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Old 07-30-2012, 06:22 AM   #61
DMGeurts
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WOW Amber!!! How in the world am I supposed to pick a favorite outfit/picture/smile/memory out of all those posts you did last night? I loved them all - and the happiness on all of your faces, just priceless!!!

And, as a side note, I love all the customs you did for yourself - I wish I could have done more for our trip... Next time!

D~
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Old 07-30-2012, 10:43 PM   #62
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Thank you all so much! Savannah has had many great days this summer but we are also seeing many days where she hits a wall and needs to sleep all day long. Sometimes for days. And she is periodically running fevers of around 101-102. On these days she refuses to eat anything but we can still get her to drink and I've been able to keep her blood sugar levels okay which is something that last summer we struggled with as she would go down into the 20s. She is also dealing with her usual GI issues of awful diarrhea and malabsorption. This latest stretch has been going on since midway through our trip to Rhode Island. We have an appointment with her awesome pediatrician on Friday. I plan to see if she can be the one who signs off on Savannah's Make A Wish eligibility forms. I don't think her mito specialist has responded. I needed to make an appointment for Savannah with her recently and her *first* available was October 4th. I think she's probably just too busy. So if her pediatrician can do it then I will call Make A Wish and give them her contact info. She has after all been the gate keeper for ALL of Savannah's specialists and been on this journey with us for 7 years now! She remembers things about my kids even I don't remember! Anyway, I hope to get some info from Make A Wish either way because Savannah's 4th birthday is Thursday and her Disney Princess themed birthday party "Savannah's Bibbity Bobbity Birthday Ball" is on Saturday...it would be the perfect time and place to tell her if she is going to get to make her wish.
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Old 07-31-2012, 01:18 AM   #63
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I've seen your posts on Facebook stating that you were starting this PTR. I finally got a chance to sit down and read it! I hope that you hear that Savannah's Wish is granted soon! I can't wait to read the rest. Give Savannah's Ped a hug for me and tell her that we miss her!
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Old 07-31-2012, 08:18 AM   #64
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Rebekah actually started off the summer around 44 pounds...for her this was awesome. Now she is barley at 37. She lost 2 pounds on our cruise...who does that! I am right there with ya on the sleep thing. Hopefully Dr. Queen can sign the needed papers and we can get the party going! God Bless.

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Old 07-31-2012, 09:49 AM   #65
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I am totally caught up on your PTR. Your kiddos are just adorable and I love seeing their smiles at Disney
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Old 07-31-2012, 01:05 PM   #66
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Wishing, hoping and praying you hear something in time for Savannah's Bibbity Bobbity Birthday Ball! I hope she enjoys herself!
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Old 08-01-2012, 06:00 PM   #67
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What adorable kids! I love all the matching outfits too. What a great creative idea! That would be wonderful if sweet Savannah found out she gets her wish in time for her birthday!

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Old 08-01-2012, 09:00 PM   #68
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Savannah's Fourth Birthday --Looking Back

This time four years ago I was in labor with Savannah. Reminiscing about how little she once was and how very far she has come...

Savannah's Story

Savannah's Second Amazing Year

Savannah's Third Incredible Year

And a new video SAVANNAH'S FOURTH FABULOUS YEAR
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Old 08-02-2012, 08:11 AM   #69
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Quote:
Originally Posted by DMGeurts View Post
WOW Amber!!! How in the world am I supposed to pick a favorite outfit/picture/smile/memory out of all those posts you did last night? I loved them all - and the happiness on all of your faces, just priceless!!!

And, as a side note, I love all the customs you did for yourself - I wish I could have done more for our trip... Next time!

D~
Thank you D~. It was a great outlet to sew....free therapy. Well not really free but definetly a sanity saver!

Quote:
Originally Posted by hjohnson6 View Post
I've seen your posts on Facebook stating that you were starting this PTR. I finally got a chance to sit down and read it! I hope that you hear that Savannah's Wish is granted soon! I can't wait to read the rest. Give Savannah's Ped a hug for me and tell her that we miss her!
Thanks Heather J! I will tell deliver your message to Dr. Q.

