Wednesday, December 19, 2012

Vials of Hope

29 days later.

The 9th Floor.

Duane, myself, and two Vials of Hope filled with blood drawn the night before from our very own Superhero.

Two vials drawn immediately prior to his RSV shot. After which he cried. With sound. And shed his first real tear.

A real tear.

We've had several of these moments over the past week. Moments highlighting changes in MC that have been too significant to ignore.

This was my son two weeks ago.

And this is him today.

We've gone from planning a funeral to planning Christmas, from remaining bedside  to sneaking out for dinners, and perhaps, the biggest adjustment of all, from vowing that we would refrain from returning to the hospital, to heading through those doors once more.

Is it simply a reprieve from the horror of late? A true Christmas miracle?  Or the story of one incredible father who never ever gave up?

I think it'd be fair to say that it's all of the above.

For months, Duane has been researching vitamin dependent seizures, the symptoms and EEG patterns of which mimic Ohtahara Syndrome. Two weeks ago, when MC was in critical condition, Duane pushed to have vitamin b6 added to his regimen of over 15 daily medications. At the time, we had no choice but to continue to increase the dosages of his other medications, which we knew could leave us in a predicament, if by some miracle we saw an improvement in MC.

Which we did. A dramatic improvement. So dramatic that it has left us wondering whether the b6, was, in fact, the cause. 

After a week of continued improvement, we just couldn't ignore it any longer. On Friday night at 11 p.m., I fired off a desperate email to an old client who I knew worked in genetics at our hospital, and by 9 a.m. Saturday morning, a team of geneticists were arranging an immediate appointment for us in conjunction with our neurologist.


It was an incredibly productive meeting that resulted in: 1) further genetic testing to pinpoint a single gene associated with pyridoxine-dependent seizures, 2) an epileptic panel test to explore other genetic causes, 3) a doubling of MC's current b6 dose.

And while numbers 1 and 2 could be helpful, it's the reaction to number 3 that will tell us if we're headed in the right direction.

You see, one of the realities of using an anonymous egg donor and a gestational carrier in India is that we'll never have access to the medical history of our missing link, nor can we answer all the relevant questions regarding the pregnancy and birth.

We could beat ourselves up about it, or we could recognize that these are the realities we signed up for, and we wouldn't have our children otherwise. We've always done the latter, which makes delving into the genetics issues for possible clues but never complete answers, a difficult but necessary path.

Even armed with such information, however, we are dealing with incredibly rare diseases-- Pyridoxine-dependent Epilepsy being even more rare than Ohtahara Syndrome-- which means that we could still find ourselves left scratching our heads should MC's testing differ from that of the the very small population of children who have been diagnosed with these conditions.

Which is why we'll remain focused on treatment, the beauty of which is that, unlike trialing and erroring medication dosages, there is comparatively very low risk in doing the same with vitamins.

As for now, we are just basking in the enjoyment that is a rested and engaged MC, two incredibly giddy parents and one crawling Princess (I know, she totally deserves her own post) who will all be celebrating their very first Christmas TOGETHER.

81 comments:

  1. Praying, Praying Praying!What a handsome fella! Southern Nana

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    1. Truly appreciate the prayers. This week has solidified my belief in miracles:)

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  2. Wow, beyond wow, really, I'm crying again!! I'm so incredibly happy that you are having a lovely time with your family at present - a Christmas gift to top all others. MC looks so 'present' in today's photos - you must be beyond thrilled. And as for Princess crawling, already, amazing, she'll be running rings around you all before you know it.
    Much love, Bridg

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    1. The most incredible gift ever. (Cry away. Oddly enough, I've done more of it this past week than I have the past 5 months. Happy tears, of course!)

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  3. Wow. Wow. Wow. This is amazing! I am THRILLED for you guys!

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  4. Joy the mother-loving world....Christmas is a magical time indeed! xo

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  5. Wow. Amazing.

    Happy tears from me too. Hoping you get wonderful answers.

