Enjoying the break...

Wow !! I can not believe it has been almost a month since I last blogged !!!! Shame on me !!! I'm so sorry !!!!  It's amazing how one day just sort of rolls into the next, and before you realize it, a month is gone !!  I also can't believe that Mia has been out of her cast for a month !!!  Truth of the matter is....we are really enjoying this break !!  Mentally, physically, spiritually, emotionally...you name it, we needed it !   Life without a cast is so much better !!! She is loving the freedom !! I wish I could make her understand that the more she uses it, the more it will hurt, but, she is 2 and what can ya do?  During the day, she is all over the place !!  We didn't expect her to crawl, walk or do much of anything for at least a year.  However, our girl (who continues to amaze me daily!) moved her legs as soon as the cast came off!  She insisted I put her pants on (didn't expect her to be able to close her legs enough for that), and when asked if she wanted to ride home laying down (her usual casted position) or ride sitting up, she said, "sitting up!!!".  And so she did.  4 hours out of the cast, she looked at Daddy and said, "I want to stand".  And, so she did.  The next day, she announced, "Mamma, I want to crawl"...and, so she did.  Her spirit, determination and 'can do' attitude just amaze me !! 

Standing up, testing out the new hip just hours after having the cast removed.  ;)



Her new favorite thing to do, is to hold your hands, so that you can help her walk.  I have no doubt that before long, she will be letting go, and doing it on her own.  She's already trying.  Only one thing stops her.  The pain.  Unfortunately, her nights are usually still pretty 'ugly'.  Using her legs so much during the day, brings on some horrible pain at night.  In turn, the pain will usually trigger a night terror or nightmare of some kind, and so our old routine continues.  I do, however, believe we are making progress !!  When she does have a good night, it's GREAT !! She sleeps straight through 10-12 hours or so.  We are going longer and longer between pain med doses...and overall, during the day she seems happier !!  Much happier !!  Now, if we can get the nights to get in line, all would be good !!
We are looking forward to holidays, particularly since we know we won't have to deal with casts or surgeries...and we'll even get to spend her birthday (in Feb.) without them as well !!! 
We see "the amazing" Dr. Heflin again on Jan. 23rd, to discuss the next surgery, which will be sometime at the beginning of March....but, you know what ??  We 're not going to think about that right now !!! We will cross that bridge when we have to, and for now....we are just going to continue to enjoy the break !!!!!

Here is a little video scrapbook I made of Surgery #1...I apologize for it's length...trying to get 3 1/2 mos. down to 8 minutes was tough !! haha...and I'm sorry that I couldn't include everything...we have been so amazingly showered with love throughout this ordeal, that I could not possibly include it all....but this will give you a pretty good idea of that love and of what we call "Team Mia" !! ;)

We love and appreciate each and everyone of you !!!!! We are blessed beyond words and beyond measure !!!!  And, we are so proud to call all of you our friends !!!

Thank you for all that you are, for all that you do...and, for just being you !!!!
And, thank you for being a miracle for our Mia !!!!
With a Mommy's heart,
xoxoxox

A "complete" song....

This week's lesson....in life, in order to have a "complete" song...you must have both 'high' notes, and 'low' notes.

All 'high notes', and you get a sound that can almost begin to hurt your ears.  You just can't sustain that for long.  You need to be able to settle back down.  All 'low notes', and the song gets dismal, dreary, and to me just stagnant.  You feel as if it "isn't going anywhere".  It just doesn't do much to lighten your spirit.  If you're really lucky, you get the beautiful sound in between the highs and lows...known as the 'melody'...the thing that carries you through.  I believe that the highs are meant to 'enhance'...the lows are meant to be your foundation, to learn from and build on.  And, the melody is really just the "whole point"!

Our 'highs' come in forms such as that amazing weekend with our Il Volo family, which, I just wrote about in the last post.  They also come from each of "Mia's Miracles", of which, you are one.
Our 'lows' come way too often in the form of pain and suffering for our Mia.

Nights like tonight are a low.  8 weeks out of surgery...8 weeks in this horrible body cast, and still her spasms and pain are unrelenting.  I sit for hours and rub her little leg.  I watch her as she wiggles and moans in pain.  "Are you ok, Mia ?"..."what can Mamma do?"...."just rub me" says her little voice.  "Just stay with me and rub me."  And, so I do.  Willingly.  Gladly.  Anything to ease her pain.  Anything to see her smile.  There were no smiles tonight, just pain and sadness.  As she lay there clutching her "Ignazio" pillow in one hand, and her "Goofy" doll in the other,  I watched as she began to relax and doze off, and, my heart ached.  Please don't misunderstand me here. We, as parents (and every parent I have spoken with whose child has hip dysplasia has said the same thing!) in the grand scheme of things, we are very, very VERY grateful.  We are wise enough to know our blessings.  When it comes to what is wrong with our children, we are grateful that it is, so called, "structural" and can be fixed !!!  And, we, I, thank God everyday for that !!!  The problem is that the 'uncertainty', the 'fear', the 'pain', the 'suffering'... they are all very, very real.  I want so badly to take this from my Mia and do this for her, I could die.  I would die. For her, absolutely. 
However, I can't....and right now, I, Daddy, and each of you have the amazing privilege of being her 'melody'.  The thing that carries her through.