Quote:
Originally Posted by pigget74 View Post
Rebekah actually started off the summer around 44 pounds...for her this was awesome. Now she is barley at 37. She lost 2 pounds on our cruise...who does that! I am right there with ya on the sleep thing. Hopefully Dr. Queen can sign the needed papers and we can get the party going! God Bless.

Heather
Heather A, I will keep praying for Miss Rebekah. Let me know if you guys need to come over for a doctors visit. You are welcome to stay with us.

Quote:
Originally Posted by cogero View Post
I am totally caught up on your PTR. Your kiddos are just adorable and I love seeing their smiles at Disney
Thank you!

Quote:
Originally Posted by carebearkidney View Post
Wishing, hoping and praying you hear something in time for Savannah's Bibbity Bobbity Birthday Ball! I hope she enjoys herself!

Quote:
Originally Posted by Lilfoot93 View Post
What adorable kids! I love all the matching outfits too. What a great creative idea! That would be wonderful if sweet Savannah found out she gets her wish in time for her birthday!

Jackie
Thank ya'll too! I called yesterday and left a message with MAW but no one called me back. Will try again today as it would be great to tell her for her birthday
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Old 08-02-2012, 08:28 AM   #70
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Savannah's Birthday Letter and Montage

Today is Savannah's 4th Birthday! Every year for my each of my children's birthdays I write them a letter and make them a video montage with photos from their previous year of life. I thought it would be appropriate to post Savannah's birthday letter and video here ...




Sweet Savannah girl, you turn four today. Four fabulous years old.

I’m not sure how that is even possible.

As I sit and write this letter to you, I feel a lump in my throat, tears stinging the back of my eyes and I wonder if the space in my ribcage has enough room to contain my love for you.I’m remembering the day you were born; It was an incredible day, one of the best of my life, and I remember every moment like it had happened just a second ago. Before you were born, I felt like I knew you already, and when you were finally here, I did. I knew you; I could see you, you were my cells, my heart, my light, the very breath in my body. Born three weeks before your due date, at 6 pounds 7 ounces, you were my smallest baby , yet your presence in my life has been enormous.

That August morning I nursed you snuggled against my chest soaking up your sweet face, your impossibly long lashes, your perfect little mouth, your small fingers and ten tiny toes. I held you close, breathed in that sweet newborn scent and just let the happy tears flow. My perfect package of heart wrenching charms, my baby girl. You slayed me from the start Savannah-- I fell completely, head-over-heels in love with you the instant I met you, because to know you, is to love you.

I know I say this with every letter but it never ceases to confound me how four whole years could have slipped away since those first moments together. Of course what I didn’t know then was the kind of change you'd bring into my life and my experience of motherhood. It was a change so drastic it rocked my world and shook my very core. And now, just look how far you have come.Just look at the lovely, lively, little lady you have turned into. I can only say that I have been more amazed by you as you have grown. The awe has never worn off, each day has brought more...More amazement in the unfolding gift of who you are, more amazement that God in His graciousness trusted me with the privilege of being your mother.

You, My Love, are this bubbly beautiful, silly, sunny little pixie of a thing who seeps life and joy and a spirit of graciousness into our family. You are spirited, independent, affectionate, bright, boisterous and, at times, a total stinker. I love these things about you, these things that make you who you are, these things that make you so very “Savannah”. You are my little baby-loving, art-creating, memory-making, card crafting, oh-so-dramatic, kind, quirky, crazy-smart, wild, wonderful, precious daughter!

You are such a piece of work! The things you say and do are positively nutty. You don’t even try to entertain us or make us laugh. You are just you, and your levity is contagious. You play for joy and I find myself lost in your world of make believe listening to your energetic stories of princesses, fairies and alligators- a perfect blend of sparkle and spunk. Much like you. You carry on elaborate conversations on your “cell phone” and you and Siennah play mommy so often that I cannot even tell if you are talking to me or her half the time. You take your dramatic roles quite seriously. May you hold onto your glorious imagination and incredible tu-tu dances for the rest of your life.

