JOY in the moment!

As of tomorrow, December will be a very busy month for us.

Ummm, in addition to Christmas.

At 8 a.m. Kasidi is scheduled for injections.  This is slightly different from the prior injections given in June and September.

Like before, this should temporarily relieve the muscle spasticity in her hamstrings and heel cords.  The procedure in September did not work, so we are stepping it up a notch.  If we don't see results, it will lend to the notion that her spinal cord is tethered again.

In any case, 7 to 10 days after the injections she will begin four weeks of serial casting, which she handles like a pro.

We are praying there is no tether.

We are praying no surgery is necessary yet.

We are thankful for less invasive measures for now.

Within the next 8 weeks Kasidi will see the neurologist, the neurosurgeon, the orthotist and the orthopedic surgeon.

She will greet each with a high-five, walk for them, kick a ball for them, roll her eyes at them, and probably ask a few questions of them.

And she will astound them all!

She handles life with such grace and JOY!

She inspires me to do the same.

In a Word ~ PRAISE!

As I posted on Facebook, we had two huge doctor's appointments today.  Their magnitude didn't really strike me until I was packing the diaper bag last night.  At that time I realized that Khloie would finally see a cardiologist and we would get answers as to the condition of her heart.  Khloie's file indicated diagnoses of ASD and CHD, and although we had images and reports, they were a year old.  Today we would find out...

...that Khloie's heart is perfect!!!!  There is NO DEFECT!!!   Dr. P wants to see her again in 2 years, at which time he will release her for all normal activities.  Today he cleared her for eye surgery.  Father in Heaven, we praise YOU!

Then we hurried across town for Kasidi's big appointment with her pediatric rehabilitation doc.  She was scheduled for her first injection of botox to relax and release her hamstring and calf muscles.  Since it is done under sedation it was going to be a pretty big deal.  Dr. W observed Kasidi walk, and although she has made huge progress, he wants the very best for her...so he changed the treatment plan. 
 He made two recommendations, and we opted for the one that would give her the most opportunity for correct mobility.  Kasidi walks in a 'crouched' position, and the concern is that her brain doesn't send a message to her muscles, due to the interruption in her spine, so as her frame continues to grow, her muscles will not.  Eventually, she will need a rhizotomy, a neurosurgery to destroy problematic nerve roots in her spine.  The first surgery is usually between the ages of 4 and 8, but the doctor hopes to delay it as long as possible.  So he has prescribed the injections to relax the muscles, and then she will complete a series of castings to help correct her ankle issues, beginning as soon as possible.  She will wear 3 to 4 casts, changed weekly until the series is complete.  And this will be done every six months.  This is one of the things I love about this doctor ~ he doesn't just want progress; he wants the absolute BEST for his patients!
Kasidi handled the injections and the sedation very well, and tomorrow we will know when the castings start.  Dr. W has noted just how determined Miss Spunk is.  

We stand in awe of our awesome God, and He deserves all the glory!!!

The Princess is Back!

This is a welcome sight! We had another rough night. Kasidi wanted all of Daddy's 6'2" body in the crib ... and so that's what happened. Around 1 a.m. neuro came in and decided she needed to recoup at home, so they ordered her catheter out at 6 am and after she passes 3 void tests, she gets discharged.

As of this post we are 2 down...

24 hours ago she decided Daddy is a rock star and Mama's presence wasn't necessary.

Fortunately, she's leveling out today :)
I'm hopeful the next post will be from home...

Rest!

I'm so happy to report that Kasidi slept the night away under sedation.

The neuro team says she will indeed need to remain sedated through Saturday.

Her incision looks great!

Please continue to pray, as this spunky little girl is fighting sedation this morning. We can still raise the dosage if needed, but we have to monitor her heart rate and breathing closely.

She is such a trooper and such a fighter!

I knew I couldn't handle this alone anymore so Clayton joined me yesterday afternoon. He will go back home today but it should be a quiet day for Baby Joy. Tomorrow he will bring the Krew to visit. We praise the Lord for everyone lifting our Joy up and the words of support and encouragement.

It's the big little things :)
but God has surely listened and heard my voice in prayer. Praise be to God, who has not rejected my prayer or withheld his love from me! Psalm 66:19-20

Surgery...

Kasidi's neurosurgeon called yesterday and said he would put her on his surgical schedule next week! Wednesday, the 20th, to be exact.

So we had to decide if we could make that work...or wait till the end of August.

Even though we are less than 2 weeks from starting the 6-week corn harvest and 1.5 weeks from Falls Creek, we decided it would be best for Kasidi if we go ahead.

After all, if the tether is causing the spasticity in her legs and keeping her from walking, we don't want to put it off.

So the general plan is to do lab work and eval on Tuesday and report for surgery on Wednesday. Dr. M will untether her lumbar spine. She will spend 4-6 days in the hospital, depending on a lot of things.

My prayer is the next time we take a candid shot like this, Kasidi will be standing...


I will need some reading material, so please give me your book recommendations!

Thank You, Lord, for your amazing plans for Kasidi Joy!

Guess Who...

...is potty trained?
Yep, 100% good to go!

Way to go, Baby Joy! I love being able to report this when we visit the neurosurgeon today...

A Girl and Her Wheels

Oh my word! Kasidi was measured today for her very own AmTryke!

We get to borrow this one for a week or so.

This special trike will help strengthen her leg muscles. Thank you, Ambucs!

We will know the date of her MRI and spine x-ray next week.
Meanwhile, you'd better stay off the sidewalk cuz we're coming through!!!