Happy Anniversary!

     Thirteen years!  Yes, that is right, David and I have been married thirteen years as of yesterday.  Wow!  Time flies by.  We have accomplished a lot during those years.  We both completed our bachelor's degrees.  David was commissioned into the Navy and then was able to swear in his brother as an officer in the Air Force. We have enjoyed having three children and look forward to the child that is on the way.  We have moved eight times; lived in five different states; bought two new cars; purchased our first house; and became landlords.
     We have celebrated as all of our siblings have married.  We have become an aunt and uncle for the first time and loved having two nephews and three nieces born.  We saw David's maternal grandparents reach their 50th anniversary and then pass away within months of each other.  We have seen David's paternal grandparents reach their 70th wedding anniversary. We have been through a handful of hospitalizations and through a total of two years apart during three deployments.  We have gotten to travel a lot, including taking a dream trip to Switzerland.
    We have held lots of different callings at church, from Young Men and Young Women, to Primary, Sunday School, Elder's Quorum, girls camp and home and visiting teaching.  We have seen one child baptized and are preparing for Elliana to be baptized.  We have had our testimonies grow and change.
     Wow!  Life is surely an adventure and I am so glad that David and I get to share it together!!!

Tonsils

Christmas break proved to be a good time to have Elliana's tonsils removed.  She has had lots of sore throats and has had large tonsils.  We thought about having her tonsils removed years ago, but she did not weigh enough for the doctor to recommend surgery.  Recently, Elli had some sore throats that required her to get off of her arthritis medicines.  Since she had to be off of the medications in order to have surgery, we realized it would be a great time to have her tonsils removed.  She did really well with her surgery on Friday.  She has had a bit rougher time the last few days, but has truly enjoyed all of the ice pops and ice cream that she has been allowed to eat.  Hopefully we will be saying "goodbye" to so many sore throats.

Good News Times Two....

     Well, after some challenges, we made it through deployment.  David got home to an anxiously awaiting family in the middle of September.  We were thrilled to be back together in one household.  We really enjoyed showing David our new house and around the community that we live in.  We have enjoyed the beach and spending time with David's brother and his family.  It has been such a relief to have David back home.  I love having someone that I can depend on and that I love close by.
    For the second piece of good news, in true Navy fashion, we are now ready to announce that we are expecting our post-deployment baby!  I am due in the beginning of July!  We are very excited.  I went in this week for an ultrasound and our baby had a good-looking heartbeat!  Yeah!
     

So, if is official...

My doctor finally told me that it is official.  I have epilepsy.  Fortunately, I have not had anymore seizures, but my most recent EEG did not come back normal.  The good thing is that I am already taking the seizure medication and it seems to be working fine.  The only down side is that it makes me tired, but I am going to try an extended release tablet that may help with tiredness.  The new diagnosis doesn't really change what we are going to do to treat it, it has just made it seem more real.  My new doctor explained that the ADEM that I had a few years ago can actually trigger epilepsy.  So, at least now I have a better understanding of how this developed.  This will take a little getting used to.

Aloha

     So, I know that I haven't posted for a long time, but I wanted to catch everyone up on what we are doing.  After a seizure in March that was probably caused by a high fever and being really sick with the flu and a bacterial infection, I made a slow, but steady recovery.  The still don't think that I have epilepsy or MS, they think that my immune system just goes into overdrive when I am sick and that causes me to have a seizure.  I spent a while recovering while staying with David's parents and my parents coming to help.  I was not allowed to drive for three months, but gratefully I can now.
     David was able to come home for his two weeks of leave while I was recovering.  We were able to do some fun things, but also had to take it a bit easy.
     We finished the school year and then my father-in-law drove us up to my parents' home in Washington.  We enjoyed our time in the mountains and got to enjoy being with my family.  While we were there, we got to have a visit from my sister and her husband and my nephew.
     David and I also got to meet in Switzerland for a few days while my parents watched the kids.  It was wonderful to get to have time together and enjoy time exploring another country.
     Finally, we got orders to Hawaii.  My mom and I took the kids and flew to Honolulu.  We were met with leis and hugs by my sister-in-law, her kids, and her friend, as well as by two reps from the Navy.  I felt like a princess.  David and I are renting a  house on the eastern side of the island.  He still has a little longer on deployment to Africa, but my mom has been here to help me.  We decided to come over here early because school started at the end of July.  Everyone is in school.  Julia was able to qualify for their Junior Kindergarten program, which is for kids that have August to December birthdays and wouldn't usually be allowed to start school.
     Hopefully we will get our shipments of furniture soon and we welcome everyone to visit.  We have a large house with lots of room for guests.  Aloha!!!

I'm OK....

So, I'm OK.  I had a seizure.  I had influenza and a bacterial infection, but after several days in the hospital I am home and getting better.  The great news is that it looks like the seizure was from being so sick and not from MS, ADEM, or epilepsy.  More information will follow, but I am doing well now.