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  6. Such positive wonderful news! Yay! I still want to see you family holiday photo.....I can just see princess in a velvet dress!Great to be moving forward.....emmaxo

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  7. Pulling for a miracle! I have been following your journey since your sweet babies were born and I am amazed by your strength. I hope to be a mother like you someday

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  8. Wow! I'm thrilled for all of you! So happy for the present of MC's presence. He looks wonderful! Saying prayers!!

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  9. Wow! I'm thrilled for all of you! So happy for the present of MC's presence. He looks wonderful! Saying prayers!!

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  10. I'm not much of a blog commenter, BUT, Oh my god...what a different baby boy! This is an amazing transformation....that last picture is so very different to the ones of the last few weeks. Your precious little boy is looking so bright and and rosy! We are so, so happy to see some relief coming your way, and doubly so at Christmas time. Your beautiful family really deserves this break.
    Lots of love from two Down Under blog lurkers....
    ((((hugs))))

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  11. Oh my goodness. Now the tears won't stop. I have been checking the blog everyday with fear in my heart. I cannot believe this. Do those arms have some chub on them?? Beautiful, beautiful baby boy. We are cheering you on every minute!!! You are so loved! That last picture says it all. HANDSOME! Thankful. Overwhelmed. Hoping hoping hoping.

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  12. OMG!! That's so amazing!! Agree that yes, he looks like he's had an amazing transformation! Can't wait to hear more progress reports. And I Hope you guys have a wonderful Christmas!

    Also, very much looking forward to Scarlet's post. :-D

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  13. I rarely comment but I've followed your blog for a long time and lifted up both MC and Princess in my prayers night after night. Your sweet boy has incredible cheeks and whenever anyone comments on my own baby boy's cheeks I think of MC. I'll be praying those 2 vials bring answers and continued improvement. What a beautiful Christmas miracle and how special for you 4 to celebrate together! Much love, Lisa in Denver

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  14. There is no doubt that there is a difference in MC. Hoping the exploring of what that could be from provides you with a new positive road to go on. Christmas brings miracles in ways we sometimes don't see but this one is definitely in the photos.

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  15. I am so hopeful for you! What a dramatic change! I am so happy for him! For you!

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  16. Wow, wonderful news!!! So happy for you!

    MG

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  17. I've read and re-read this post and I have to say, I cannot process the medical details, but I do "get" the happy point. That new alertness cannot be coincidence. Wow...just wow! This boy is going to make the medical journals one way or another! Best of luck to you. We all want to see a miracle. Way to go, Duane!

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  18. I think MC is growing into his cheeks and his eyes are gorgeous. I thrilled by the hope of this post and the hope and faith and determination of his parents to find answers and miracles.
    Delighted to hear Miss Scarlett is doing so well and getting into her crawl. Shall look for more beautiful pictures of her.
    Constantly thinking of you and sending loving wishes! May you have a Christmas of wonder and joy.
    O.Ca G.

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  19. My goodness-I feared your silence was for a terrible reason-but it was for a magnificent reason!! He literally looks like a different baby. SO many wishes and prayers that you're finally, finally seeing true improvement!! SO MUCH HOPE! <3 from San Diego, Emily

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  20. He looks so much more alert. I'm so happy to hear you are working towards a solution. Amazing news, congratulations! X x x

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  21. HOLY MOLY! He looks like he got an Oprah makeover and a week at a spa! This is such incredible news I nearly fell outta my chair at work. I'm so happy for ya'll in his improvement and hope that the testing gives some clearer answers and direction. Have a wonderful Christmas!

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  22. Praying! Merry merry christmas!