Your favorite color is pink but sometimes, purple. You color like no child I have ever seen and never go outside of the lines. You love music and dancing and clothes. Everywhere we go you compliment people on their “nice shirt” or “pretty shoes.” You are such a fashionista and it drives me slightly crazy. You totally know how to rock a tiara and sword fight at the same time. You are one of a kind, my dearest sweetest most colorful Savannah.

I love your every expression and gesture. When you speak each muscle in your body is on stage. Your eyes grow double in size. Your arms navigate your words through sweeps and claps and pointing. You are so incredibly dramatic. It's simply fascinating. And you have a way of articulating that is all your own. It’s some quirky cross between a Jersey-Boston-British-Carolina-Pee Wee Herman accent. And I am in absolutely no hurry to correct your misuse of pronouns. Your consistent us of “we” instead “our” and ‘us.” Or the way your switch “am are” for “I am.”

These little bits of your babyhood will probably disappear this year and I find myself wanting to write down everything you say, record every conversation we have, photograph your every moment; I want to freeze time. That’s the blessed curse of being a parent; that feeling of living in a bittersweet space between the ache of the memories of baby and childhood, and the excitement for the next milestone, the next stage of your evolution.

I look at you and I simply can not believe my eyes at how much you have grown. For so long we have fought for every pound and inch of you and this year your legs stretched out like a piece of laffy taffy--you are my little willow of a girl with lithe limbs and golden curls that now hang to your shoulders. But you still have those same cheeks like apples, same dimpled smile, The one that when paired with your impish grin makes it impossible to keep a straight face when disciplining you. Then there are those those big brown eyes that only just settled into their color this year. Perfection.

Yep, I love everything about you no matter what I may say under clenched teeth and furrowed brow as I clean up your umpteenth mess of the day. You have certainly become more mischievous. I can now almost see the wheels turning in your brain as you think through whatever your next naughty activity will be. You are brazen, speak your mind. You want what you want, when you want it. This has led to no shortage of epic, and I mean EPIC battles with myself and your siblings. But you three also delight in each other. The fierce love and loyalty you share runs deep as the oceans. It is authentic and powerful, immeasurable and magical. It is a beauty to behold. Their world, just like mine and Daddy’s would not be complete without you. You're always there with a big engulfing hug or a kiss to cheer someone up. You heal with your heart, you light with laughter, you spread joy like a little trail of fairy dust behind you. Thank you for loving so good, so big, so pure.

You are delicate and fragile as a butterfly yet bold and resilient, independent, strong, spirited, dare I say, stubborn...but if I had to pick just one word that describes you at 4 years old it would be…Precocious. Followed very closely by funny because you my girl really are a riot. The things you say and do keep us in stitches. You don’t even try to be funny or make us laugh. You are just you, and your levity is contagious. You have the most infectious laugh so forgive me if I cannot stop tickling you just to hear it over and over again. It is truly music to my ears. It is as if every giggle stamps my heart with a little piece of you. You illuminate every room you enter with the happiness you radiate. You don’t just walk into the room---you saunter. With one hand on your hip and a purse slung over your shoulder.

Random mothers at preschool stop to ask me, "Is she yours? She's just so... cute." Strangers peer out of their car windows and smile when we make our weekly pilgrimage to Target. At the grocery store elderly shoppers stop to observe you singing in the aisles, your repertoire includes everything from “Soundie” Music and Disney Classics to Adele. You’re the life of the party dear girl and I completely admire your gumption.

Everything you do, you do with copious amounts of rainbows sashaying around you. You even handle the hard days with such grace. You’ve met every challenge great and small with a wellspring of courage and determination. I am thoroughly in awe of your grit. Your tenacious spirit. Your bravery. Your spunk! May you keep that wonder and that fearlessness that inspires you to keep trying.

You finally understand that you have Mitochondrial Disease. And sometimes it brings you down. But it never defines who you are. Through you, and with you, we have learned to savor and enjoy each day we have been given, as we truly don't know what may lie ahead of us. I am constantly amazed at how someone so little can impart such big lessons about life, love, and God's incredible grace.



