Thursday, November 17, 2011

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, 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,

Wednesday, October 19, 2011

A "complete" song....

This week's life, in order to have a "complete" 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 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,

Saturday, October 15, 2011

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 their their managers...their production 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.

Tuesday, September 27, 2011

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,

Thursday, September 22, 2011

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 '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,

Tuesday, September 20, 2011

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,

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

Mia and Mommy <3

Thursday, September 8, 2011

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,
"Jay" sends his love too ! <3

Sunday, August 21, 2011

Say You Will....

Say that you'll come with us,
Say that you'll go too
Promise you'll be by our sides
And that you'll pull us through.

Say that she will walk again
and run and jump and dance,
say her pain will all be through
for sure, not just "a chance"

Say that you'll stay with her
in rooms where we can't go
and guide her surgeon's heart and hands,
and that Your peace he'll know.

Say that you will strengthen us
and help us help her heal,
And, say your strong and loving arms
are what we'll always feel.

Say you understand our hearts
our hopes, our prayers, our dreams
and say you'll take away our fears
as hard as that all seems.

Say your love for us is great
say you're in control
say you'll help us turn to you
when 'weakness' takes its toll.

I shouldn't need reminding, Lord
I know you're with us everday
You show your love and 'lift us up'
through those you send our way.

The love that has surrounded us
could only come from you,
Bless them all, Lord, one by one
and let them know we love them too.

We're thankful that you carry us
as "uncertainty" draws near
we know that you will hold us tight
 with you, we need not fear.

Yes, I do believe you'll come with us
and that you will go too
and that you'll be right by our sides
and that you'll pull us through !

Thursday, August 18, 2011

Cards & Letters

You guys are all soooooooo great !!!!!!
And, because so many of you have asked where you can send a card/letter, Mia's amazing Memaw & Poppy have set up a P.O. Box for her so that you can !!!!!!  Thank you, Memaw & Poppy !!!! And, thank you to all of you for your constant love, support & Prayers !!!! ;)

Please send to:
Miss Mia Jay
P.O. Box 27
Lovejoy, Ga 30250

And, thank you all for being a miracle for our Mia ! ;)
With a Mommy's very grateful heart,

Monday, August 15, 2011

Surgery details....

All ready to go.....
 Ok, so as you all know, today was the day to "meet the surgeon".  He is the best part of our visit !!!  He's a wonderfully sweet man, seems very capable, and he and Mia got along great !!! No meltdown like we on Friday with the pediatrician !!!  That's the good news !!!!  Mia really likes her "new friend" Dr. Heflin !!  And, Mommy and Daddy do too.

Now, onto the not so great part of the visit.  We have been up to this point, (clearly, quite foolishly I might add) been thinking, "okay we go in, we do surgery, we fix the problem, done deal."  Yeah, not so much.
Dr. Heflin took a new set of x-rays today to get a fresh look, and well, it's somewhat worse than we thought.  Apparently, her case is really bad.  He feels fairly confident that we can get this done with 4 surgeries.  He does not want to do both hips at the same time, because given the magnitude of the surgery, it would just be too much for Mia.  They want to minimalize blood loss and pain, and feel that to do the surgeries separate would be better.  So, on the 23rd, the will go in and fix her right hip only.  She will be in surgery for 4-5 hours....and, in the hospital for 4-5 days.  While in surgery, they will do away with the additional sets of hip sockets which Mia's body has tried to produce, the will have to cut and form the sockets which never formed correctly, they will have to "clean out" the area of the socket which right now has ligaments, tendons & muscles growing in there, since the femur was never in there to keep them out, and well, cause basically they could.  And, last but certainly not least, they will shorten her femurs by about a half inch.  They will put in "hardware" (plates, rods, screws, etc) to hold everything together.  Then, she will go in a cast for 3 months.  During that 3 months, she will undergo several CT scans, to be sure that the hip isn't moving...if it does move at all, we go in immediately, open her back up and put it back. (We're praying this doesn't happen !!) 
After the 3 months, they will cut her out of the cast, and do the entire process again on the left side.  Back in the cast for another 3 months.  At some point (and I'm not clear when, I was a little 'dumbfounded' and still somewhat stuck on 4 surgeries !) they will have to go in to remove the hardware.  One surgery for each side.  Hence the total 4.
Now, this surgery is Mia's best chance at being able to avoid total hip replacements by age 20.  And, while he says she will never be 100% and will always have limitations, this will ease her current pain, and prevent further crippling.  Or so we all hope.  He does feel that Mia's hips are "salvageable", (and he tried so hard to be kind when he said that), but he let us know he's
going to do his best to get her as close to "right" as he can.
The only thing he stressed over and over again, was how "major" this surgery is, and how "horrible and long her road to recovery will be".  By the end of the meeting, we got it.  There is nothing easy about this procedure...and there's nothing easy about afterwards.