    Kathrin (Germany)

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  23. He looks like a different little boy! Our naturopath had us taking really high vitamin c drips (once a week) and vit b injections for our infertility, which did not do much for us however she was also doing it for cancer patients with outstanding results. Good luck I hope the news is all good! xo

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  24. Amazing update, I am so so so incredibly happy to read this. And my husband, that has been hearing about your family from me, is also thrilled. We both hope this is just the beginning. xo

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  25. He looks amazing and it is nothing short of heartwarming and happy-tear-inducing to think of the 4 of you getting to spend Christmas together. I can't think of anyone in the world I'd be happier to hear such good news from right now. Continuing to send thoughts and prayers your way.

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  26. What an incredible change MC. You are one really strong fighter. I honestly hope that the B6 is the problem, and you can live as one happy family for years to come. Seeing MC and Princess together at Christmas will be the best joy you could ever have. I am no medical expert but MC looks to have turned the corner and is rapidly improving. My heart and well wishes go out to you and the whole family.

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  27. Ohhhhhh happy day! And yet AGAIN you two prove that you're the most dedicated, amazing parents in the world, and that those little darling babies were meant to always be in your care. I hope to hear even more great news during the New Year and beyond!

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  28. Thats awesome new, You go MC show them what you got. you know your mommy and daddy loves you so much and show them you are not going anywhere without a fight. Prayers for you all

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  29. love, love, love this post. i'm all smiles and tears. thanks for sharing and fingers crossed you get some good news from those vials of hope. merry christmas!

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  30. Fantastic news! He looks so different. What beautiful eyes he has.
    I take huge doses of B6 to treat the blood condition Pyroluria. It is amazing what a vitamin can do!

    Love and hugs for Christmas. xxx Zoe

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  31. This is the BEST Christmas gift I could get! Tons of love to your little MC!

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  32. Xmas miracle......or dadda miracle! Those of us who fall into the fertility challenged category know just how many hours we spent trawling the Internet for solutions to our "problem". We do it too, when we finally become parents to work out if the things our bubbas are doing is "normal"! Afterall, if not for the Internet how would we have found out about surrogacy, let alone that our bodies are seeing our embryos as foreign objects to do away with. To hear that the research Duane has done to discover that vit b may help mc is no surprise to those of us who cannot just "have a baby". Nor is it any surprise to those who follow your blog that you guys are trying to find anything that may give your little one hope. Go for it. Try the oddest things. Try the things the doctors tell you is witch doctoring. Try the things the doctors say is giving you false hope. After all many of us wouldn't even be parents if we didn't try the try these sort of things. So, so, so happy to hear that Xmas on ur home will be a happy one.

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  33. Yay! That is fantastic news. I believe in the power of vitamins.

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  34. Amazing!! I've been starting to get worried whenever you don't update for awhile... this is not what I was expecting to read. This is wonderful news, though! How did Duane even know to research such a rare disease? And how lucky that you knew someone in genetics!

    I love the "handsome" shirt. and please, post a picture of Princess crawling, too. :)

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  35. AHHHHHH!!!!! so very happy to read this post. I've been following you for awhile and have been saying tons of prayers for a miracle for your family! Have a very Merry Christmas!

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  36. AHHHHHH!!!!! so very happy to read this post. I've been following you for awhile and have been saying tons of prayers for a miracle for your family! Have a very Merry Christmas!

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  37. Oh wow wow wow! I can't even describe how happy I am for you and your family. We are all praying for MC - he is truly a miracle.

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  38. This is amazing news!!! MC is such a strong & handsome little man. Goes to show your family's determination.
    Merry Christmas to you guys!

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  39. Way to go, Tiny Tim!! I mean... Tiny MC!!

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  40. Hard to believe! What a luck, seeing him so rosy and so so relaxed. I am so happy for the 4 of you.
    "We all want to see a miracle", as Steph said. And we want to see and read from your growing princess, too :-)
    Even if this should be for Christmas only - then it's for YOUR family Christmas!!!!
    Love, Margrit

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  41. I'm speechless at the difference in the pictures. I am so thrilled for you. I know I am just another random person rooting and praying for your family, but this news really brings me to tears. Merry Christmas indeed.

