Ponca State Park

We went camping over Memorial Day weekend to Ponca State Park with our good friends the Packards and the Dinnwiddies. Here are some highlights from our trip.

We bought a cargo carrier in order to haul all of our camping supplies with us. It holds a surprisingly large amount of stuff!

But even with the cargo carrier full, there was barely room for the kids in the back!

We wouldn't travel long distances like this, but it worked just fine for the 2 hour drive.

Ponca State Park is absolutely gorgeous.  We were driving through prairie lands and then out of no where, we drive down a hill and into this gorgeous, lush, park.  It was hard to believe we were still in Nebraska.

These are our campsites.  Dinwiddies' trailer on the left, Packards' in the middle, and our new 20' x 10' tent and covered picnic table.

This tent was perfect for our needs.  Plenty of space to wheel Annie right in.  We put down foam tiles to protect the ground from her chair, and to make it more comfy to walk on.  It all worked fabulously. And with Annie on a double-high airbed, it wasn't too hard to care for her or lift her.

We had a double-high airbed too.  And since the tent has holes in the tent to allow for extension cords, we were able to use the electrical hookups to power the hanging light and Annie's feeding pump.

Molly and Lexie had a great time.

This is the back of our campsite.  It was so private and pretty.

Molly went kayaking on the backwaters of the Missouri River that first day.  It was a bit cold and windy for my liking so I was holding out for better weather, but Molly had fun.

Packards kayaking with Molly

Annie had a great time and did extremely well on our trip.  She loved being outside.

Gotta have a walking stick when camping.

We spent a lot of time at the archery range and had a lot of fun there.  Justin was a bit surprised at my skills, consistently hitting a 30 yard target.

Justin ventured out to another archery station in the woods.  They had foam bears, deer and other animals to hit.

Lexie had to take a shot.

Lexie got pretty good on her own.

But Molly still needed a bit of help.

These are the targets we were shooting at (the foam, not the people).

We enjoyed beautiful evenings around the campfire.

But Sunday morning was rainy until after lunch.  So Packards invited us to hang out with them in their trailer. Annie fell asleep in their lounge chair.

And later, Lexie took a nap there too.  We did puzzles and read books.

We went to a class on Outdoor Survival at the visitor center.  Here Sharon and Molly are learning how to use "logs" to build a shelter.

Sharon helped Lexie do her macrame.  They taught us macrame to make a keychain to carry with us, so we'll always have some rope on hand while hiking.

These three kayakers are our friends just coming in from a 5 mile run down the Missouri River.  The weather was too rainy and cold so Justin and I didn't get a chance, but next year we plan to do it.

Sunday was Annie's 13th Birthday! So we all celebrated together with a birthday cake I took.

She's a teenager!

Before heading home on Monday we went to this popular Oak tree that is supposedly over 300 years old.

Lexie and Jodi overlooking the Missouri River.

One Year Harpiversary

Last week marked one year since I started playing the harp.  I was able to celebrate the milestone by playing at a harp recital last Friday night.  Two harp teachers brought their students together to share what we've been working on.

Harp students who performed, surrounding my harp teacher in the front middle.

I performed "Upon the Willows" by Brook Boddie on a Lyon & Healy Prelude harp.  It had a beautiful tone and I loved playing on it. This song was meaningful for me to play because I first heard this song on YouTube performed by the composer before I had ever touched a harp.  I fell in love with this song, as well as the harp it was played on.  Hearing this song on the composer's harp was one factor that led me to purchase his same harp--the tone was so beautiful!  After starting lessons and buying my harp, I purchased my copy of "Upon the Willows" with the hope of playing it in a few years down the road, so I was very pleased to be able to learn this piece and share it at the recital last week with just a year of experience under my belt.

Lyon & Healy Prelude harp I performed on at the recital.

I wasn't able to have my recital performance recorded, but here's a recording I made of it just at home on my Thormahlen Serenade harp.

RSV

Annie has had a rather rough month since coming off her year-long treatment of antibiotics for her spinal fusion infection.  The GI issues have continued, although the infectious disease doctors believe it could take 3-4 weeks for her GI tract to get regulated again.  Our GI doctor suspects a possible ulcerative colitis flare-up and has suggested doing a colonoscopy for a definite diagnosis, but we requested waiting the 3-4 weeks as suggested by the ID doctor to see what happens naturally if we just give Annie some more time.

