Back in Business

Yesterday Lily got her final cast off.  As you can see she has been anticipating this for a while.  We are back about the business of walking in a most serious way.  Consider that her right leg was in a cast for 10 weeks and her left one was in a cast for 12 weeks and had only been free for 2 hours when I shot this video.  It is pretty evident, even with out words, that "I can't do it." is not part of Lily-an.

Leaps and Bounds

Well she isn't quite leaping and bounding yet, but she sure is trying!!  After an incredible summer of forward movement and improvement Lily hit a bit of a setback this fall when her orthopedic doctor decided her feet were reverting too severely to their club foot positioning and she would need to go through re-casting of her feet and possibly undergo surgery if the casting didn't do what he wanted.  But praise God, the casting has worked and there is no need for surgery!!!  And we have 4 days to go to get her last cast off.  She got her right leg cast off two weeks ago since her right foot is being more cooperative than the left ;-)

As you can see the casts have not hindered her in the least.  The worst part has been 12 weeks with out a bath.  Sponge baths just aren't the same.  I think Lily has a big old fashioned bubble bath on the schedule for Tuesday night!!

Lily-an Update

Sorry for the absence.  Here are a few videos on Lily's progress.  She is doing great and is moving along - literally.

We have an appointment with the ortho doctor later this week to discuss her hips and how soon we may be looking at surgery.  Keep Lily in your prayers.  We dread the thought of her having to go through surgery like that, but we know it may have to be done sooner rather than later.

Our other Blog Lives

It occurred to me that most of you are not aware of the other blogs/websites that Mike and I have.  Mostly our non-Lily centered lives are chronicled there - yes we do have an existence outside of our daughter:-)

http://purplepincushion.wordpress.com/home-2/

http://olskoolclassics.com/

So Cute I Could Die

Yeah, she's cute isn't she?  Really cute!  Adorable, precious, beautiful, blah, blah, blah.  Don't fall for it.

Let me ask you this.  Have you ever seen a crocodile do the death roll?  You know, when they grab their helpless prey and barrel roll them under water until they die.  Have you ever walked a crocodile through Walmart?  While they are doing the death roll?  What?!  That only happens on reality television you say?

I am here to tell you that crocodiles disguised as cute, adorable toddlers are real!!!  I can only say this with the absolute faith and certainty of one who has lived to tell the tale.  This epidemic is sadly under reported and believed to be only mythical because of the incredible skill the crocodile has at transforming into an utterly heart melting sweetie pie in the blink of an eye (see picture above).

So here is me in Walmart today.  Starts out great.  4 year old is riding in the cart seat all strapped in and smiling.  For a whole 38.2 seconds.  Then the wiggling starts.  Next the flinging happily from side to side.  Finally the vice grip pull on my arms that nearly lifts the shopping cart off the ground accompanied by the warning growl.

Out of the cart and onto my hip.  Again, this lasts about 38.2 seconds.  For some reason that is a magical number for crocodile children.  Then she starts to show her true colors.  Spinning, rolling, flailing, swinging, kicking, flinging, flapping, grabbing, pulling, pushing, pinching.  All the while emitting the gleeful giggle of destruction.

Her favorite maneuver?  The Chinese splits in mid air while I'm walking down an aisle.  This crocodile has REALLY long legs.  I have never been so thankful that a store was in the middle of a remodeling project.  It was already a mess so they probably didn't notice a couple of aisles cleared by a crocodile, right?

Now I am pretty certain that this is the point at which I may end up on "People of Walmart".  In order to keep the crocodile from destroying the whole store and finish grabbing all of the items I so deludedly thought I needed, I pulled the potato sack trick on the crazy little she croc.  This she croc has a special fondness for being upside down and it has a nearly mesmerizing effect, nearly .  So over my shoulder she went, hanging down my back by her knees.  And that is how we finished our shopping.  Thankfully she was not in a biting mood.

In all seriousness, I discovered what triggered the "crocodile" behavior when we got to the check out. I set her down on her feet just in front of the cart because we were waiting for people in front of us.  Now mind you, we have been working very aggressively with her in physical therapy to encourage walking.  The minute her feet hit the ground she grabbed the shopping cart and started stepping and pushing the cart!  She was a wobbly mess, but she knew for certain what she wanted to do and nothing was going to stop her.  She nearly ran over the lady in front of us - lol!

Just remember, the next time you see a mother apparently losing her mind in the grocery store or department store chances are she has a crocodile child.  Have mercy on her and offer to push her cart or something, for crying out loud!  