One day, she will be strong enough to sing her own melody, and, while your 'part' may change, you will always have a role to play, and we will always be so grateful and blessed that each of you have chosen to be part of Mia's song.

When you aren't strong enough to be your own 'melody', I believe God gives you those you'll need to help carry you through.  I also believe that you always have that choice for others.  You can choose whether or not to be someone's melody, and carry them through.  You can choose the part you will play in their life.  A 'high', a 'low', or a 'melody'.  "Enhance" , make "dreary", or "carry them through"...always yours to decide. 
Each day, new songs....new opportunities.
The fact that you are here is no accident.  You chose to click on her link.  You chose to visit this blog.  By doing so, you chose to be part of her song.  And, your music warms our hearts.

I made this page to share Mia's journey with you.  Sometimes we celebrate.  Sometimes we cry. 
But, all of it, we do together !!!  In perfect harmony.

With a Mommy's "singing with gratefulness" heart,
xoxoxo

A true 'high note'....

A few posts ago, you read all about our Mia's great love, Il Volo !!  I talked of their amazing talent, their gentle hearts, and their kind and loving souls.  This past weekend (Oct.9, 2011), thanks to our dear friends Linda, Annamaria & EMI Vision we had the astonishing gift of being able to attend their concert in Melbourne, FL !!!
At every concert on their North American tour, Ignazio, Gianluca & Piero have dedicated the concert to Mia.  They have shown the most beautiful video of her, their "biggest fan", and the world watches as our girl sings and dances with "her boys".  The video was done about a month before her first surgery, and everytime I see her standing and dancing, it warms my heart.  I know we will get her back to that point one day, and it gives me hope!  After they play the video, Gianluca says, "and, now, Mia, you must be strong and get well."  Piero chimes in with "one day your wings will be strong enough and you will fly to us."  And, Ignazio, with his tender heart always looks so choked up, and begins the Elvis Presley song "I Can't Help Falling in Love with You"...a song they have no way of knowing has always been my favorite Elvis song.  And, so the three of them sing to her.
At the concert this past weekend, it was so nice to hear Ignazio say, "our Mia is here"...and Piero say, "finally your wings are strong enough, you fly to us".  They held her, they kissed her, and they took her heart on an incredible flight !!! Here, I'll let you watch.....

I know.  Simply amazing.

For a brief period, Mia completely forgot her pain.  She forgot her cast.  She forgot all of the ugliness that this whole ordeal has given her.  And, with every ounce of her being....she laughed, she clapped, she sang, and she danced.

You cannot imagine how much I have missed seeing her like this !!!!!

How do you begin to thank Il Volo for the way that they love her? 
How do you begin to show your appreciation for this gift ???
Ignazio, Gianluca & Piero are loved by us for many reasons, but the way they have taken her as their own, worried about her, prayed for her and loved her completely is quite simply, God himself.
These boys are Mia's heroes.  Particularly, her Ignazio.  I do not know if even they realize how, they give her hope.  She draws strength from their love, and they do something for her that I, Daddy and others couldn't at the time....through all of her pain, they made her smile.  I watch her as she watches them, and I am amazed.  Such, a tremendous love from such a little heart. 

Both Daddy and I are so grateful to Il Volo...to their families...to their managers...their production companies...to their fans, and, everyone associated with them !!! They immediately opened their arms, and welcomed us to their family !!!
We will carry you all in our hearts !! <3 <3 <3

A few pictures for you, so that you can share this moment with our Mia.

left:  Mia & Mommy before the concert.    right:  Daddy & Mia after.

Yeah, it's kind of a "sore" subject....

Hi everybody !!!

