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School’s Out

Hard to believe that the school year is out for the summer.

Navy finished kindergarten and will be moving on to first grade in the fall. He had a great year and is making strides in reading.

Navy's First & Last Days of Kindie

Lily is done with fourth grade. This year had been a bit of a struggle because more of the work required Lily to stay organized to get her assignments and work turned in on time. Her teacher gave us some great advice so that won’t be an issue in fifth grade.

Lily's First & Last Days of 4th Grade

I can’t believe that we’ll be gearing up for First Grade and Fifth Grade in the fall. However, we still have summer!

So many fun and exciting things are going to be happening soon, and we’re going to enjoy it while we have a break from school!

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Lily’s LuLaRoe Leggings Heaven

One of the issues we deal with constantly is Lily’s tactile sensitivity. Some materials bother her. The cuts of some of her clothes, particularly pants, agitate her. Add to that, she is now in a walking boot.

Jeans don’t fit over her boot. Jeans don’t feel comfortable in her boot. She’s been wearing leggings as much as possible.

Thankfully, awesome LuLaRoe fashion consultant, Jennifer Langford, came to our rescue. She hooked Lily up with several pairs of the company’s buttery soft leggings.

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We also came home with two kid’s Azure skirts, two Gracie shirts, and an Adeline dress. I’m hoping that with the LuLaRoe leggings that Lily already has, this will making having to wear a walking boot less annoying for her.

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Jennifer is a LuLaRoe fashion retailer in New Haven, Indiana. She started her business in 2016. “I am happy to help you find the most comfortable, fun, and flattering clothes to make you feel fantastic.”

LuLaRoe Jennifer Langford

No Surgery!

We met with Dr. Wilhite from Peyton Manning Children’s Hospital. He evaluated the MRI results and examined Lily’s ankle.

He was pretty confident, looking at the grow plates in her ankle, that she will be able to avoid surgery!

The catch? She has to wear a walking boot for 6 weeks. She also is considered non-weight bearing and will be crutches or a walker.

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Lily will not be able to participate in gym or Girls on the Run until further notice. Learning the ins-and-outs of not being able to walk on her left foot will be an experience for all of us.

She will go back to see Dr. Wilhite at the end of April to have her ankle x-rayed and move forward with this process.

MRI Results

The MRI results are in!

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Lily’s ankle has an osteochondral defect (OCD) that is approximately 1 centimeter wide. It is almost half of the width of her ankle bone (talus).

Talking with her orthopedist, he feels that she would be better served by a pediatric orthopedic surgeon. Unfortunately, we don’t happen to have one in our area. She has been referred to a surgeon from Peyton Manning Children’s Hospital in Indianapolis.

Hoping that we are able to get an appointment with this new ortho Doctor in a few weeks to get this ankle of hers fix!

Hoping

Lily’s 1st MRI

Lily had the MRI done on her ankle today. There’s no spot in the baby book for this!

How do you explain what’s going to happen during an MRI to a 9-year-old?!

I found a really cool explanation online that said that magnets in this tube would make the water in her body all spin in the same direction to give a really good picture of her ankle. The cool part? She wouldn’t be able to feel it! Lily really seemed to like that.

The bad part? The machine would be super loud, and she’d have to wear headphones.

The hardest part for Lily was staying still. Her ADHD kicked in. She kept wanting to play with her silk blanket and move her hands. The tech only had to retake one of the pictures.

We have a follow-up with the orthopedist next week, so we’ll have the results and develop a treatment plan then. The wait sucks!

Even the Best Plans…

I had some really exciting plans for our blog, but those got put on hold with a recent trip to our pediatrician.

Lily has been having some pain in her ankle. Not enough for me to suspect something serious. She could run and play normally, the pain wasn’t severe and usually only after inactivity.

He ordered x-rays, just to be on the safe side. When he called the next day, he admitted his own shock in finding out that Lily had Osteochondritis dissecans.

Osteochondritis dissecans (os-tee-o-kon-DRY-tis DIS-uh-kanz) is a joint condition in which bone underneath the cartilage of a joint dies due to lack of blood flow. This bone and cartilage can then break loose, causing pain and possibly hinder joint motion. (Mayo Clinic.)

We were referred to an orthopedist who specialized in the foot and ankle. I was able to pick the same doctor that Navy saw when he broke his foot.

Next up, an MRI…

(Photos by Navy.)

Sleep Isn’t Overrated

I really thought that we were seeing some progress with Lily’s sleep.

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Lily’s sleep stats for November 18-22.

Last week, she was getting her 9 hours of sleep 28% (2 nights out of 7) or having uninterrupted sleep 14% (1 night out of 7).

This week, she got her 9 hours of sleep 28% (2 nights out of 7) and had uninterrupted sleep 0% (0 nights out of 7).

It seems that she gets the quality or the quantity of sleep, but not both. On the nights that she gets enough sleep, she tends to have several periods of being awake. On nights that her sleep is uninterrupted, she doesn’t seem to get enough.

ADHD is notorious for causing sleep problems.

I relayed this to the nurse today. She really felt that it was a question more for the doctor.

We had discussed trying low-dose Clonidine to help her sleep. Clonidine (Catapres) is a blood pressure medication, but treating sleep issues associated with ADHD is one for Clonidine’s off-label uses.

We are going to try this for a week and follow-up. I’m hopeful. Even if this doesn’t work or has minimal results, we’ve eliminated one more thing.

ADHD and Sleep
Clonidine for sleep disturbances associated with attention-deficit hyperactivity disorder: a systematic chart review of 62 cases.
Off-label use of clonidine