In the meantime, Annie developed a cold right after going off the antibiotics.  She missed several days of school, and then finally started feeling better enough to return to school for just 2 days before she became very ill with high fevers.  We got her in to the doctor who tested her for a UTI, strep throat, as well as the flu and other respiratory viruses.  We got results that night that she has RSV!

RSV is very dangerous in babies and the elderly as well as medically fragile people, like Annie.  Most Aicardi girls who develop RSV are hospitalized and often develop pneumonia.  RSV can last 2 weeks or more, but after just one week of Annie having RSV, we were concerned that her high fevers were persisting, and that she was becoming more lethargic.  Her seizures also become much worse when she's ill.  Although she's never had pneumonia, we began to be worried that she might be developing it, despite all the suctioning we've been doing.  So we took her back to the doctor for a chest x-ray, and fortunately, her O2 sats were at 100%, she sounded clear, and her chest x-ray was clear! Although Annie's cough hasn't sounded very productive lately, it must still be strong enough to be protecting her lungs, which we are extremely grateful for.

Annie is still sick with RSV, but her fevers are not quite as high as they originally were and her congestion seems to have improved just slightly.  She hasn't quite turned the corner yet, but I think she's starting to peek around that corner.  As for her GI issues, they have maybe improved just slightly, but it's hard to say.  Some days we feel optimistic and other days we strongly believe she has a UC flare-up.  However, now that she has RSV, she won't be allowed general anesthesia for the colonoscopy for 4-6 weeks after she's recovered from RSV.  So hopefully she'll turn the corner on the RSV soon and the GI issues will possibly resolve themselves with a little more time.

Update on Annie's Spinal Fusion Infection Treatment

It's now been just over a year since Annie had her big spinal fusion surgery.  And it's been almost a year since she was diagnosed with a very serious infection because of her back surgery.  She had a 3 month course of IV antibiotics, followed by a 9 month course of oral antibiotics to try to eradicate the infection. We are finally nearing the end of this year-long treatment--Annie has about 2 more weeks to go on her antibiotic treatment.

We have very mixed feelings about having her off the antibiotics.  She has been very healthy the past year being on the antibiotics--not even a single UTI, of course. But we do look forward to administering one less drug, and doing away with some of the negative side effects.  However, we are very nervous about her recurrent UTIs returning, since any kind of bacteria she might develop in her body will now have the potential to spread to the metal rods in her back and cause another infection.  Once a child has their rods infected, it is highly likely that they will become re-infected again at a later date.  We pray this won't be the case for Annie, but we also keep that likelihood in the back of our minds.

If Annie's rods were to become infected again, her orthopedist would have to perform another major surgery to remove all the rods and hardware from her back.  This wouldn't affect her spine or scoliosis, because by now, her spine has fused together into a solid piece.  However, surgery to remove the hardware would be as major of a surgery as getting the hardware placed.  It's definitely something we might be facing, and we never know when.  Some infections recur after a year or after 5 years. There's no point in time that she will ever be considered in the clear.

The last couple weeks have been a little rough as Annie has developed worsening diarrhea.  Our first thought of course, was that she must finally have c-diff after such a long treatment on antibiotics.  However, her c-diff test ended up being negative which is a relief, but now we don't know what's causing the problem.  She was diagnosed with ulcerative colitis 4 years ago, so she might possibly have a flare-up, although her colitis has been well controlled, remaining in remission for the last 3 years.  It's also possible she just has some kind of viral bug that might be going around.  She's having more tests done next week, and we'll be meeting with her GI to try to get more answers.  Her antibiotics surely aren't helping the issue, but we don't think they are the cause either, since it's been almost a year now on them without any chronic diarrhea issues.

But otherwise, Annie continues to be happy and healthy.  We have a lot of potential changes coming soon having her off the antibiotics, but like always, we'll just take one day at a time and be grateful she's done as well as she has so far!

Christmas Break 2014

 We had a lot of fun over Christmas break this year.  We decided to make it more of a stay-cation than in years past, so we found a lot of new things to check out in Omaha.  Some were great, and others not so much, but it was fun to have some adventures the past couple weeks.  Here are just a few highlights.