So, we will be at Egleston Children's Hospital at 6 a.m. on the 23rd of prepare for surgery at 7:30 a.m. 
We are going to ask that everyone say a prayer for Mia at 7:30 a.m. on the 23rd.  Please.

We are so grateful to each and every one of you for being with us, and for walking beside us.  We love and appreciate you, your prayers, and the way that you have all loved us.
We have incredible hopes for our Mia.  We trust that God will guide Dr. Heflin, God will heal our Mia, and that God hears all of your prayers for us. God gives us strength through you.
With an incredibly sincere heart, thank you.

And, thank you for being a miracle for our Mia,
With a Mommy's heart,

waiting for the doctor, playing with Daddy's hat.

Aren't I cute ??!!

Friday, August 12, 2011

Meeting the new Pediatrician...

Okey dokey....weeeeell, the lesson learned today was, "don't assume anything will be simple" !! LOL

Today, we went to meet Mia's new pediatrician.  The thought process was that since she is going to be a new patient for him, and him a new doctor for her, well, I thought they should meet.  I don't know that I won't need to call him after surgery for something else, and I just kinda thought that as her new doctor he should have a "heads up" that she's having the surgery, etc.  For the past couple of weeks and up until today, I was thinking..."no real examination....yeah, ok...we should be good !!!  A piece of cake !!".  WRONG!!
Apparently all of these doctors visits have made my girl somewhat paranoid.  She had a HORRIBLE meltdown, didn't want him to touch her, to look at her or anything!  It was just "ugly".  On a couple of different levels.  Our new doctor (who really is a VERY nice man) said that Mia looked good...checked her iron...looked her over...watched her walk...and, said to let him know how the surgery goes.  I feel better that he knows, at least, a little something about her now.  As the visit progressed, I began to get a glimpse of not only Monday's visit to meet her surgeon...but, the week after, when we go for surgery.  If she reacts anything like she did today...well, let's just pray she doesn't.  The only thing that calmed her down was her music.  Thank God I have her favorite group (Il Volo) on my phone....she said, "Ignazio sing to me and make me feel better.".....You got it !!! Grabbed the phone, pushed the button and said, "Sing, Ignazio, Sing !!!"....thankfully, it worked, she settled down, and we could get her dressed and out of there !!!! ;)

Aside from the meltdown of "biblical proportions", the visit was very good.  We believe we have found a very good doctor for our Mia to see....and, we became even more incredibly aware of how grateful we are for all of the prayers being said for Mia and for us.  Please, please keep them up !!!  Clearly, we need them !!  ;)

Monday (8/15/11) should be another post, after we meet the surgeon, and get all the details for surgery.

Thank you all for your continued love, support and prayers, and thank you for being a miracle for our Mia !!!
With a Mommy's heart,

listening to Ignazio, Gianluca & Piero, and beginning to settle down....

This is Daddy's "she's breaking my heart" face....he just wanted to get his girl out of there !! ;)

Monday, August 1, 2011

A Side Note...

Ok, well, we're going to digress from health related things for just a minute.  We have GOT to tell you all about the MOST amazing group of people that we have met, but first, we must introduce you to the reason why !!!  Over on the right hand side of this page is a section called "Little things that make Mia smile"...and, in that list, you will see "Il Volo".  <---there's your reason 'why' !! LOL  Mia wants to make sure that everyone knows who Il Volo is, how much she loves them, and how great they have been to her ! 
We first encountered Il Volo when they made their American debut on American Idol....had a dear friend, (thanks JJ!!) not called and told us to "put it on, NOW !!"...we would have missed them !!! As soon as they came on the screen, both Mia and I were hooked !!!!  These are three of the most talented young men we've seen perform in a VERY long time !!!!  And, they are amazing !!!!