I can’t begin to describe to you in words that will cling long enough to your ears how much joy you have brought to my life. More than I ever dreamed possible. The truth is Savannah we would not be the family we are today without you! From the moment you entered our life, you have made it better. Every dream I ever had my entire life about what having a daughter would be like just can't compare with the greatness you turned out to be.Being your Mom is not just diaper changes and time-outs now. It's wanting to explain the world to you. To teach you kindness. To tell you why things happen in a way that makes you want to be good and loving. To show you by example that your confidence is your power...that the world is your oyster and you are its pearl.

I have so much to teach you, to share with you, to show you, that a lifetime doesn’t seem enough.I wish for you to live a life full of beauty, love, peace and joy. I will do everything within my means to ensure this happens. I look forward to watching you grow and change from the sweet little lady you are today into a thoughtful, intelligent woman.

I have no wish for this change to happen quickly!! There is just so much about the girl you are today that I want to etch into my soul forever. I feel like I can’t hold you close enough. In fact, each night, when I put you to sleep, I look at you and wish the time wouldn’t go so fast, that I could live in slow motion and linger through your childhood a little longer. Daily, I plea for you to please stop growing up.You are so used to hearing me say this selfish phrase that you just flash me that dimpled smile, shake your head and very matter of factly reply, “Yes Mamma! I want to grow up for I could get married!”

And oh what a wedding you have planned out! Once again you tell me all about the white dress you will have and the high heel Jimmy Choos, your long veil and spar-ka-lee tiara. How you will get married at Disneyworld with everyone you love there.

And oh how I clamor for that day too. So alright my girl, go ahead and grow up-- If you must. I know you must. I feel fortunate to spend these years in your company, loving you and helping you learn. Teaching you to believe in yourself as I believe in you. To never let go of your own sense of what’s right, what is fair and what is real – Most of all don’t lose your sense of wonder. You have an amazing way of knowing about the world even as you have much left to learn about it. This is what you teach me – how to live in earnest.

There is absolutely nothing you can’t do. So dream big. Dream colorful. Dream magic. Dream beyond the stars. Everything big starts as something small. Have Faith. Leap high and go for it! Don’t worry about the little things. Know that dancing will almost always make a girl feel better – so feel free to twirl for happiness when you are feeling down. I will be happy to hold your hands and spin with you. Never forget how to let go and enjoy a good spin! And remember, I will always be here for you, cheering you on. Your biggest fan.




God gave me three beautiful, amazing children and you, the baby we were meant to have..., I know you were hand picked for us, for the world. For you are going to do great things, my girl.Savannah - I hope you never outgrow that special little something that makes you sparkle. And on this day, your birthday, I celebrate you. I hope that you know how wonderful you are, how lucky I am to be your mommy and what you mean to me.

There’s only one way, to say those three words FOUR you, so that’s what I’ll do…
I love you.
I love you.
I love you.


Mommy


Savannah's 4th Fabulous Year Video
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Old 08-05-2012, 02:27 PM   #71
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What an amazing and beautiful family you have! I love the outfits!
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Old 08-07-2012, 03:06 PM   #72
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What an amazing and beautiful family you have! I love the outfits!
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Thanks Elisha!
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Old 08-07-2012, 03:31 PM   #73
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Phone Call to Make A Wish and Appointment with Ped

I called our Make A Wish Chapter up on Savannah's birthday. As I had mentioned in my previous post we had really been hoping to be able to tell her about her wish for her birthday. I didn't want to seem pushy I just wanted to find out what the holdup is and see what we could do to help. As I suspected her Mitochondrial Disease specialist, Dr. C, in Chapel Hill has not filled out the eligibility paper-work. I had a feeling this might be the case as I needed to make an appointment recently for Savannah with her and the first available Dr. C had was October 4th. We are very limited in our choices in the metabolic genetics field and she is always very busy and in demand.

So I asked the gal at Make A Wish if it was okay to go through her Pediatrician Dr. Q instead and they said that it surely was. I went ahead and provided them with her contact info. We saw Dr. Q the next day for an appointment for Savannah. I should mention that we pink sparkly heart adore our pediatrician. She has walked this journey with us from day one and I can't imagine having done it without her. At this appointment we found that Savannah's height is actually on the growth chart for the first time! She's 37 3/4 inches! This is exciting! I wonder if she will be tall enough to do some of the rides like Soarin’ and Test Track that she's always missed out on by being such a peanut.

