In One Week...

 Lily and I had a great day.  We spent the day shopping for her birthday.  She is so excited about her party on Thursday.  She can't stop talking about her Mickey Mouse party and her "good friends" that will be there.  We got Frosties and headed home to play outside.  As I type, my little ladybug is braiding my hair.  She keeps asking, "you OK, Mama?" and kissing the top of my head.  I love my Lily so very much and cherish every minute with her.

In just one week, our sweet, silly Lily will be in the hospital at the beginning of a long recovery.  On March 5, Lily will have tendon releases for hip contractures and the surgeon will also cut into her pelvic bone and manipulate the bones over her hip joints to keep them in place.  They will also do a muscle biopsy to determine what type of muscular disease she has.

They'll take her away from us for a 2-3 hour surgery and bring her back in her "hard pants"...a full body cast that will start at her chest and go all the way to her feet.  I won't lie, I had to stop and sob when I typed this.  I haven't been away from Lily for more than an hour since she has been mine.  None of my children have ever had any type of surgery.  Body cast??  I can't even imagine!

I'm sitting here with tears running down my face and guess what Lily is doing??  Making faces at herself in the mirror!!  You can't be sad or worried around this girl.  She just makes me smile.  All of the sudden, she looks up and starts singing Courageous.  It's her favorite.  You know the song, the one I couldn't get out of my head while we were in China.  Now Lily sings it ALL the time.

The only way we'll ever stand is on our knees with lifted hands!  

 Please pray with us this week as we prepare Lily for surgery.
~Pray that Lily will stay healthy
~Pray for her surgeon, Dr. Mayberry, and the anesthesiologist, and the OR nurses
~Pray that Lily will be able to tolerate this long surgery so that they can finish what needs to be done on both hips...if not, we'll have a second surgery and a second body cast after she recovers from the first.  PRAY
~Pray for Trent's Dad, he is still taking treatments.  My kids love their Grandy and we all need him healthy!


I wanted to ask for so many specific things for prayer, but it's my turn to make silly faces in the mirror!!  LOL  Silly Lily just won't wait and I STILL can't tell her no!!

God knows exactly what we need and we know that He will take care of our Beautiful Joy.  Please just pray.

Lily's First Beach Trip

BamFam5 took our first trip to the beach on February 17.  As a family, the beach is our favorite place to be.  We have been dreaming about the day that Lily would be with us with her toes in the sand.

Thirty toes in the Alabama sand...dreams do come true!

 Safe with Daddy

Lily always talks about swimming in "big schway".  She was so excited when we told her that she didn't  have to wait until it was hot to go swimming.  Trent surprised us with a quick trip to Gulf Shores so that Lily could swim and enjoy the sand.  She loved swimming ALL day at the indoor pool.

 Best big brother in the world!!  Reece takes such good care of his mei mei!!

 Sweet Sisters

Lily swam all weekend, only leaving the pool for lunch and bathroom breaks.  We had to force her out each night around 6:00 so that we could go out for dinner.  She didn't like wearing her life vest, so we took turns holding her and letting her kick all around the pool.  She went under several times and came up smiling. 

It was a great weekend.  Looking forward to the summer and a long trip to the beach!!

 

Busy but Blessed

Sick kids, piles of laundry, doctor visits, beach trip (entire post coming soon) have kept me from blogging for almost a month!  Busy, busy, busy but so very blessed.

Here's a quick update of our busy February...

On February 10, Lily had her hair trimmed.  I actually took all three kids for haircuts at the same time and we survived!!!  I was so proud.  My lifelong friend, Carrie, has cut our hair since Mary Ashtyn was a baby, so she makes it easy on us.  We lived beside each other growing up and our parents are still neighbors, so she always takes good care of us.  Lily was a little nervous about her haircut.  She was sure to tell us to only cut "a little".  She was very happy with the end result and especially liked the spray that Carrie used.  We had to smell her hair for the next two days :)

I have to stop here and say a special thank you and give a shout out to.....

LORI JOHNSTON

Without her, I would have no pics of Lily's "first" haircut.  I had my camera in my purse and forgot to snap any pictures.  If she hadn't reminded me, I would have missed this memory.  If you're ever in Centreville and need a haircut, stop by Cut 'n Corner and see Carrie and Lori...they'll cut your hair and keep you laughing the whole time.  We always look forward to haircut days!!   Now, since they are FAMOUS, you can also get an autograph!!!  LOL

Our Valentine's Day was very uneventful, except for the stomach virus!!!  Reece and Mary Ashtyn were both sick, so we didn't even get pics of our three Valentines.    

Our littlest Valentine checking out some of her goodies.  Lily just couldn't believe that all the candy was hers.  

This sweet girl has completely stolen our hearts!!  So blessed that God made her our daughter!

Trent surprised us with the best Valentine's treat...a long weekend at the beach!!!!  That deserves an entire post...SOON, I promise :)

Neuro Update

Lily had her EMG and Nerve Conduction testing today.  Things started off well, we brought along a brand new Mickey Mouse DVD.  She was anxious to see it.  She was happy to see her doctor and gave him a high five.  It's always a bad sign when the doctor tells you that she won't be his friend for much longer. 