From left to right in the pic above is:  Piero, Gianluca & Ignazio.  Oh yeah, all Italian, all the time !!! ;)  And, since I am Italian, and Mia is 1/2 Italian...well, they're just SO up our alley !!! lol 
In case you've never heard of them....have a listen.... ;)

Oh yeah, incredible....we know !!!! ;)  And, to think....Piero is 17 (may have just turned 18), Gianluca & Ignazio...both 16 !! ;)

Now, onto the amazing people !!! Through a video of Mia which I had posted on Il Volo's fan page, we were spotted by (and have since adopted ! LOL) Wendy Marcinkiewicz.  She heads up Il Volo's fan club out of Houston, is a huge fan, and loves our Mia so very much !!!  Wendy put Mia out on every fan page imaginable, and literally sent Mia "around the world" !!!  She's asked everyone to help us pray !!!....on  Mia's facebook page (which you can access on the right)...we have met and received messages of love, hope and incredible prayer from all over !! We have heard from Mexico, Venezuela, Brazil, Indonesia, Italy, France, and of course from right here in the good old USA !!! And the list continues to grow.  These boys can't imagine the impact they've had and how they've touched people everywhere !!!  I can't tell you how kind and loving everyone has been !!!!!
Wendy, Caitlyn, Gladys and everyone have touched our hearts sooooooo much !!!!! And, we do truly love and appreciate you !!!  Il Volo fans everywhere have blessed our lives !!! xoxo
Ignazio and his beautiful fiance, Francesca have both sent Mia messages on facebook, "wishing her all the good of this world", "sending her BIG hugs & kisses" they say they will "pray without ceasing for the little princess", and that she has kidnapped their hearts.  Yeah, these kids are worthy of "all the good of this world", we love them and wish them all the best !!

So, there you go....amazing group....amazing people !!! Does our Mia have good taste or what ?????  Give Il Volo a try....become a're going to find yourself in some unbelievable company !!!!

 Thank you Il Volo for the smile you bring to my Mia, to me, and to countless others !!!
Thank you Il Volo fans everywhere for your love, support and prayers !!!!  We add you to an amazing 'circle of love' for our Mia, and we are proud to call you all our friends !!!

And, as always, thank you all for being a miracle for our Mia !!!! ;)
With a happy, singing O Sole Mio, Mommy's heart,

Wednesday, July 27, 2011

Growing Pains & Gatorade

Because I do not trust myself to write a whole lot about today's visit, I will simply state what the doctor said.  "It's growing pains, it's very common at her age"
"Give her gatorade before bed, in case it's leg cramps"
"If she's still in pain in a few weeks, we can do some other 'studies' on her, you know, neurological, etc., but of course, by then you'll be at surgery time."
"Otherwise, she looks good."

Yeah, that's pretty much the gist of it.
An hour and a half drive, one way....a full tank of gas....a lost day of sleep for my husband....and an uncomfortably long ride for Mia, and that's what we walked out with.

Please continue to pray my dear prayer warriors....and thank you for being a miracle for our Mia.
With a Mommy's frustrated and somewhat broken heart,

Tuesday, July 26, 2011

Sneaking in...

Ok...well, while the past 2 nights have been much more restful (praise God !!) the three before were beyond 'ugly'...this past Friday morning, I had called the surgeon's office to find out if the level of pain she is experiencing is 'normal'.  Once I described her being asleep yet, thrashing around in the bed screaming "my legs, my legs"...he said, quite simply "no".  So, a long story short, after an exchange of several calls between our amazing, P.A. and myself...he has set us up to have an 'impromptu' appt. tomorrow afternoon at 1:50 to have Mia looked at by one of the Sr. Surgeons.  He is HOPEFULLY going to be able to tell us something that we can do to keep her comfortable for the next month until surgery time gets here.  While moving the surgery up would be nice, the specific surgeon that they want her with doesn't join the practice until Aug. 15th, and that is the date that we'll be seeing him.  Poor Dr. Heflin gets to hit the ground running !! 
So, I wanted to let everyone know that we will be going back tomorrow, and I'll post right when we get home, so you'll all know how it went !!!!! ;)
Thank you so very, very much for the continued prayers, and thank you for being a miracle for our Mia !! :)
With a Mommy's heart,