Heather's in the hospital again

     I happened to read an email from Becca, and it's not looking like good news.  Apparently Heather had a seizure last night after showing symptoms of ADEM (for more on ADEM, see here: http://en.wikipedia.org/wiki/Acute_disseminated_encephalomyelitis). Fortunately, both my parents were home, so while Mom called the paramedics, Dad was able to give her a blessing before the ambulance got there.  The good news is that she was responsive after coming out of the seizure.  She is currently having an MRI done, which should give us an idea of where to go from here.  If the MRI shows signs of lesions again, they expect to take her up to University Hospital in Salt Lake.
     I'm a little torn, because we thought she had this beat.  She had a routine MRI done within the last couple of months that showed no issues, so this came out of the blue.  Fortunately, we have some idea of a treatment plan that will work.  I'm very grateful that my parents have been there to help, and I've heard that Heather's parents will start driving down sometime later today, so Heather will have lots of support.
     As for me, I was scheduled to head home to Utah in two weeks for my 15 day R&R from Djibouti.  I'll have to talk with my Commanding Officer to find out whether moving my trip up is even an option, so we'll see.

David

Now Elli is on steroids...

So, Elliana is actually feeling a lot better.  The number of medicines that she is taking is down quite a bit and will probably keep on dropping.  She is in a walking cast and can finish with that on Tuesday.  She is already starting to walk around at home without it.  Elli's incision from her bone biopsy healed up very nicely, but she has had a fair amount of swelling and fluid in her knee, so the doctors started her on steroids.  The steroids should be very effective at treating her CRMO.  If they are, they may follow up with infusion medication that will help with pain for three to four months at a time.  The infusions can be done at the main campus of Primary Children's Hospital or at the Riverton campus.  The treatments take six hours each and are given every other day until three doses have been given.  All of this has been challenging, but Elliana is a trooper!  She has been so patient and handled her pain and challenges very well for a child her age.  She is an amazing kid!  Rebecca and Julia have also had to share me a lot with Elliana and they have actually done really well too.

David is also hitting seven months of being gone this week!  We got to see him on a couple of visits in November, but we are really looking forward to his two weeks home in April!  We can't wait to have him home for a little while and we are thrilled to be entering the last half of deployment!  He also has a 96-hour liberty this summer, so I am going to meet him in Switzerland for a fun vacation!  Two visits during this last half of deployment sure make things easier.

Finally, some answers...

     Well, I finally got the call from Elliana's doctor that I have been waiting for.  About ten days ago, Elliana had a second bone biopsy.  This one was done by an orthopedic surgeon and they took two or three tiny pieces of bone from her ankle.  Elli's pain has subsided a lot since then because she has been using crutches and a wheelchair.  The fact that she has not been putting much weight on her legs has helped her to have a lot less pain.  The doctor finally called with the results on Friday night.  He said that the biopsy came back with results that support the idea of CRMO (chronic recurrent multi-focal osteomylitis).  We have been waiting for this diagnosis because now that we have it they can start steroids or other treatments to help with pain and control the inflammation that is in her bones.  The condition mainly occurs in children and some teenagers.  Often people outgrow it!  It is an inflammatory condition that will get worse at times and then subside.  It can be very painful and Elli has had a few possible sights, namely her pelvis, a knee, and an ankle.  We have realized that some of the pain and difficulties Elliana has had when walking the last couple of years may actually have been caused by this condition.  It is a difficult condition to diagnose and occurs more often in girls, but with a 1 in a million rate.  We are waiting on results for genetic testing for dystonia.  There is a chance that she might not have dystonia after all.  Many of the symptoms that we have credited to dystonia might actually be caused by this inflammatory condition instead.  Honestly, I think she might have both, but even if she does, I think that her dystonia is not nearly as severe as I had thought before.  I think that the CRMO made everything much worse.  Hopefully we will get the results of the genetic testing within the next few weeks.  Thank goodness for modern medicine and wonderful doctors!
     Onto other events, I took a well-deserved night off while my in-laws watched the kids.  Caring for Elli lately has been pretty intense and it is hard having David gone still.  My in-laws help quite a bit, but I really needed some "me time".  I grabbed dinner at Texas Roadhouse, went shopping at the mall, and watched a movie at the theater.  I saw "Big Miracle" and it was quite good.  I would recommend it for older kids and adults, but not younger kids because it deals with Inuit hunting and more mature topics like that.  It tells the story of a whale family that was trapped by ice near Alaska during the 1980's.  I actually remember this happening and enjoyed learning more about the circumstances surrounding the rescue efforts.  It was so nice to have a break from parenting and just enjoy myself.  I am glad that my in-laws helped with the kids and let them have a fun pizza and movie night!

Crazy Hair Day at School

Rebecca got to do her own "wild" hair do for crazy hair day at school.  I think that this is her dream come true!