Justin's mom sent us a beautiful 1000 piece puzzle.  We all helped out on various parts of it, but it was the HARDEST puzzle we've ever done!  There were TONS of empty black spaces and not much variety in colors.  We kept it on this white board with three large cookies sheets to hold all the pieces so we could work on it throughout the day or in the evenings while watching Christmas shows together.

It took over 2 weeks, working a couple hours every day, but we finished!  Justin and Molly did most of the work.  Then Lexie accidentally destroyed it.  I guess we get to do it again next year!

Before Christmas we went to Boys Town to see their Christmas stamp display and several nativities around the campus.  It was rather underwhelming.  So the next day we looked forward to seeing a light projection show on some new apartment buildings in midtown Omaha.  Again, it wasn't at all what we were expecting and we were again underwhelmed.  We've been trying to find some fun Christmas things around Omaha to make part of our traditions, but we won't be doing those two things again.

While we were in midtown, we decided to go see the decorated window displays we've heard advertised.  Again, I was expecting something elaborate like the ZCMI window displays in Salt Lake City that I grew up seeing.  The window displays here weren't nearly as exciting or elaborate, but it was fun to see some of them.  We might have enjoyed it more if it hadn't been snowing.

The day before Christmas Eve we decided to take the girls swimming since they don't get to do that much in the winter.  It turned out to be a blast and we had the whole pool to ourselves!  We very well might make swimming a new Christmas tradition!

 

Of course, Christmas Eve was full of our regular traditions and we all had a wonderful time together as a family.

 The girls had a great time, and Annie was even full of giggles too.

 Lexie even got to act as our photographer for some shots.  She's a natural!

Justin always enjoys building things for the girls for Christmas.  This year he made Lexie a jewelry box and Molly a bed for her American girl doll.  I sewed the sheet set, quilt and pillow.  I thought Molly was going to hyperventilate when she opened it, she was so excited!

 During the week after Christmas, we all went to see Big Hero 6 which was a fantastic movie.  And the girls had a fun time seeing a movie in the remodeled theater with huge reclining lazy boy armchairs! Unfortunately, I didn't get a picture of them lounging in the movie!

Later that week we went to the Joslyn Art Museum since we've lived here almost 6 years and have never been.  Their permanent collection got a little long for the girls, but they had a rotating exhibit on graphic novels and comic books, in which they showcased several that Molly reads.  It was interesting to see how they are designed.  Then we went to the kids' art area and spent a long time there playing.

Lexie did a great job drawing some still-life...

 Justin and Lexie built a pixel picture, and the girls had fun "painting" on a digital screen.

 They even had pots you could decorate and draw on.

Near the end of our break, we needed to make a trip to Scheel's so we couldn't resist riding the ferris wheel while there.

 We are so grateful for this holiday season to remember the Savior and His power in our lives.  We enjoyed some much-needed family time and feel so blessed to have another Christmas holiday all together.

Make-a-Wish Radio-thon

Make-a-Wish invited us to participate in their annual radio-thon held today.  Due to the timing, Annie and I weren't able to go since she was just getting out of school, so Justin did the interview by himself.  They also invited our wish granter, Bridgette, to join him as well.

Justin did a great job and it was exciting to hear him talking about Annie on the radio! The rest of us were all at home listening live, and Annie got a huge smile on her face when she heard them talking about her on the radio!

Here's the interview if you missed it live:

Fall Happenings

 The weather turned cold very quickly this fall, so you can often find us cuddled up under blankets after dinner each night!

In October we joined our friends for a night at a State Park.  Annie is too big to camp in our little tent now, so we've been considering the "cabin" tents to possibly make camping with Annie more feasible.  It was too late this year to stay over night (and far too cold) but we had fun having a BBQ and enjoying a campfire with marshmallows, s'mores, and hot chocolate. 

We went on a little nature trail along the river and enjoyed all the trees.

It was a beautiful evening...

...but quickly turned cold.

Halloween was fun but cold too.  It was 35 degrees when I took the younger girls trick-or-treating.  Justin and Annie stayed home to hand out candy.

Justin is always such a good dad to help the girls carve a pumpkin.

We adapted costumes to fit over parkas.  It was SO cold, but no wind, thankfully.  We stayed out for over 2 hours! (Lexie was a cowgirl, and Molly was a chef.)

For Thanksgiving we stayed home and had a relaxing day with just our little family of 5.  We had fun cooking together while watching the parade on TV.  The girls helped prepare the food too.