Well, my last post was on Thursday, the 22nd of September, and you all read how the amazing Dr. Heflin (who must be worn out by now !!) met us at the ER to cut out a portion of her cast.  The next morning, (Friday, the 23rd) I had to call him yet again, to tell him that I had found some nasty 'red spots' on her, which looked to be sores.  He said to bring her in that afternoon, that he needed to check them.  We arrived at his office around 1, and he brought us right back.  With one look, his response was, "yep, we need to change this cast."  Within an hour, we were on our way back to Egleston to be readmitted.  The next morning, (Sat. the 24th), he took her in for an emergency cast change and arthrogram.  The cast changes have to be done under anesthesia, so it was like "surgery day" all over again.  Again, we met with the anesthesia team, we said our 'see you in a bit' with tears and kisses in pre-op, we sat in the waiting room, and then waited for her to come out of recovery.  The change went well, praise God, and the arthrogram (which is a test where they put dye in her hip to get a much more detailed view) showed that her hip is healing quite beautifully ! He was very pleased !!! ;)
We are so grateful to Dr. Heflin for 'hearing' us when we talk to him, and responding so quickly to our concerns !!!!  When he took the original cast off, it was completely soaked with sweat, and the wet fabric rubbing on her had caused sores all the way around the top of her legs, and up the back of her bottom.  Even where he had just cut the back out 2 nights before had already begun to cause another 'ulcer' type sore there.  So, while we hated the process, we are beyond grateful that it was done and successfully !!!
Mia will go back on Oct. 10th to have an 'adjustment' made to this cast.  Dr. Heflin built this cast, so that the leg which is currently casted to the ankle can be adjusted and the cast cut to be above her knee, such as it is on the left leg now.  She will wear her new cast (which is lined with this VERY cool stuff, which draws out moisture and helps it evaporate, so hopefully we won't have any more sores) for anywhere from 6-8 weeks.  I'm sure he will do another xray on the 10th to see how she is progressing, and will make a decision from there !
So, we are back home from the hospital....again, praise God !  And, while this new cast has presented some new challenges all it's own, we again, are incredibly grateful that her sores are healing, and she seems more comfortable !!!! ;)
Our unbelievable gratitude goes out to the amazing Dr. Heflin (yeah, I think that should be his new 'legal' name...LOLOL) for sticking with us and continuing to navigate us through these uncertain storms....and we also thank each and every one of you for your consistent and constant love, prayers & support !!!!
Will report back soon !!!!
Mia sends love as do Daddy and I !!!
Thank you for being a miracle for our Mia !!! ;)
With a Mommy's grateful heart,
xoxox

Unexpected detours...

Detours, do you embrace them or stress over them ???  Just wondering.

Last night, I learned a lesson about detours.  They come with "uncertainty", and that, by it's very nature can bring with it 'fear'.  The fear of not knowing.  "Where am I going?"  "What's going to happen?" "Will everything be alright when we get there?"  Realistic worries.  Realistic questions. 
Why bring this up?
Well, for the past 3 or 4 days, Mia has been complaining that her back was hurting.  We had been kept up all night for 3 nights straight.  I had mentioned this to her surgeon, and he said, "let's watch it, and if it gets worse, call me."  Yesterday morning, I called.  Her pain had reached a point where every time you put her down, she screamed.  I told him that I got one finger far enough up the back of her cast to touch her lower back, and that when I did, she screamed bloody murder, and it was awful !!!  We all worried that it was a cast problem. He said we need to cut a portion of the back out, so as to relieve her pain and to make sure that the cast wasn't causing an ulcer in her back.  So, once again, we load up our precious girl, and head to the emergency room.  Driving there, I kept noticing all of the road signs.  I realized how grateful I was that God gives us such 'direction' to navigate our way through areas we've not been before. 
The amazing, Dr. Heflin, met us at the ER, and immediately began to cut away at a portion of her cast, all the while talking to Mia, and helping to calm her.  Giving direction and steering us through 'troubled territory'....every journey needs a navigator, making detours a lot less frightening !!
Once the cast was opened, we could see, quite clearly, that she did in fact have a nasty ulcer going on, but that praise God, because the warning signs were noticed, it had not yet broken through the skin !!!  This could have been a very ugly situation, and we are so very grateful it was caught in time !!! 
She is still in a lot of pain, and will be for a while until it heals.  Again, but for the 'signs' that God gave us to let us know of "danger ahead"....this post would be very different !!! ;)

So, having gone through this, it occurred to me, that 'detours' may seem scary, and uncertain and frustrating, but they are usually BLESSINGS in disguise.  Taking a different route sometimes is just what is needed to see things differently, and explore the unknown.  They can save you from lots and lots of trouble !!! ;)  Dr. Heflin felt bad about "making us drive all the way up there." but, it was worth it !! So very, very worth it !!! And, Daddy and I would drive to the ends of the earth for our girl.  That was never an issue.

As I 'travel' through life, I will do so knowing a couple of things....for each journey I undergo, I will always let God stay in the Captain's chair !!! I want Him calling all the shots for me and my family !!!  I will be grateful for the rest of the 'crew' that He sends (which He ALWAYS supplies) i.e., our Navigator, Dr. John Heflin....my 'first-mate' (I know this is a 'boating' term, but we travel is many different ways !!! LOL) , My Michael....and the rest of our crew, our family and friends, who are always there to help us, support us, love us and pray for our safe journey !!!!  We love you all so very much !!!!

