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.)

Camping and Kayaking at Memphis Lake

Every fall we go with our friends to Memphis Lake State Recreation Area, just 45 minutes away, for a one-night campout.  They bring their kayaks and other friends from our church congregation come as well.  We had a fun time on the lake, and sitting around the campfire enjoying each others' company. 

At the shore of the lake with our campsites in the background.

This was the first year that Molly got to be in a kayak by herself out on the lake.  She did a great job and was able to control her kayak REALLY well!

Molly was a natural at kayaking, and had a blast!

I'm in the red kayak, just pulling away from shore, Molly is in the background in the yellow kayak, and Lexie rode with Justin.  Due to a very rocky shore and a rather full kayak, they almost capsized after they pushed off from shore! He and Lexie ended up a little wet.

Big Happenings for Justin at Creighton!

This week we went to a Creighton Alumni Donor Dinner.  We were a bit surprised to get invited to this fancy dinner since we aren't alumni or big donors to the College of Pharmacy, but we found out that Justin was chosen to receive a grant at this dinner, given by an alumnus.  It was a wonderful honor for Justin to be chosen for this grant, and we were grateful to attend this dinner.  Below are just a few pictures from the evening that were taken by Creighton's photographer.

Another bit of exciting news for Justin this week is that he turned in his application packet for tenure!  He's worked so hard the last 5 years, and he is so loved by everyone at Creighton, that I have no doubt he'll be awarded tenure next Spring!

The Dean introducing the donors of the grant.

Justin being presented with the grant from this very generous alumnus.

We were seated at the front center table of the ballroom with the Dean and the donor of the grant.

Justin with the grant donor and his wife, and the Dean of the College of Pharmacy, who selected Justin to receive this award.

So proud of my hubby! Way to go, Justin!

Lexie's Second Eye Surgery

Lexie had her second eye surgery this week, to remove another chalazion from her eyelid.  We first discovered this other chalazion just a week after her last surgery when 3 chalazions were removed.  This time she was at Boys Town instead of Children's, so we didn't have the pleasure of being so well-known by the staff there.  But it was a nice facility and Lexie did great.

Chalazion that needed to be removed.

Before surgery

After surgery.  She was happy to get a new stuffed penguin! Her eyelid bled a LOT more with this surgery than the last, but hopefully that means the doctor was aggressive and she won't have to deal with any more chalazions!

Our Little Readers

Our family really enjoys going to the Creighton library.  Justin gets great perks for being faculty there--like getting to check out books for about 6 months at a time with unlimited renewals!  Also, since Creighton students don't have much time for leisure reading, there's not much competition to check out popular books.  The girls love going up there to, and being able to have access to books that our city library doesn't have.  Oftentimes, we collect books and then spend a while reading there at the library.  We've become fond of this little nook by the children's section.

Fall Family Portraits

You might think I'm really on top of my fall family portraits, but these were actually LAST fall's family portraits!  I took these family pictures just before Annie had her spinal fusion.  And with the complications she developed afterwards, and this thing called life, I'm just now getting around to finishing them up.  Here are some of my favorites.

Justin's Turn for Surgery

Justin had surgery last Monday for a deviated septum and turbinate reduction.  I'll spare him, and you, the embarrassment of posting the pictures of him at the hospital before and after surgery.  The procedure was about an hour and a half, but he was in the recovery room for 3 hours.  This is the first surgery that Justin has ever had and we quickly learned that he does NOT tolerate anesthesia well at all.  They started telling him that it might be best for him to stay the night, but he just wanted to get home, so they eventually let him go.  Even before the surgery, while getting his IV, he commented to me that he has a new appreciation for everything Annie has had to go through.  (He really doesn't like needles or IVs!)

This past week has been very difficult for him since he has large splints sutured inside his nose.  This is creating a lot of pressure that is not able to be relieved.  And just like with the anesthesia, his stomach doesn't agree with the pain pills either.  Fortunately, now nearly a week later, he is starting to get a little more sleep at night.  This recovery has been much more difficult for him than we ever anticipated, which is making him reconsider the jaw surgery that has been recommended for him.