Sweet girl focused on her new DVD while Dr. Pierre gets everything ready

Keeping a close eye on things as the electrodes are attached

Lily happily sang along with her DVD and counted with Mickey Mouse as the test started.  As the electrical pulses increased, she got a funny look on her face, started to flinch and tried to scoot closer to Trent and me.  Then, we heard the cry that I had hoped I'd NEVER hear again...the howling that we heard several times in China.  Big tears were rolling down her cheeks while mine were dripping on her pillow.  Poor Trent said he didn't know which one of us to comfort first.  It was so hard to see her hurting!!  Next, came the bad part...what???  It got worse?  YES!   Needle electrodes were inserted in her itty, bitty arms and legs into the muscles.  I wanted to grab her and run, she was pitiful.  It took about an hour to finish but it seemed like much longer.  I was so relieved when we got to pick her up and comfort her!!

 

 Back to her silly self once we left Children's

The only good thing about this testing is that we got immediate results.  Lily does NOT have any nerve damage.  Her neurologist is certain that her weakness is some type of myopathy (muscular disease).  Now they just have to determine what kind.  That involves a muscle biopsy.

So, our orthopedic specialist and neurologist are both ready for surgery.  Our sweet girl will have have hip surgery to hollow out her hip sockets, tendon releases for her hip contractures and a muscle biopsy.  It is good that our doctors will work together and be able to do all these things during the same procedure.

The question that we have been asked most in the past two months is when Lily will have her surgery.  Well, we can now answer that one:   March 5, her birthday :(  If we didn't take this date, we would have to wait until the end of March.  This is also the week before our Spring Break, so Trent will have a week off to help us get adjusted to the body cast.  We will be planning a huge birthday party the week before Lily's surgery.  

Lily is ready for surgery and a body cast.  She understands that this will help her to straighten her legs.  We've started watching videos of other children in body casts and explaining everything to her.  Silly Lily is already demanding that her "hard pants" be blue.  "No pink, no green, Mei Mei wants blue pants"!  

 

She will hold two fingers out straight and make the walking motion.  She knows this is the first step to help her walk and she wants to do it!  When she found out we were going to the doctor today, she held out those fingers and smiled so big.  She thought today was her surgery and she was excited!! 

Lily is ready and I'm getting there.  I still can't imagine her being rolled away from me on her way to a major surgery.   Scheduling this surgery has been difficult for me, I just don't want my baby to hurt.  All of her doctors agree that it is the right thing.  Her hip contractures keep her from straightening her legs, so she must have the tendon releases done.  I have no doubt that Lily will be fine.   We've said it over and over, God has huge plans for her.  We are reminded of that daily.

 

 

 

“Therefore strengthen the hands which hang down, and the feeble knees, and make straight paths for your feet, so that what is lame may not be dislocated, but rather be healed.”

Hebrews 12: 12-13

Happy Heart Day!!

 A happy heart makes a face cheerful.  Proverbs 15:13

It's not Valentine's Day yet, but we are celebrating Happy Heart Day!!!  Lily had a cardiology appointment today and we got an excellent report.  Her other doctors recommended that we get her heart checked due to her muscle weakness.  What a relief to hear that her heart is perfect!!!   That makes Mama's heart very, very happy!

~My Sweethearts~

I am loving the sweet outfits that NaNa makes for Lily!!  NaNa actually belongs to some of our best friends,but we are so blessed she claims us as her own :)  Not only does she keep Lily looking super cute, she is also one of our biggest prayer warriors.  I wanted to get a picture of one of  the latest outfits, and Silly Lily turned it into a complete photo shoot!!  I just have to share these...she came up with all of her own poses.  Diva, my friends, TOTAL DIVA.

Love this little girl and her great big personality with all my heart!!  

Please pray for her tomorrow, she has nerve conduction/EMG testing with the neurologist.

My Majorette

 

CMS Majorette tryouts were yesterday.  Mary Ashtyn twirled during the 2011 season and tried out for her second year.  She worked so hard all week and I am so proud of her determination.  Right after tryouts started, she texted me in a panic to say that she had dropped on two of her tricks.  She got to do them again and caught them, but she was very upset.  I've watched her catch them time and time again all week, so I knew it had to be her nerves.  I told her to calm down and relax so that she could get through her two routines.  Of course, I was a nervous wreck by this time and started praying that God would calm her down. 

After what seemed like a few years, I got another text letting me know that she had done great on both routines with NO drops.  I texted back to tell her that I knew she could do it and that I'd been praying.  Her sweet response..."I prayed too and it worked!  I felt Him with me the whole time".  My friend was reading the text with me and we both got teary eyed.  I told her that was all that really matters!!  Of course, I want my sweet girl to be able to do anything she wants; but the most important thing is her daily walk with Christ.  Seeing her grow in her faith means more than anything!!

So, is Mary Ashtyn a 2012 CMS Majorette??   YES, she is!  Very proud of my girl for so many reasons.

 Mash's Second Biggest Fan, Mom is still the #1 Fan

Celebrating at Juane's...Smile if you're a CMS Majorette!!!

Yummy!!!

My girls baked a yummy dessert last Thursday.  Mary Ashtyn is a baking pro,but this was Lily's first time to help.  Mash and I found a three layer dessert on Pinterest that had chocolate chip cookies, Oreos, and brownies...we HAD to try it!!!

Working together...yes, Lily is on the counter :)

Looking Yummy!

 Dessert in the oven,now for the best part...eating the leftover batter!

Lily loved it!!

 They even did their own dishes!

 Little Ladybug washing dishes

He didn't help cook, but Reece really loved eating it!!