Thursday, July 21, 2011

"Well, that's the way it should be"

 I have the privilege of having in my life an amazing man....this man has been beside me through so very much, he has always guided me, loved me and "kicked my butt" when it was needed.  (Including busting me smoking in his bathroom, when I was 14 !  Wasn't pretty. LOL)  This man's name is Fr. Vincent Douglass.  He is my priest, my friend,  my angel.  To say that I love him is an understatement.  How do you not love someone who loves you with true unconditional love?.....With an occasional "butt-kicking" to boot ??!! lol
Yesterday, I called to tell him about our Mia, and her surgery. (Her surgery is set for August 23rd in case I hadn't put that out there kinda losing my mind here !!! lol)  Fr. "D" was of course shocked to learn of what was going on, and that she needed surgery, etc.  He immediately kicked in to his normal mode and started with "what do you need, what can I do?"  My answer of course, "talk me off the ledge, then pray."  He listened intently, and when I said, "I'm standing on faith and God's promises", he said "well, that's the way it should be."  I said, "I'm confident that He hears all the prayers that are going up for her and that He is making His presence known." he said, "well, that's the way it should be."  When I said, "I'm tired and I'm scared, because I don't know what lies ahead for my little girl", he said "well, that's the way it should be." 
It didn't really matter what I threw at him, his answer was almost always the same.  "Well, that's the way it should be."  Towards the end of our talk, he gave me a "task", if you will.  He said, I want you to think about our talk, and reason with yourself.  Hmmm...."reason with myself".  Interesting.
After the tears, the "I love yous" and the promises to keep him updated, we hung up.  After Mia went to bed, I sat and did what he had asked.  I thought hard about all that I had said....and all that he had said.  It was then that it occurred to me, that 90% of what he had said was "well, that's the way it should be."  As I 'reasoned' with myself it became clear that while it appeared he hadn't said "much", he had actually said a great deal.  "Well, that's the way it should be" means that God's presence and gifts are being recognized, acknowledged and appreciated.  It means, that we have accepted that this is bigger than us, and that we cannot do this alone.  It means, that knowing your limitations isn't the same thing as "making excuses"'s recognizing how much you need Him and those He sends to walk with you.  And, that when you get tired and think you can't go on...He steps in, lifts you up, makes up the difference of what your short and  helps you finish.  And, in Father D's own special way, he was letting me know that I was ok.  I'm not as weak, helpless, hopeless, tired and awful as I think I am.  He wanted me to know that my faith is still in tact, that God is still with us, that He's going to see us safely through.  He wanted me to know that I am loved.  I get it.
So, I would be completely remiss if I didn't do the other things that I know God has asked of me.
1)  Make it abundantly clear to each of you how treasured you are, and how grateful we are that you have chosen to walk with us through this storm.  We are grateful, and we feel God through you.  Your words of encouragement and love are His words.  Your hugs, His hugs.  Your prayers, His heart.  Sincerely, thank you.
2) Remind myself and everyone else that this too will pass.  Our Mia is in the best hands possible, and He is loving her with a Father's heart, and will hold her in his hand.
3) Remind anyone and everyone who reads this, that He will do the same for you.  Mia's sufferings and triumphs will be a testament to God's love and mercy and healing, and you will all encounter Him as you walk with us.  He loves you with a Father's love, and He holds you in his hand.
And lastly, I'll just put out there my 'philosophy' and outlook on God's plan and will for my life:  I may not always know it.  I may not always understand it.  And, sometimes, I may not even like it.  But, I will always, ALWAYS trust it.
And... well, that's the way it should be.

Thank you for loving us, for riding this storm out with us, for helping us keep watch for the rainbow that WILL come, and thank you, for being a miracle for our Mia !! ;)
With a Mommy's heart,

Wednesday, July 20, 2011

Mia's Friends

Wow !!!  I am always amazed at the miracles that continue to come to us !!!