On Tuesday he'll get the splints removed and that should relieve all his pressure and hopefully allow him to breathe out of his nose, which was the goal of the procedure in the first place.  He hasn't been allowed to lift heavy objects--his ENT had no idea we have a 70 lb child dependent on us for transfers when he placed that restriction on Justin.  I've managed fine on my own all week--I'm used to doing half the lifting anyway, and Justin is gone several times a year for work and I manage fine, so that's nothing new.  But today my back has started hurting me.  Getting Annie in the shower and bathed is quite a project.  I can do it on my own just fine, but I think today it might have just been too much on my already stressed back.  So hopefully on Tuesday the doctor will say it's safe for Justin to start helping with the lifting!

All of this has me reconsidering our plans of installing a ceiling lift in Annie's bedroom and bathroom suite.  I've always felt confident lifting her, but today got me thinking that if I were to really hurt myself and become unable to lift Annie, we'd be in some serious trouble.  Also, since we lost our home health nurse and have been having troubles replacing her, I'm beginning to think that we might have access to more nurses if we can provide them with a ceiling lift instead of expecting them to be able to walk in and start lifting Annie.  Justin and I are used to it because we've been lifting her all her life and as she has gradually gotten bigger, we've gradually adapted too.  But this prolonged period of lifting has me thinking that we need to consider a ceiling lift sooner rather than later.

The only problem is that our medical supplier has seen Annie's room and has told us that they can't install a ceiling lift on her vaulted ceiling, especially with her ceiling fan where it is.  We can easily take out the ceiling fan, although we use it quite a bit and would hate to have to get rid of it, but we're not sure how to get around the vaulted ceiling issue.  We have other Aicardi friends that say it's possible, so we might just have to do some research.  But needless to say, I'll be grateful when Justin gets feeling better, can breathe better, and can start helping again with Annie's care!

Make-a-Wish Party

We went to a Make-a-Wish Family Party this weekend.  There were games and activities followed by a showing of Frozen, all at the Sumtur Amphitheater. 

We had fun dressing up for the photo booth!

Meeting the Storm Chasers mascot

Face painting

If only they could help out with her teeth...

Getting ready for Frozen to start!

Annie's CDC Appointment

I spent today at the hospital with Annie from 7:30am til 3:00pm for her CDC appointment.  That's when we meet with nearly all her specialist in just one day.  It makes for a long day, but it's better than making so many individual trips up to the hospital throughout the year.

We saw 11 specialists today including her neurologist, pulmonologist, developmental pediatrician, urologist, orthotist, physical therapist, occupational therapist, social worker, infectious disease doctor, dietician, and metabolic diseases doctor.  The specialists we don't get to see at CDC are her ophthalmologist, and gastroenterologist.

Earlier in July she had a half day of annual testing at the hospital in preparation for this CDC appointment. And so at this appointment we were able to get results from those tests.  I won't go in to detail about each visit with each specialist, but here are just a few highlights...

Annie had her annual urological testing including a renal sonogram and CMG test.  The cyst in her kidney is remaining unchanged, although it does show some calcification on it which can indicated the possibility of it developing into a tumor, so they'll continue to monitor that each year.  Her CMG test came back great with normal-for-her bladder pressures that are safe for her kidneys.  However, her urine had a high PH but no signs of infection, so we'll get that checked later, but they suspect that just a cause of her calcium supplement.

Annie had her annual Dexa bone scan which showed a slight increase in bone density from last year!  They were concerned about her osteoporosis last year and wanted to start her on IV infusions that would help strengthen her bones, but since she was scheduled for her spinal fusion, she wasn't able to have them.  Now, her bone density is still lower than it should be, but not so low that they are overly concerned.  Also, since there's a chance she will need more surgery on her spine next spring, we opted to again pass on IV treatment for osteoporosis.