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  42. You four put sparkle and joy back into December for many this year. Prayers and constant thoughts continue. From around the world we are so grateful and renewed by your wondrous post; your grit and determination, and the amazing strength of the human spirit.
    OCaG

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  43. ..and if the tests come positive, there's the terrifying possibility of other affected babies out there somewhere? Or is it suspected to be a one-in-a-million mutation? Your book is turning into a mystery novel! But so happy and excited for you all.

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  44. So incredibly happy to read this update!!! You all have been heavy on my heart and in my prayers! A wonderful change in MC and a blessed Christmas indeed!!!

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  45. Way to go, MC !!! Endless thoughts and prayers for you all. Merry Christmas!

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  46. My heart is filled right now. Have a VERY MERRY and BLESSED Christmas.

    Together.

    Thinking of you always.

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  47. Add my name to the list of joyfully sobbing fans of Master Cheeks. This is the most beautiful news. Merry, merry Christmas, Bernadette. I know this post is the best gift I got this year. And let's not forget a huge whoop for the crawling Princess!

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  48. Add my name to the list of joyfully sobbing fans of Master Cheeks. This is the most beautiful news. Merry, merry Christmas, Bernadette. I know this post is the best gift I got this year. And let's not forget a huge whoop for the crawling Princess!

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  49. Such an amazing post of change. May those vials have some Christmas magic and bring you answers that can help keep MC looking as alert as he does in those photos. Wish you all a very Merry Christmas with joy in your hearts.

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  50. This is incredible! His eyes are so focused and bright in the second picture--truly amazing. I hope you have a wonderful, wonderful Christmas together. You all deserve it. (oh, and his hair! Love love love!)

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  51. Oh wow. I can't stop crying. I had been checking everyday, fearing a heart wrenching post was on the horizon. This is fantastic. Look at him! He looks 1000% better! What miracle. I'll be hoping and praying that he continues to improve and you find some helpful answers.

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  52. As I write this comment tears are streaming down my cheeks non stop. Most of all thanks to the Lord for identifying you and Duane as parents to MC. With all the challenges he was to face from birth, the Lord knew that with you he would get the love and dedication to overcome all.

    Just thinking about your last two posts and how you chose to follow your instincts, which I believe was the Lord's way of guiding you. The above pictures of such an awake baby boy are so inspiring. I hope that you and Duane realise that you are the chosen ones, your strength, love and determination will help save so many lives and marriages. You are really special. Keep following your instincts, the Lord gave parents that gift for a reason. A Merry Christmas to you all.

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  53. He is so adorable. Prayers for your family

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  54. he looks really, really, so much better. i mean, hello, even the pictures that you share of him when he is not doing so well, he is still an adorable little munchkin... but these ones really make him look like a full-of-life chub-meister. he is totally huggable!

    how unbelievable and really, so hard to describe how excited i am to see this turn of events for MC! just to have a reprieve from where he was, for me, is such a relief! each day that he feels good is such a blessing! and to think you have has a *series* of good days all in a row makes me have tears of joy, for your whole family.

    b-6?! i really hope that this is what is making him feel better. that, and all that pure potent LOVE that you shower onto him each and every second... that's the ticket.

    i hipe the next few days are wonderful for your family over the holidays. take lots of pics!

    congratulations on the crawling milestone with ms.princess! big girl!

    one last thing, i hope that the clinic who provided your anon. donor egg can keep aware if there are any genetic issues that turn out to be related to the donor... seems important for her to know.

    lots of love to MC! thanks for the update!

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  55. This is such great news . Mc is such a fighter and he has the best parents and sister . Merry Christmas to your family .

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  56. Just thrilled for you. What an amazing difference in those photographs, despite featuring the same beautiful boy.

    Rested and engaged MC.
    Crawling (!) Princess.

    Giddy (persistent, admirable and loving) parents.