We Love Primary Children's Hospital

Well, we do love Primary Children's Hospital.  We have had lots of opportunities to see doctors there and we are so grateful to live so close to a wonderful hospital.  The doctors that we have seen have been very experienced.  The Child Life workers have been so helpful and the volunteers are great.  I also love how they decorate everything and make it so appealing.  While Elli was in the hospital they sometimes had live music, including a harpist, Disney songs with a plastic drum, and people playing a baby grand piano!

Today we went to visit Elli's rheumatologist.  Elliana is a little scared of this doctor for some reason.  I think all of the procedures in the hospital have made some medical experiences fairly scary.  Elliana started seeing this doctor in the hospital and has seen him once since.  The last time she saw him, she curled up in a ball on the exam table and hid.  This time, she started to hide a little, so the doctor called the Child Life specialist.  When the specialist came, Elli started to warm up.  Then, she provided Elli with a container of bubbles and Elli really started to feel better.  Soon, she was blowing bubbles all over the exam room.  Then, I suggested that she blow bubbles at the doctor!  Elliana started grinning and thought that was a great idea.  Apparently doctors aren't quite as scary if you can blow bubbles at them!!!!

Rebecca is doing well.  She and her friend Julia are working on a project about the solar system for fun!  They want to present it to their class in a week or two.  I am glad that she can appreciate science as much as she does.  She is also really improving on her violin.  It is fun to watch her starting to develop a talent and learning about how to read music.  She is always eager to play for an audience.

Julia gets to spend a bit of time with her great-grandparents.  They are nice enough to watch her and they love being entertained by her.  She always manages to find some kind of candy, nuts, or cookies to munch on while she is there!  She also likes preschool.  Several weeks ago they learned about penguins.  She said that her teacher said that Macaroni penguin eat macaroni!  She also said that her penguin was kissing Timmy's penguin "like they are married."  Oh boy, here we go again with little crushes!

The Last Two Weeks

I am so glad to hear from so many friends.  It is wonderful to feel connected again.  I really miss our wonderful friends in Maryland and Washington and our family everywhere.

The last two weeks have really been interesting.  Elliana pulled a hamstring muscle at the beginning of December.  She kept getting worse and her dystonia started acting up.  We went to the pediatrician and called the neurologist about the symptoms she was having a couple of times.  Finally, we had a mini miracle.  I had been trying to get Elliana in to see the neurologist, but they book up way in advance.  Then, after already trying to get an appointment earlier in the week, I called the clinic and they amazingly had had a cancellation and had a spot open for Elliana with the doctor that we had seen before.  The doctor saw her and thought about putting her in-patient, but decided to try a new medicine and see how she was after the holiday weekend.  Elliana only improved a little and was having leg pain and not walking right again.  So, on Tuesday the 17th, I drove her back to Primary Children's.  The neurologist did not have an appointment open, so we just showed up and asked to see the nurse.  The doctor was able to squeeze us in.  She was going to send us home again, when Elli insisted that she stay as a patient because she had been in a fair amount of pain.  The doctor decided to admit her.

Elliana and I stayed from Tuesday evening until Saturday afternoon!  Elliana had an MRI, x-rays, a bone biopsy, a spinal tap, a bone scan, and plenty of blood work.  She was a trooper!!!  She was sedated twice so that they could perform some of those procedures.  After all of the tests, it appears that Elliana has inflammation in her leg bone.  While we were in the hospital, there was some debate about whether the inflammation was from an infection or from an inflammatory condition.  She started antibiotics to be on the safe side, but now that more test results have come in, it looks like this is probably not due to infection.

We will follow-up with doctors on Tuesday, but it looks like she may have an inflammatory condition. This condition might actually explain a lot of the leg pain that Elliana has had even while she was being treated for her dystonia.  We may have blamed a lot of her leg pain on her dystonia, when she actually also had a bone condition!  Wow!  This child has had to deal with a lot for her age.

There were two good things that have come out of this hospital stay.  The first is that we may actually have a better idea of how to help Elliana feel better and walk better.  The second thing is that Primary Children's is a great hospital and they treated Elli very well.  She loved the play room that they have.  The volunteers in the playroom let her do crafts to her hearts content.  She got to paint and cover things with loads of glitter (especially pink and red).  She also got to order some of her favorite foods, like bacon, sodas, and Oreos!  The nurses were very nice and it is great to have so many medical minds working together to help Elli.

It was a great blessing to have my in-laws be able to take care of Becca and Julia while I was away.  It was wonderful not having to worry about how they were doing while Elli needed my full attention.

Hopefully, this week will be a little calmer!

It's About Time

Well, it is about time.  I have finally set up a blog.  It is one of those things that I have had on my mind for a long time but have never just jumped in and done it.  We have friends and family in so many places that it is way past time for us to stay connected, not to mention, I feel a little guilty that I get to keep up on what my friends are doing by viewing their blogs, but I haven't returned the favor.