Spring Happenings

Molly is in the High-Ability Learner program at school and each year they choose a topic to research and present on.  Molly chose Aicardi Sydrome and the brain.  This is the poster and brain model she made all by herself.

Molly was also a winner in the city's Arbor Day poster contest.

Molly's Arbor Day poster

Annie was happy staying up late with Dad after a church activity.

We've seen a lot of double rainbows from our back deck lately.  So beautiful!

There's been a lot happening in Lexie's mouth lately.

My kids always seem to think they have to leave notes for the tooth fairy along with their teeth.

Justin and Molly ready for the Daddy-Daughter dance at church.

Annie has been so happy and healthy lately!  Yay!

Girls Camp

Justin was determined to take Annie to our church's girls camp this year.  She was old enough to go last year, but the camp just wasn't accessible enough for her to go.  This year the girls were staying in cabins near a lodge, so it worked out great for Justin to take Annie and be able to stay in a room in the lodge with her.  She ended up having a great time and even made some new friends.

Since it was just Annie and Justin going to camp, Annie got to ride up front in her wheelchair.

Annie's friends were so nice to help do Annie's hair cute, since that's not really a strength for Justin.

Justin went to pick up Annie from an activity at the lodge, only to find her missing! He soon discovered that this group of girls had taken Annie in the kitchen with them so she could help them make cookies.  What's even more kind and touching, is that none of these girls are from Annie's church congregation.  I don't know who they are, but they were SO kind to include Annie.  And yes, that tub is full of cookie dough!

Meanwhile, back at home, I had a lot of fun with Molly and Lexie for 4 days.  But first, we had to clean out Dad's car before I could stand to drive it around.

We went miniature golfing and the girls were excited to see this Gateway Arch since they rode to the top of it a few years ago.

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!