Molly helped make an apple pie with Justin.

Lexie helped peel about 10 lbs of potatoes, and then helped taste them along the way.

Ready to eat.

The Saturday after Thanksgiving was 72 degrees!! It was unreal, so we spent some time working in the garage, without coats!  What a beautiful day after already having days with below 0 windchills!

Justin burned out the motor on his little table saw earlier in the month.  I guess building a huge captains bed and a whole office full of cabinetry will do that to a little saw.  So we had to move things around in the garage to find a place for his new contractor-grade table saw that he ordered.  Hopefully this new one will last more than 2 years! Christmas is coming a few weeks early for Justin!

Harp Ensemble at the Children's Hospital

I had the fantastic opportunity to join 11 other harpists to play in the lobby of the Children's Hospital this past week.  We spent the morning in this small classroom rehearsing from 8:30am til 11:00am, since this was the first time we could manage to get everyone all together for rehearsals.  I had only rehearsed with 2-3 other harpists previously, so it was wonderful to hear us all together finally! 

Rehearsal in a tiny classroom.

After lunch, we moved all our harps and equipment up to the lobby.  It took about 45 minutes to get moved and set up and re-tuned.  Pedal harps weigh about 90 lbs, and the smaller lever harps weigh 20-40 lbs, so it was no small task moving all those harps! We started playing in the lobby around 1:00pm.  We calculated that we had nearly 500 strings among all the harps there, each one needing to be tuned!  We also calculated that we had 93 years of harp experience combined in our group!  Forty-four of those years go to our teacher, Mary!

Getting tuned and set up.

This event was advertised around the hospital, however, no many patients were able to make it to the lobby to hear us.  But the hospital filmed us so they can play our performance over their closed-circuit TV station into patient rooms several times this holiday season.  (I'll think we'll be receiving a DVD copy of that recording as well, so maybe I can share some of our music with you later.)  We did have a decent sized crowd in the lobby to hear us.  Although most of those in attendance were family members and friends, or hospital staff that stopped by to listen.

Justin said it was SO satisfying to finally hear all the different parts together!  For 6 months he has listened to me practice my own parts, totally unaware of how the final songs would sound. He was also my photographer for the day. Justin is so supportive of my music and hobbies!

All set up and ready to play

We had 3 pedal harpists and 9 lever harpists.

We played mostly Christmas songs such as Jingle Bells, Up On the Rooftop, Silent Night, Deck the Halls, etc.  We also played some songs written specifically for harp such as Harvest Hornpipe and Harp's Delight.  Then we also played the classical Cannon in D, and a smaller trio did a First Noel/Cannon in D mashup!  It was awesome!  And how could we perform at the Children's Hospital without some music from Frozen!? Mary wrote an amazing arrangement for us of Let it Go which was a lot of fun.

This is my fabulous harp teacher, Mary.  She is the harpist for the Omaha Symphony and often plays with the Lincoln Symphony as well. She is fantastic, and I know I couldn't have found a better, more qualified teacher!

Be Still, My Soul

It's been 7 months now since I first started to learn to play the harp.  Here's an arrangement of Be Still, My Soul  by Julie M. Staples that I've been working on.  I'm also still experimenting with doing video on my Canon 5D Mark II.  So this video isn't perfect, but at least it's much better than my last recording!

Reverie on Harp

I'm still loving my harp lessons and the new harp friends that I've made.  This new hobby is so fun and relaxing, and I love spending time practicing. I'm currently rehearsing music for a Christmas harp ensemble I'm performing in at the Children's Hospital in December. I'm also working on a fun competition piece for a festival next summer, and trying to polish a hymn arrangement of Be Still My Soul that hopefully I'll be able to share soon.  I also just finished writing my own arrangement of Still, Still, Still since I couldn't seem to find a harp solo arrangement of that beautiful Christmas song. 

This video below is a song called Reverie by McDonald & Wood. I learned this song last June, and forgot that I hadn't recorded it as my teacher had suggested, so I just got around to it last night.  It's been a couple months since I've played it, so it's not quite as smooth as it used to be, but it's a fun and simple piece to play.  This is also the first time I've tried recording video on my Canon 5D Mark II SLR camera.  I learned a few things, so hopefully future videos from my Mark II will be better! (You can click on the bottom right corner of the video to make it bigger.)