Some of our newest miracles come to us as new friends !!!  We have added a page here to introduce you to them a little bit, and to provide a place where you can visit their blogs and get to know them better !!  On this page, you will meet Abby, Aleena & Molly (with more to come, I'm sure) and they will truly touch your heart and make you smile !!
Having other parents who are walking the same road...experiencing the same heartbreak, anger, frustration and struggles has been an absolute sanity saver !!! In talking with them, you have that added assurance that you aren't alone and at the same time you get to help them too.  How comforting it is to hear "I understand, we had the same thing" or to ask a question and receive an answer that makes sense to you !!

Whenever your child is sick or in pain your heart hurts.  Seeing any child suffer is just beyond awful.
Having someone who truly understands is a gift.  A truly treasured gift !!

To our new friends: we already love each of have touched our lives, you will forever be in our prayers and our hearts and, we add you to a "circle of love" that will blow you away !!!  We have many family & friends who love us and who we lean on....they are an incredible group of people and you will come to know and love them too !!! ;)
To our "circle":  Please take a minute to visit their blogs, and watch how these amazing children and their parents will inspire you !!
Again, from our hearts, thank you for being there for us and for being a miracle for our Mia !!
With a Mommy's heart,

Friday, July 15, 2011

More Duckies in a row....

Have I mentioned lately how incredible you guys are ???!!!  Truly !!!  Your love and support is just amazing, and we are absolutely humbled !!  'Thank you' seems so 'small' right now, but from our hearts, THANK YOU !!!!

So, preparations are still being made to get ready for surgery day.  Today, Mia and I were talking about our new friend, Abby, and her Mom, Julie.  Abby had her surgery this week and got to come home from the hospital today !! We are so happy for them, and that they are on the road to recovery.  Showing Mia Abby's picture gave me a chance to really begin to familiarize her with words like "surgery", "hospital" and "cast".  It's hard to talk to a 2 yr old about these things, you're never really sure how much they "get", but at the same time, our Mia is as smart as a whip, and let me know real quick that "Abby's legs will be all better now"...and I said, "that's right, sweetie", to which she said, "Mia's cast will make Mia's legs better too".  I think she gets way more than I give her credit for.  Opening the talks, so as to try to minimize her fear and anxiety was Ducky #1.  This Ducky will be used a lot over the next few weeks !! ;)

Next, came the car seat.  With the spica cast that Mia will be receiving, we will need a specially made car seat to both bring her home in, and to be able to take her places.  On another blog, I saw a Mom talking about an organization called Safe Kids.  I looked up their Atlanta number, and they were very helpful as far as putting me in touch with a very, very sweet lady (who's name also happens to be Mia !) who runs the Special Needs Car Seat Division for Children's Health Care of Atlanta.  Ms. Mia assured me, that come operation day, someone would meet us at the hospital, special car seat in hand, and would help us properly install it, and cover all safety questions and guidelines.  How awesome is that ???!!!!!  Another miracle for our Mia, and another 'ducky' in place !!

As I continued to look at blogs, I noticed that one thing all the Moms and Dads were saying was an absolute MUST, was a bean bag chair !  It hadn't even occurred to me that she wouldn't be able to sit on the couch or a regular chair in her spica !!  Well, our treasured Aunt Jackie was on the phone with me as I was reading, and she said ok, go to this site and see if you like this one !  It was an adorable pink with white polka dots, and it just looks like my Mia to me ! As I was telling her how much I loved it, she said "good, I'm half way through check out now!"...and, so there you bean bag chair for Mia, on it's way !!!  We love you so very much, Aunt Jackie & Uncle James !!! You're the bestest !!! :)  Ducky #3, check!

Ducky #4, is just adorable !!!  While my husband and I had always been anti "tv in the bedroom" for Mia...we never in a million years dreamed she'd be stuck in her bed for quite a while !! So, that rule has gone out the window, and we began the hunt for a small tv that she could play her DVD's on.  Once again, we didn't have to look far....Aunt MaryAnne, Uncle Gus, Aunt Pam, Uncle Robert, Aunt Debby & Uncle Ben brought her the sweetest Disney Princess TV I've ever seen !!! It actually looks like the tv is wearing a tiara !!! LOL  And, it is beyond precious !! (If my mind was working, I'd have taken a picture to show you all the amazing things she's getting....I'll make sure I do that, I promise !!!)  But, to say that we're grateful to them, is an understatement !! Mia looooooves her tv, and has already made it quite clear that "this is MY remote, Daddy...don't touch it !"..and then, she giggles !!! She's a hot mess, and she loves her Aunts & Uncles very much, as do her Daddy and I !!!