Next time you find yourself on a new "adventure"....relax a little !!! God is in control, He's going to take care of everything you need.  He'll supply it all...the people, the places, the things....He's got it all !!!!
He has us in His hand, and He's going to take very good care of every one of us, until we all safely reach our destination !!
Know that you are all loved and prayed for !!!! And, thank you for being a miracle for our Mia !! <3
With a Mommy's "much more relaxed" heart,
xoxoxox

4 week Post Op Follow up- Surgery #1

Hi everyone !!
On Monday, September 19th, Mia had her follow up visit, post surgery !!  The visit went very well !!!
Dr. Heflin (did I mention how much we love him ??!!!)  ;)  was so very pleased with how well her hip looks, and how great she seems to be healing !!!  Oh, here's a pic of our fabulous doctor with Mia.....

Mia and Dr. John Heflin, M.D.

We talked a bit about some pain that she is continuing to have, and we agreed to 'watch' it, and of course call him if, Heaven forbid, it gets worse.  We set up a 'game plan' to leave this cast on for another 2 weeks.  At the 2 week mark, we'll go back to the hospital for what we hope will be an outpatient procedure, for them to shoot some dye into her hip (yes, there is a 'technical' medical term for this, but forgive me, it's late and I just can't think of it !! lol)...this dye will allow him to see the hip in great detail to be sure everything is actually healing as well as it appears to be.  While there, they will cut her out of this cast, and place her in a new one, known as a "pantaloon" cast.  This cast will differ in that both legs of the cast will be short, such as the left one is now.  She will wear the pantaloon cast for another 4-6 weeks.  We expect, hope and pray that this second cast will come off somewhere around mid-November, and then, guess what ???!!!  We get to take a break !!! YAAAY!!!!  He said that he feels that she needs a break, and that Daddy and I do too (see why I love this man ??!!), and so we will wait until after the holidays, AND her birthday before we start the process again on the other side.  I expect that surgery #2 will take place sometime at the beginning of March.
Giving Mia this break, will also allow the hip to get some usage, and help her to regain some range of motion in it, before immobilizing her again for another 2-3 months with the second surgery.  Hopefully, this will help strengthen those muscles, and keep the atrophying to a minimum.  I can hope !!! ;)

If the pain she has continues, I'll have no choice but to call the good Doctor back, but hopefully, we're making progress and that won't be necessary !!! 
We want to thank everyone for all of the gifts, cards, letters & most importantly, prayers, that you have sent, and continue to send !!! You have made her smile more than once, and this of course, makes Daddy and I smile LOTS !!!
We love and appreciate you all, and as always, thank you for being a miracle for our Mia !!!!
With a Mommy's grateful and humbled heart,
xoxoxo

Mia and Daddy in the waiting room....<3

 

 

 

Mia and Mommy <3

Surgery #1

Oh my gosh guys, PLEASE forgive me !!!  It has been absolutely NUTS in the past 13 days since her surgery, and I'm so sorry for not having updated this sooner !!!!!
Her first surgery went very well, praise God !!! The doctor was ...ummm....ok, 'blown away' by how bad she was...he said it was awful in there.  Poor angel !!  Surgery lasted right at 4 hours and he was pleased with the way it 'set'. 

Our girl, just out of recovery.

 

 

 

 

 

Resting comfortably, with "Jay", her teddy bear by her side.  They've had a rough time, these two !

Our hospital stay lasted 5 days...during which, we had a couple of 'issues' with her pain meds....let's just say that we have learned (the hard way), that Mia has a really bad adverse reaction to Valium.  We'll leave that there, and have now put that on her "allergy" list !! :/   After coming home from the hospital, we continued to have some uncontrolled pain.  This took us back to the emergency room.  There, they did a scan to be sure that the hip had not moved, and we were very happy to learn that it hadn't.  We were, however, readmitted, for pain management.  Thankfully, once we got that back under control, we were able to come home, and day by day, it has gotten a little easier.  She has had a terrible time getting used to this cast (as anyone can imagine), and her limitations are becoming painfully obvious to her, no pun intended !!
So as not overload this posting with pictures, I will post them on the "photos" page (what a concept, huh ?! LOL)...and everyone can see how well she's done !!!
We go back to the doctor on Sept. 19th for a follow up with a new scan, and to decide how much longer she will have to wear this cast !!! :)
We cannot begin to thank you all enough for your constant love, support & prayers !!! Please know, and believe, that we have relied on them heavily, and have gained tremendous strength from them !!!!  God used each one of you to hold us up and get us through !!!! One surgery down, 3 more to go !!!
Praise, Jesus, we will see her run again, one day soon !!! ;)
With a Mommy's grateful heart,
xoxox

"Jay" sends his love too ! <3