Dem Dry Bones

A little snack before the news...

Every time we go to Lily's orthopedist, I see the skeleton sketch that is in the photo above and I start singing, "The HEEL bone's connected to the FOOT bone, the FOOT bone's connected to the LEG Bone.... Oh, hear the word of the Lord."
   
And every time, before I go into the office, I think to myself, "Whatever you do; do NOT look at that poster and start singing that song!" And then I do. Because I can't help myself. That song sticks in my head for days.  I even went home once and pulled up the lyrics on my computer to make sure I was singing it correctly.

***************

In the midst of my busy Monday (Halloween), I almost forgot that I had scheduled an appointment to take Lily to Primary Children's Hospital and meet with Dr. S, Lily's orthopedist.  Luckily, I remembered and off we sped (within the speed limit, of course) to the bones doc, "Dr. S."  

Dr. S has an amazing bedside manner with children.  He plays with her while he checks her bones and joints making sure nothing is atrophying or coming "unhinged."  Lily always giggles and babbles as if she is speaking in plain English to him. In return, he nods his head and convincingly looks concerned as she babbles away. I often think of these types of encounters that Lily has and about all the friends she has made in her short little life so far—most of them being adults and most of them with the first name being, "Doctor." 

We went to see Dr. S mainly to have him check out Lily's hips.  Lily's hips are a concern since she still isn't standing. I don't want her to have difficulties with them later because they weren't strong enough or the ligaments were too loose, making it difficult for her to walk. All these worries are constantly whirling in and out of my brain. Worry, worry, worry.  Then, just when I realize I have stopped worrying, I start worrying all over again.. 

The good news is that Lily is A-OKAY! Hips are IN CHECK!  All those hours in her Stander have paid off.  Everyday, fighting her to get her into her stander. We have worked hard on them thar' hips.  Dr. S went on to explain that if I can easily move her legs around in full circles and they naturally go into a frog position while she is lying on her back (which is her signature position), then the hips are strong and healthy.  Lily passed with flying colors. 

New Braces.
Just as I was getting to breathe in the relief about Lily's hips, Dr. S chimed in and said, "However, we're going to need to get her some different braces.  She is going to need to start sleeping in them as well."  Looks like the little Jump Starts (that are still too big for her) are now no longer enough for her current needs. She is going to be fitted with the new braces and have them molded up to her knees. Poor kid.

The main reason for his concern is that she still curls her toes A LOT!  Even when she is wearing hard soled shoes, she curls them inside the shoe.  The doc kept taking her and holding her up and then placing her on her feet.  Every time she would favor the tips of her toes rather than settling into her whole foot.  The braces will keep her little toes and arches from curling up teaching her to favor the entire sole of her foot, rather than curling them up like she is doing now.

So this means, one more thing for Lily to have to deal with.  One more appointment for me to make and to take her to. One more problem that we need to pay attention to, and one more thing that will worry me. That's okay, we signed up for this when we helped this precious child come into this world.  So what if her body isn't perfect.  She is.  

***************

On a lighter note, I always see this letter on the wall at the doctor's office that makes me laugh.  I took a picture so you could read it.  

This letter was written to one of the Orthopedic doctors that shares an office with Dr. S.  These doctors can really work wonders...miracles even.  It is a Thank You letter written to demonstrate the vast improvement of this child's foot over a period of 9 months.  Read the letter. It's darling.

Although an amazing medical miracle that should not be overlooked; what I find to be even more miraculous is that the letter was "written" by a one-year-old!  Wow. Superior penmanship, little Isaac!  You just need to work on your "S's."  Amazing that this child is reading and writing before he is even starting to walk! I bet for sure he still isn't potty trained though. Not much potential if that's the case.

Now, back to my song that is currently playing in my head..."Well, the toe bone's connected to the foot bone...."  

It's going to be a long day.

Brace Yourself

Brace yourself...for one cute girl! 

This week was "back to the grind" for Lily. Yesterday was the first of four appointments that she will have this week to help her to get up to snuff.

Lily met with her physical and occupational therapists who are provided through the Early Childhood Intervention program by the state of Utah. This low-cost program is for children up to the age of three. It is a fabulous, well-structured program for ALL children within the state that have all different kinds of special needs. Lily started when she was four-months-old and it has been wonderful to watch her progress.  I think she loves her PTs and OTs more than me because she thinks that every time they come over, they are coming to play with her!