So, you see, as I said before, Mia's miracles come in all shapes and sizes...big, small, electric, bean filled...diapers, nightgowns (we love you Memaw & Poppy!!) her big, big, BIG "big girl bed" (we love you, Nana!!) and everything in between....(I feel like I'm forgetting something, and if I am, I'm going to feel AWFUL and will have to blog again....the miracles are coming in so fast and steady, I'm actually having a hard time keeping up with them !!! Praise God !!!)  But, I wanted to share them with you guys.  I want you to be able share with us first hand how God is making himself providing what is needed, and is with us every step of the way !!! I hope you'll see these things, and know that He's going to do the same things for you !!  Name your "duckies", and watch God line them up !!! ;)

We love and appreciate each and every one of you !!!
We pray for blessings and miracles for you, and as always, we thank you for being a miracle for our Mia !!!
With a Mommy's heart,

Thursday, July 14, 2011


I wanted to take a minute to introduce a couple of amazing resources to anyone and everyone who may have happened on Mia's blog looking for not just updates on our Mia (which we LOVE and appreciate), but who may also be seeking more information about hip dysplasia and support for themselves and their child !!  We don't want ANYONE to feel like they are going through this alone....we do have resources available to us...and furthermore, if you are going through this as well, WE WANT TO HEAR FROM YOU !!!  Please, take a moment to leave us a comment or message us telling us a little about you and your child, so that we can include you in our prayers by name, and also build a community with each other.  Together we can figure it all out and get through it.  There truly is strength in numbers !!! ;)

Above is the website for the International Hip Dysplasia Institute - this is an amazing place to go to learn more about dysplasia and to get some of your questions answered !!!!

The Git-R-Done Foundation - founded by Larry the Cable Guy and his wife Cara after their son, Wyatt was diagnosed with hip dysplasia.  Having no where to go for answers, and enduring the frustrations that we already know, they started this foundation to raise awareness, raise money for research and aide, and to minimize our frustrations by having someone to turn to.  They've already been a blessing to us, and we can't thank Adrian enough for being there for us, and especially for listening to the insanity which is me !!! ;)

The IHDI on Facebook - this is just a great place to go for a sense of community !!!!!!!! ;)

We hope you'll find the links/sites as useful as we have....we hope that you will support them as they support us and so many others, and again, if you're going through this, please don't try it alone.  We're here for you !

Thank you for always being there, and again, thank you for being a miracle for our Mia !!

Wednesday, July 13, 2011

Visit from July 12, 2011

Thank you all so very much for continuing to track our Mia's progress !!!!
We love and appreciate you all so much and we feel your love and prayers !!!

Yesterday's visit was "informative" if nothing else.  We met with "a" surgeon, but he isn't going to be "the" surgeon.  Since he specializes in complex "spine issues", he would prefer that Mia be seen and operated on by one who specializes in complex "hip issues"...naturally, we agreed.  It was decided that Mia would be referred to their hip "team", a team of 2 doctors who would both perform the surgery.  We do know that her surgery will be the 3rd week in August, although we do not have a definite date as of yet.  We do, however, have a date to meet with the actual surgeon, which is August 15th.  Her surgery will be sometime the following week.
Yesterday's doctor was kind enough to try to clarify a few things for us...such as surgery lasting "approx." 4 stay would be "approx." 2 days....cast time would be "approx." 6 weeks, and then she would go into a "brace" of which no real specifics were discussed.  He said that the actual surgeon would be better able to better answer these questions, which makes sense, since he'll be one doing the surgery.
Now, since this blog is very therapeutic for the frustrations that go along with this whole ugly process, and since my feelings are my own, and I'm entitled to them, I will say that I am somewhat angry at the thoughts of watching her suffer for another 5 weeks.  I'm trying desperately to be 'sensible' about the surgery, the necessity of it, how "she's on the right road", and "going to be so much better" afterwards.  Our 'heads' understand that...truly they do.  However, our 'hearts' aren't on board.  Our hearts care nothing about "sensibility" right now.  Our hearts see the pain our daughter suffers EVERY day.  Our hearts ache with her EVERY night while she cries for relief.  Our hearts don't understand the wait, and can't figure out what to do to make it better in the meantime.  We hate watching our child suffer.  We hate watching her fall down and get bruise after bruise, because her legs won't hold her up.  We hate waiting for her relief.  We hate and don't understand the 'wait'.
There is, however, one thing we do understand, and that is faith.  We understand that it takes a complete and total surrender to stand on faith.  It means, "accepting that which you cannot change, courage to change the things you can, and the wisdom to know the difference."  Faith is what helps us continue forward, knowing that God is in control, and that NOTHING escapes Him....He sees all, handles all, and is all !  And, while our hearts are troubled, we remain committed in faith, that God has this !!! He has our Mia, He has us, and He will oversee every aspect !!!!
In the meantime, we are challenged with one task...."Be Still, and know that I AM God". 
And so we will.

