sure his symptoms don't worsen and that his fever clears in 3-4 days.  I think after having such a nice and healthy break from the doctor, we were jinxed or something for going back in today... Not really, but I have to wonder... :P  If his infection clears on its own, then we don't need to go back into L.A. for another 6-8 weeks.  At that time, he will probably be ready to start his immunizations again.  With blood work and immunizations, it's not going to be a pleasant visit.  But I'm grateful that he is headed in the right direction.