    Happy Christmas to you all. Enjoy xoxo

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  57. A Christmas Miracle for sure! There's nothing more powerful than an intelligent, educated, motivated parent who knows how to find information! Yay Duane and God Bless all of you!
    Merriest Christmas Ever!
    Dixie

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  58. Wow!!We are so thrilled to read such good and encouraging news about Hayden!!He is just an amazing little boy!!Great to hear that Scarlett is busy crawling and before you know it she will be running around you all!!Sending lots of hugs and kisses.Wishing you all a very merry christmas and a healthy new year!!
    Kathy

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  59. So incredibly happy to read this post... here's praying for a true Christmas miracle indeed!

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  60. Merry Christmas Bernadette, Duane, Scarlett and Hayden! There is nothing better than hope!!! Hayden looks amazingly better, here's to hope, and the power of love xxx

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  61. Bernadette, I am crying reading your post. I do believe in miracles and your little Hayden looks remarkably different and stronger. His parents deserve all the happiness in the world and I hope this treatment continues to help Master Cheeks! Have a lovely lovely Christmas. Us parents in India re thinking of you and will toast to Hayden on Christmas day as well as saying a prayer xxxxx mel

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  62. This is the best news ever and really does give some amazing hope. MC looks so very handsome and focussed. Well done Mummy and Daddy and Princess for crawling. Love to you all this Christmas. X

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  63. B, you have remained in our thoughts and prayers and i am so delighted to see how well MC is looking.
    I believe we make our own miracles and Duane is evidence of this, enjoy every moment as a family,
    Wishing you lots of joy and laugher

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  64. ahh bless MC with his little cheeky chops and spiky hair, he looks sooo cute! way to got little man, we are routing for you! wishing you guys a very merry xmas x

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  65. I have only been reading your blog for a little while, but I am constantly amazed by you and your family. You stay as up-beat as possible and fight so hard for your family. I wish you all the best and hope that you can find an answer for MC. I am thinking of you and hoping for the best!! - Suzanne

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  66. Bernadette, I always check you blog and when I had not seen a recent post, I got worried. Usually, that means something bad has happened. But this post. Oh my. I wasn't expecting this. It brought tears to my eyes. I have never met you or MC but I think of you guy often and finally seeing some good news makes me so incredibily happy. Thanks you and you and your family will continue to be in my prayers. Kelly

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  67. The second photo looks as if he is still ticked off about that RSV shot! How ironic that a cry and a tear is so joyfully received, it means the neurons are connecting as they should. Amazing and wonderful! Please keep us posted as to test results. If numbers count for anything, this little guy sure has a lot of people pulling for him.

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  68. **Tears**
    What great news! Praying for continued success! Merry Christmas!

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  69. What an incredible, wonderful development. Yes, there are still steps needed to understand what is going on, but it does appear, as you said, that the B6 is making a difference for your son. How fortunate, too, that there is little risk in using vitamins to treat him.

    I kind of understand how profound this is from my own experience. Ten years ago, my mother was in coma, with only one reflex left and expected to die in hours or days. My sister and I did research and insisted that the doctor try a treatment she had previously refused (hemodialysis). After the first treatment, my mother's reflexes returned; after 3 days of treatment she was awake; and in a month she was back home. On some level, we saved my mother's life.

    I truly hope it will be the same for you. This is beautiful news and you have all of us around the world cheering for you and for the indomitable MC.

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  70. Hearts around the world are holding you with joy and prayer and hope. Wishing your family and all your supporters and readers and helpers and believers a wonderful Christmas and a new year of good news, more miracle babies for our world, much laughter, and lots of pictures for those who cannot be present in real time.

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    1. So so happy for the four of you! Hoping that this is just the first step in a journey of healing.

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  71. thinking of you all on this christmas eve...
    hope you are all well and *together*
    xoxo

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  72. Hoping that you are Celebrating in the grandest of fashions today and always.

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  73. Holy Crap! This is amazing! I don't do the praying thing, but I will cross my fingers, and wish you an amazing family Christmas!

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  74. I am thrilled to hear of the improvements in MC's condition. Have a wonderful Christmas together!

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