If you still don't believe in the existence of crocodile children because your own children are perfectly submissive and obedient at all times then I am pretty sure that simply proves the existence of aliens:-)

My Father's Hands

I am so blessed to be one with this man who has grown, over the past 20+ year, into a tremendous man of God.  A man who is able to translate God's love through his hands to our sweet daughter.  Thank you, Mike, for allowing God to show you how to be the best father you can be.  We love you!!!  Happy Father's Day:-)

So the Crocodile Tamer is 4 years old today.  She is growing into a beautiful young lady filled to the brim with joy.  Words can not express how proud I am of this tenacious live wire who is my daughter.  Happy Birthday Lily-an!

Just had to share. I follow a blog called Mommies of Miracles. They are dedicated to supporting moms/families of special needs children. Every Monday they share a rare disorder and a story of a particular family and how they came to diagnosis along with treatments and therapies that have been helpful.

 I submitted our story of Lily's diagnosis of ESES a few months ago. I had the pleasant surprise of seeing Lily's beaming smile on their Facebook update this afternoon.

 Check out Mommies of Miracles for the whole story!

I pray that this can reach even one other mom who is desperately seeking these exact pieces of information to help her sweet child.

Super Girl

Miss Lily has had an awesome couple of weeks! She is doing phenomenal in therapy and in school. This past week she got another tool to help her move along even faster. She got her Super Girl suit :-) Actually it is called a SPIO suit. Spio stands for Stabilizing Pressure Input Orthosis. For those of you ladies who have had the opportunity to wear Spanks you will know exactly what this suit is like. Also very similar to the compression suits that runners wear. Basically Lily has very long, stretched out muscles, tendons, and ligaments. When she first came to us she also had very low tone, no actual muscle at all. While she has developed an incredible amount of muscle in the past two years she still has a very difficult time managing that muscle. This suit gives her the deep pressure input she needs for her brain to get the messages on how to move her body effectively. It also provides support for that movement without weakening the existing muscles and helps shorten and tighten the muscles she does have. She will be wearing this suit all day, every day. It is breathable and dry wicking just like the fancy athletic wear so she won't roast in it. Right now she tolerates it for 1/2 to 3/4 of the day and it is very easy to see the improvement in her movements, posture, and motor control.

Workout!

I don't think I need to add anything, the video says it all:-) Go, Lily, go!!

Miss Lily

Just thought I would post a quick update on Miss Lily. Biggest news around here is that she got her PICC line removed on Thursday after 5 very long weeks!!! All three of us were quite happy to have that ordeal over with. Her finger is looking good so far so we are hopeful that the infection has been eliminated.
As you can see from the picture Lily is rapidly losing her "baby" look:-) She is rapidly losing the baby attitude as well and is adopting some new sassy, independent opinions:-/ The PICC line pushed her patience level off the cliff. By the last week she was consistently trying to bite my arm when it was time for me to administer her IV. We had several conversations about that which usually ended with her growling at me:-)
We go next week for a follow up with ortho to find out if Lily is going to need surgery on her hips. We are hoping and praying for either another "let's wait a little longer" or an even better "she looks great, we don't need to do surgery". Lily has been on her feet a lot since the last check up and we are hoping that her hips are correcting with the weight bearing, that is the doctors hope too.
We will let you know what we find out! Pray for Lily and the doctor that the decision is clear and obvious!

Jennifer

Walk by Faith

"Now faith is being sure of that what we hope for and certain of what we do not see. This is what the ancients were commended for." Hebrews 11:1,2

"We live by faith, not by sight." 2 Corinthians 5:7

By faith we have believed that one day Lily would walk. To be on the very edge of seeing the past unknowable is humbling beyond belief. We serve an awesome and mighty God. He has done and is doing this work in her life. All the glory goes to God.

Thank you, God, for letting us have a part in this amazing journey.

Frogger in Motion

I think the video says it all. From never even thinking to venture off of her play mat to long distance travel in a matter of days. Obviously you can see what motivates her - she realized she can take herself to where the food is served, whenever she wants. I am dreading the day she figures out where the pantry is!
As you can see the PICC line is not hindering her at all.

Adventures in Hospital Land

In the past 6 weeks we have gone through 3 rounds of antibiotics, taken one ride in the ambulance, spent two nights in the hospital, and learned how to administer IV drugs though a picc line. All for one swollen finger, one seizure, and one violent bout of the stomach flu.