Thank you for letting me rant, rave and blow off a little steam.  But, most importantly, thank you for walking this with us, and reminding us that we are not alone !!
Each one of you is treasured....and we thank you so much for being a miracle for our Mia !!!

With a Mommy's heart,

Sunday, July 10, 2011

Welcome !!

Hello everyone, and welcome to the page for Mia's Miracles !

While we love our Facebook page, very much, we thought that a blog would offer us more 'space' and opportunity to include more details, and allow us to keep you more informed !

Since we are just getting this page up and running, we'll go ahead and put out a quick run down of 'where we are', and what is going on... ;)
While Mia had been complaining of leg pain for quite some time, and had been waking up in the middle of the night in absolute agony we had been led to believe they were just "growing pains" and were advised not to worry about them.  On June 27, 2011, we noticed what looked to be a 'lump' on the inside of her right knee.  Not knowing what in the world it was, and just knowing that it had to have something to do with her pain, we took her to Egleston Children's Hospital in Atlanta.  After  some x-rays and labs, we felt confident ruling out any type of cancerous growth, but her x-rays prompted for more information.  After additional x-rays of her pelvis, it was in fact discovered that Mia has Bilateral Hip Dysplasia, and would require surgery.  I can't even begin to imagine the pain our sweet girl must have been feeling for 28 mos. as she suffered with 2 dislocated hips.  Learning that she had been like this from birth certainly explained a lot of her constant fussiness, late walking, "crooked stance", and random fevers.  Our hearts are crushed to know that she's been in such pain for so long.  It explains why she would be standing still, and suddenly her little legs would just 'give way' from under her, and down she'd go.  It explains why, when she's tired, she'll take 2-3 steps, and fall down.  It explains those countless, seemingly endless nights or her being absolutely inconsolable with pain for hours, and the exhaustion she would feel the next day when the pain would ease off and she could finally rest.
As a parent, many of you already know that to watch your child suffer is the worst form of torture for yourself. 
One of my favorite little books, called 'Everyone's Way of the Cross', which is used each year for Lent has an amazing line in it, which has always touched my heart, but now resounds within my spirit.  At the Station of the Cross where Jesus meets his mother, the book talks about Our Lady seeing her child suffer and the pain she endured with Him.  (Your child does NOT suffer, that you don't suffer too!)  And, it is at this point that the line appears...."to watch the sufferings of those we love is harder than to bare our own."  This so very, very true.  Yet, it is from these words, and this Station that I try to find comfort.  I know in my heart that our Jesus' sufferings were not in vain and without value, and I don't believe that my Mia's or anyone else's ever is either.
This Tuesday, July 12, 2011 is when we will go and meet with the surgeon to find out details and arrange for the surgery.
Please know, that we draw strength from the love, support and prayers of each and everyone of you !! We include you all in our daily prayers, as well as all those who suffer, particularly the children, in any way.
I promise to update the blog as often as possible, beginning with Tuesday night or Wednesday morning to fill you all in with the details we've learned.

Thank you all so very much for walking this road with us, each one of you is a blessing, and
thank you for being a miracle for Mia !! ;)

Mia's Mommy & Daddy