Annie's back is continuing to be just fine, however, she still has 6 months of antibiotic treatment left.  But she is tolerating her treatment now much better than her IV treatment she had for the first 3 months.  So we just continue on and see what happens in February when she goes off the antibiotics.  If the infection returns, she will then need surgery to remove all the hardware from her back.

Our pulmonologist is getting us hooked up with a new C-PAP machine for Annie that has a variable pressure setting so when it senses Annie is obstructing, it will deliver a stronger blast to overcome it and then back down to her normal pressure setting.  I'm excited to try it on her and see how it improves her sleep, because she continues to have some breakthrough apnea on her current C-PAP machine.

Our occupational therapist again talked to us about getting a lift for Annie in our home to help with transfers.  Annie is 66 lbs now, but Justin and I are fully capable and comfortable lifting Annie ourselves.  We tried a hoyer lift for a week once and it was awful--huge and cumbersome.  So we explored ceiling lift options, but Annie's vaulted ceiling and ceiling fan create challenges there.  We should start looking at it more, but for now, we don't feel like it's necessary.  However, we just lost our home health nurse and are having a hard time finding a new one.  We think that maybe if we had a lift, we might open the doors to more nurses that could care for Annie.

Anyway, there's a lot more that was talked about with Annie's various specialists, but those are just some highlights.  We feel blessed that she's so happy now and generally in such good health.

Lexie's Turn for Surgery

 Early this summer we took Lexie to her eye doctor because a sty she had just wasn't getting better, despite our washes and warm compresses.  I expected the doctor to give us some drops to help it get better and send us on our way, but instead, he said that she didn't have a sty, but a chalazion, and would need surgery to remove it. 

A chalazion is like a sty, but a sty is just a build up of fluid that eventually drains on its own.  A chalazion develops in a similar way (Lexie apparently is prone to developing microscopic dandruff on her eyelashes), but a chalazion is a build up of puss instead of clear fluid and it won't go away with it being lanced and drained out.  She had to be able to keep her eye dry for a week after surgery so with swimming lessons and two summer vacations with lots of swimming planned, we had to post-pone surgery until August.

Lexie with her swollen left eyelid from the chalazion.

Lexie was super brave about having surgery.  But at first, she thought her surgery would be like Annie's spinal fusion.  She wanted to make sure that everyone would come visit her in the hospital and that we would decorate her hospital room.  Having a big sister like she does, that's the only experience with "surgery" that she has!

When we got to the hospital, a lot of people were surprised that I was there with a different patient, and they all asked about Annie.  Lexie was a pro at everything and did great through her short procedure!

Before surgery--she got her arm band, and her puppy Lucy got one too!  Lucy chose the bubble gum gas to go to sleep with, but Lexie chose strawberry.  She later said that Lucy made the better choice.

After surgery she did great!  She was happy to have earned her OWN hospital teddy bear.  (Annie's collection has outgrown her closet!)

Lexie had the eye patch on for just a few hours and then we took it off.  The doctor actually found 3 chalazions--one was removed from the outside of her lid (you can see the incision in the picture) and two were removed from the inside of her eyelid.  Now we need to make sure we are extra diligent with eye washes from now on to prevent this from happening again.  However, on a side note, since I'm so behind at typing up this post... we just recently discovered a lump on her eyelid that was there before surgery that we think the doctor must have missed.  We'll be taking her in soon to have it checked out, but we're suspecting that she'll need more surgery.

End-of-Summer Fun

 We've enjoyed some nice weather this summer before school started.  This was the first time we put Annie in her swing since her spinal fusion and we were surprised at how much taller she sits in it now!  Her head doesn't have much support anymore, but she didn't seem to mind and even thought it was pretty funny swinging with her head back.  She was all full of giggles and grins!  I guess we need to make more time for swinging before the snow comes! (I caught some giggles on video, but I'm having troubles uploading it now for some reason.) 

These girls are ready to get back to school!

I can't believe Annie is now in junior high.  This is her schedule that they gave her at registration earlier this week.  I think she's going to love having a change of scenery so often throughout the day!