When Lily turns three, she will transition into a state-run preschool that has children with and without special needs in her classroom.  I am so grateful for all the options that are provided for her particular needs.  Actually, we are all lucky to live in a country that provides these services to children with disabilities regardless of their background and financial status.

Lily practicing her standing skills while 
"playing" with her therapists.

In the photo above, Lily is standing with the help of her physical therapist, Susan, while she is working with another educational aid, Corinne. Both are just darling with her. I think Susan would take Lily home if I let her.

Lily loves iPads. We downloaded all sorts of apps that have a cause and effect reinforcement when she plays with them. She loves to push on the screen and have it respond, and it is great therapy for her in the process. Her favorites apps right now are Koi Pond and The Monster at the End of This Book.

Lily has a hard time with her grip. She holds on to most objects for just a few seconds and then becomes fatigued and lets go of the object. In the photo above, they are helping her to hold the ring and figure out how to place it over the pole. This is a very simple task for most two-year-olds, but it is very difficult for Lily. We're getting there!

Lily also goes to a private occupational and speech therapist twice a month along with various appointments with the Rehab and Nutrition clinic at Primary Children's Hospital about every three months. My days are busy!

Bamboo Arm Braces and Jump Start Shoe Inserts

Along with the Early Intervention team, Lily also has a private physical therapist, Mike Workman, of Professional Therapies.  Mike started coming weekly to our home to work with Lily when she was 11-months-old. I know for sure that Lily has a crush on him because she will do all sorts of tricks when he is in the room that she won't do with me!

The Bamboo Braces were invented by Mike. He designed the braces primarily for children with Cerebral Palsy (CP), Hemiplegia, Diplegia and Down Syndrome. They have a plastic stay that inserts into the neoprene and it keeps the child's arm from flexing back into a bent position. Although Lily doesn't have CP, she does have certain tendencies that lean in that direction. For instance, when Lily was younger, she would roll up into a ball with her knees and elbows bent as if ALWAYS in the fetal position. The braces prevented Lily from being able to get "stuck" into a bent position at her elbows. Instead, the braces enhanced her arm stability and encouraged her to reach out for a toy. *We only keep her in the braces for specific periods of time throughout the day and it doesn't cause her to be frustrated, so don't worry! 

Lily (11-months-old) with Mike.

Now that Lily is older, she is less likely to get "stuck" and ball up while on the floor. So the Bamboo Braces help to remind her to straighten out her arms and to pull herself up to play with toys at different levels rather than just at ground-level. (Which she prefers.) Selfishly, I love them because they keep her fingers out of her mouth and lessen the amount of drool that I am constantly having to clean up on and around her. Sometimes the hardest part of this whole disability is how much she drools, and drools, and drools. The muscles in her mouth and throat aren't completely developed causing her to not swallow as often as she should.  

A recent visit with Mike.  

(In case you're wondering, Mike is wearing knee pads to keep from 

getting rug burns while rolling around on the carpet when working with Lily.) 

The pink beauties below are her "Jump Starts" and they are inserted into her shoes.  Jump Starts are orthopedic foot braces that keep Lily's ankles from hyperextending and nearly touching the carpet. Ewww! Her bones are still really bendable because she hasn't built up enough strength and muscle in her lower body. These braces help her ankles stay steady and straight. Since she isn't walking, she mainly wears these when she is "doing time" in her Stander.

This is how the Jump Starts fit into her shoes.

Any shoe would work, but I usually have to pull out the insole.  For this reason, these Tom's were the easiest option for getting her braces and feet in and out of her shoes. Plus, I think of it as being Lily's little contribution in helping to save the world. (One shoe purchased, Tom's donates new shoes to a child in need.) 

Since the Jump Starts are plastic, Lily's feet sweat profusely. Yuck! So I put her in a sock that wicks the moisture away from her skin and keeps her foot from slipping around too much in the brace.  I'm not sure if it does any good, but I always try to put myself in Lily's place. I mean, I would want a wicking sock to keep my foot from being too hot and soggy! So I do it to make myself not feel so guilty for putting her into all these contraptions.

The braces help her arms to straighten out and  

stabilize her while "attempting" to crawl.

She loves showing off for the camera.

After all that hard work, she gets some 
time to play with her puzzles.

Life isn't so bad for this little flower girl. I caught her peeking

around the couch and it cracked me up because she is always

checking me out.  I'm flattered.