Monday, March 12, 2012

1 Down...5 to Go

 Mei Mei and Mickey-matching hard pants

It hasn't been easy and it sure hasn't been pretty, but we have survived our first week of Lily's hard pants!!  The muscle spasms and pain were rough for several days, but seem to be much better now.  Toileting is under control which is a major relief.  At this point, Lily is tired of being confined.  Since Friday, she has been very sad and has cried a lot.  It just breaks our hearts that we can't even really comfort her because of the cast.  So frustrating!!!

Saturday was a tough day.  She just couldn't get comfortable and refused anything that we tried to do.  At one point, I just picked her up and took her outside to ride in her wagon (with piles of blankets and pillows).  She was not happy that I forced her outside, but I knew she needed a change of scenery.  ALL she wanted to do was lay on her blanket and watch Mickey Mouse.  We noticed that her arms and neck were extremely weak.  When we picked her up, Lily's head would just roll forward.   My biggest fear about the surgery and body cast is that she will lose what muscle strength she has.  It terrifies me.  Please pray with me that she will stay strong and not lose all the progress that she has made in the past 3 months.

Sunday was not much better.  My Silly Lily was lethargic and just sad.  I was crying, she was was a full blown pity party.  I tried to get her on her tummy so that she could color or draw, but she just laid there with her head in the pillow and sobbed.  Finally, I just pulled her to me and laid down on my back.  She wrapped those sweet little arms around my neck and we both sobbed.  I promised her over and over that her Daddy and I would always love her and take care of her. 

Today,  we woke up determined to have a good day.  Trent and the big kids are home for Spring Break, so we made Mickey Mouse shaped waffles.  Lily loved them and giggled while she ate Mickey's ears.

 The best big brother in the world painted with her while she laid on her tummy!!!  Finally :)

We have some friends who just got home from Disney World, so Anna Blair and Reagan came by to bring her surprises.  She loved her Mickey necklace and bracelet!!!  They also brought her a picture of Mickey Mouse, and she has looked at it all day long.  I had to make her take off her new jewelry before bed. Don't you think it's time for BamFam5 to plan a DW trip??  Well, AFTER the hard pants are gone!

Wearing her new dress from NaNa, waiting for her friends to visit

Now that I'm not scared I'm going to hurt her, I can carry her on my hip.  I took her outside to watch Trent and Reece play basketball.  She giggled and cheered for them.  We finished off our afternoon making Play Dough ice cream treats.

Praying that today is the beginning of getting our Silly Lily back.  She is a smart little girl and this is really tough on her.  I've said it a lot, but I know God has big plans for this little ladybug.  This is all part of His plan, so we'll fight our way through the next 5 weeks.  Can't wait to see how God uses this experience to remind us all that nothing is impossible for Him!


  1. reading your posts over the last few months has brought both tears and giggles. the triumphs over the weakness and cast will come for her. lily has come along way so far. God has miss silly lily in his hands and is blessing her in every way. your little triumphs happen everyday with her smile. sending a prayer up everyday your family.

  2. Bless Lily's heart (and your's too)! I cannot imagine how difficult and frustrating this must be for her.
    So thankful she has a family that loves her so dearly to bring her through this difficult time.
    And yes, I think a trip to WDW definitely needs to be part of the plan once she has recovered!!!

  3. So glad to hear that one week is past - they go so quickly -except when you want them to...I advocated to Lily when her videos were posted and was so happy when her family found her.

    I was just wondering (here is my 2 cents-for what that is worth - note - I am not in any way a nurse/dr etc) what about the stuff they do for rehab - ie to keep the strength she has in her arms - tiny weights or for that matter cans of something fm the pantry that is light - then let her do lifts/curls etc - and for each set she gets a mickey sticker - then when she has say 10 she can trade them for something from the treasure box (ie the dollar store stuff)...that way it is a win win... May God speed her little body and smile upon the family and love that surrounds her...
    Carol in FL (very near Mickey...:-)

  4. Does Lily have a wheelchair? Would the angle of her hips allow her to sit in one? Maggie had to recline some in the wheelchair, but she liked being in that more than anywhere. She could push herself around, which helped her maintain some upper body strength, and she was soooo happy for the independence. Plus everyone loved wheeling her around the house--probably going a little faster than they should have! We also let her lay on her stomach on the kitchen counter (with lots of towels under her) and let her play in the water in the kitchen sink. It would give her something fun to do for about 30 minutes. Thirty minute intervals were how we passed the days.

    It's not fun, and I'm so sorry she is struggling. I'm praying it will get better! And soon!!

  5. Praying for you and Lily today!

  6. God works in increadible ways, I talked to Trent today and we have a 8 y/o daughter with the same type of MD. We look forward to hearing more about Lily.