So Lily developed some weird infection in her finger (probably from her own mouth). 3 rounds of antibiotic later and nothing is working. Infection spread to the bone. We just got home today from 2 nights in the hospital trying to figure out what to do. Ended up with a PICC Line, which is basically an IV catheter that stays in all the time and it runs directly to the heart.

Its sounds, icky, freaky, and super serious, and I guess it is, but Lily can do all of her normal daily activities. It allows us to give her IV antibiotics at home and she doesn't have to get stuck with a needle over and over again. And a way better option than having to stay in the hospital for 4 weeks which would have been the alternative. Yes, the picc line is in for 4 weeks. Three, one hour treatments per day.

In between rounds of antibiotics for the finger Lily had another seizure that sent us to the hospital by ambulance. On the way to the hospital we discovered the trigger for her seizure when she projectile vomited at her favorite EMT. Yes, the stomach flu can trigger seizures. After she threw up she spiked a 104 degree temp. In children like Lily who have seizure disorders their systems are very sensitive. Viruses like colds and flu can easily send them into a seizure. Again, this sounds serious but it is really very common for kids like Lily. She just presents her symptoms backwards. Most kids spike a fever and the rest follows. Lily seizes and then reveals the fever/cold/flu. These are considered febrile (fever induced) seizures and are unrelated to her sleep seizures.

I am pretty sure I have left out a ton of stuff about the last 6 weeks, but my brain is complete and utter mush right now. Anyway, Lily is doing awesome considering all the chaos. She is one amazing little girl.

A Mighty Power!

How many times can one kid blast off into the outer space of accomplishments?! I asked Mike if it was my imagination, yesterday morning, or were Lily's pants all getting too short again?
Well she had a follow up appointment at Children's and guess what? The child has grown 2" in the last 6 weeks or so since she was last measured! She has leaped into the 41st percentile for height. Pretty amazing considering that when she came home with us 2 1/2 years ago she wasn't even on the charts:-)
She hasn't been able to keep up in the weight department. Due to the new height it has now dropped her to below the 1st percentile for weight. If she repeats her typical pattern she will now spend the next several weeks adding some weight. She actually broke the 25 lb. mark which was a huge milestone, but she had a tummy ache over the weekend and dropped back down to 24 lb.
She is using her light weight to her advantage, however, and is taking flight in therapy! Today she decided it was time to do laps. She refused to sit down, she only wanted to stand, and then she wanted to walk. With one therapist holding her hands and one holding her hips for stability she then proceeded to march around the 8x10 carpet, not once, not twice, but 4 times!! We were all amazed, to say the least. I think her therapists are having to re-write all of her goals this afternoon because she just passed and surpassed a whole bunch of them.
Strong and determined are much to mild to describe this girl. Try charging warhorse, locomotive, launching space shuttle. Watch out world, Lily-an is coming!!

Treasure

Well I made it official this week. While I am not closing the door of the Purple Pincushion entirely, I am wholly and completely committed to a full time position outside of the shop. The retirement benefits were too good to pass up. My position is fully vested in the Matthew 6:19 plan.

"Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also."

I am now a 100% full time MOM! Mike's business is really taking off and I feel like I can set aside my business at this point and focus on the much more important work at hand, helping Lily grow healthy and strong, loving and thanking God all the way. It is a weird transition for me. I have poured my heart and soul into my business for the last 10 years so that I would be able to do exactly what I am doing now, so that I wouldn't be under someone else's thumb. Now if I can just get out from under my own thumb.....Lol!

Wish me the wisdom and grace to be the mother and teacher that Lily needs me to be.

New Year, New Lily

Looks like 2012 has a lot in store for our little girl. For those of you who have not seen Lily since she started her anti-seizure medication in August, I cannot even begin to describe the incredible changes that have been taking place.
I can't even count the number of times, before medication, that I described Lily as strong, determined, and motivated. I never thought I would see that drive and determination increase even more. The girl has become a high speed freight train of accomplishment, focus, and yet more determination.
Today at lunch was the perfect example. One of the major goals Lily has had in therapy since day one has been hand to hand transfer of objects. This shows that the right and left sides of the brain are communicating with one another. This is a goal typically achieved somewhere in the 6-12 month age range. We have worked on this with Lily to no avail these past two years.
So what does she do today, completely unassisted and unprompted? Not only does she complete a precise hand to hand transfer once, not twice, but three times! All while making the additional accomplishment of taking the cracker (object she was transferring) directly to her mouth to take a bite out of it. Another area we have been working on with her, being able to feed herself.
God willing, may 2012 be a year of amazing firsts for Lily!