Dr. Q is every bit excited about starting the wish process for Savannah as we are. She said she would fill out whatever paperwork was needed and agreed that it's a great time for Savannah to do this. Savannah for her part, told Dr. Q ALL ABOUT her Princess Wedding, shoes, tiara, dress....the works. I just hope now that our Chapter, which is understaffed at the moment is able to get the paperwork faxed to her soon so we can get the ball rolling. We are coming up fast on the 6 month ADR date and window for DVC reservations. We'd like to be able to book everything on our part as soon as possible.

We made some tweaks to Savannah's medications because of her GI issues. And we also decided that the time has finally come to get her a wheel chair. I've always been somewhat reticent about interventions like this. Savannah fatigues easily and asks to be carried when she is tired but she is just getting too big for us to continue to do so. We agreed that it would be best for her to get used to using a chair before she starts Kindergarten. Of course we'll see if we can't find something pink that will meet her needs.

Here's Savannah with our lovely Dr. Q (who had just given Savannah a blue lolli-pop) at her recent appointment. I can't pick a my favorite...they all make me smile...





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Old 08-07-2012, 04:03 PM   #74
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Oh Amber... I coudn't even finish reading your letter to Savannah - tears were just streaming down my face. I think that every mother can relate to exactly what you said. Just an amazingly beautiful letter.

And I am so happy that Dr. Q will be getting the Wish ball rolling... Waiting with anxious anticipation to hear the great news!

D~
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Old 08-09-2012, 07:48 AM   #75
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Savannah's Bibbity Bobbity Birthday Ball

I might have mentioned that Savannah at four is into Disney princesses, weddings and pink. And tutus. And tiaras. And pretty much all things glamorous and girly! So to celebrate Savannah’s fourth fabulous birthday we planned a purple-and-pink-tulle-and-sparkles-tiaras-and flowers-oh-so-very Disney Bibbity Bobbity Birthday Ball.

Only problem was that 48 hours before the grand event I came down with a demon summer flu virus. It looked like I was going to have to cancel Savannah’s birthday party. Canceling would have been more sensible than trying to get things ready in the half a day I had left after Savannah's doctor’s appointment …especially since I was running on very little calories that left me with very little energy.

But canceling would also mean breaking the heart of my sweet girl. So cancel no, but simplify—absolutely.

Thanks to the help of my amazing Mother-in-Law who kept the kids overnight, I rallied and revised our game plan.

Step one: Reconstitute my idea of “clean”. Get rid of toilet bowl rust stains and clean the counters from peanut butter and jelly smears the kids left behind making sandwiches for themselves while I was sick but forget about mopping the floors.

Step two: Food that involves no preparation or cooking. I ordered a cake from Target and we picked up hot and ready pizzas from Little Caesar’s. My boxes of Betty Croker mix will fulfill their baked destiny another day.

Step three: Decorations. I set up the frame for a canopy tent in our play room and decorated it with dangly Christmas lights tulle and silk flowers. I made pendant banners from scrap book paper and ran them through my laminating machine.

Step four: Activities. I set up four stations for the little girls to rotate through, there was Princess Polish, Her Majesty’s Make-Up and Tattoos, Her Royal Highness Hair Salon where I perfected the 30 second “sock bun” and Castle Couture where each princess received a tiara and tulle tutu I had made thankfully weeks before her party… Once all of the girl’s magical make-overs were complete the Princesses danced until Brian yelled “Midnight” and they had to freeze.

And that my friends was it.

It may not have been as elaborate and original as other parties I've crafted up but it was perfect in its own way. Perfect for my four-year-old. Dare I say all the little ladies had a great time! I loved watching them interacting, sharing, clinking their purple plastic goblets together and saying “cheers”. I loved seeing them twirl in their tutus and crowd around Savannah with enthusiasm to see her open their gifts. I loved hearing them laugh and squeal and knowing that we will be doing this for a very long time--taking turns celebrating every year of each of these sweet spirits. It really is magic.

With no further ado...The photos from Savannah's Bibbity Bobbity Birthday Ball!

















































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