Wednesday, August 24, 2011

August 24 Update on Hailee

First of all, I have to speak to each and every one of you who has commented on my last update.  Your outpouring of prayer and love support is overwhelming.  My family is truly grateful. 

Please accept my apology if I can't respond to all of them.  Adéye and I are taking turns at the hospital, plus we're tending after all the other children.  But we've read all of your comments and are so very touched. 

I just got back from the hospital.  It seems all the doctors do is test, test, test.  And each time they take blood, poor baby.  She really doesn't understand what's going on.

Word is out in the hospital that Hailee's case is an enigma.  At one time, nine--count 'em, NINE--doctors were in the room discussing her.  They're scratching their heads.

But now for the good news.  Some of you were so kind to suggest what Hailee's condition COULD be.  Let me assure you, Adéye and I have not taken your suggestions lightly.  We have asked the doctors about each of them.  And now that the test results are coming in, we are at least able to rule out some serious stuff...

Leukemia--since those with Down syndrome have a proclivity toward this, it's a legitimate concern, but looking at the blood test results, the doctor says definitely not.
Mononucleosis--tests show that Hailee did have mono at one time in her life, but this condition is not mono.
Meningitis--doctors were going to do a spinal tap to test for it, but decided against it, because they don't suspect it anymore.

There are other things that it could be, but we don't know.

What we DO know is that our God is in the business of healing.  And THAT'S what we're praying and believing for, regardless of what the doctors find. 

I am so confident that many of you will join our prayers about this.  Especially, we need prayers that Hailee's immune system improves more and more so that she doesn't relapse.  So a total, complete, effective, long-lasting healing from God.  Is there any other kind?

Thank you again.  It's times like this when we know we can rely on God, but also on the body of Christ.  Go team!



99 comments:

  1. Continuing to pray for all of you.

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  2. You're right- our God is a God of Healing- and He's shown some mighty miracles in 2011. Praying for your Hailee angel and whole family. I hope you are all ok from the crazy Earthquake!

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  3. Thank you for the update. I sure hope they come up with some answers soon and that the poor darlin starts feeling better.
    Gena

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  4. We know all to well what it is like to have sick children in the hospital and juggle other kids and switching...doing it right now. Thank you so much for taking the time to update us so that we can update our prayer requests. Praying for all of you....

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  5. Praying for Hailee and your whole family. God is the healer of all.

    Coni

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  6. So glad to hear some of the really serious possibilities have been ruled out. Praying for wisdom for the doctors and healing for Hailee. Praying for your family as you deal with the stress of having a family member hospitalized. May the God of Peace be ever in your presence.

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  7. Oh that precious sweet little girl. I almost cried thinking of her having mono once in her life with no one to hold her. Oh that breaks my heart. Still praying for her.

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  8. Wow! Nine doctors! To think that she once laid day after day with nearly no one to care about her and now she has a whole TEAM at her disposal! :) And loving parents and siblings. Praise God. Praying she is healed quickly and that you get answers.

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  9. Been praying for that precious, sweet girl. I hope you get answers soon and she feels much better. Hugs from Missouri :)

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  10. Praying for all of you and for that sweet baby of yours, for COMPLETE HEALING, trusting in God, and praying for Him to bring you both strength

    Much love to all of you from Canada

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  11. our prayers, love and thoughts with you - kisses to your girl xxx

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  12. Praying! Greatly relieved that it isn't leukemia. I didn't want to think that's what it was, but it was causing me to fear.

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  13. THank you so much fro taking the time to update us. I have been praying and worrying about sweet little Hailee. I am so glad there is no indication for leukemia. I was thinking that her cold sores will probably be your indicator in the future she is or going to be getting sick. Although this incredible angel has thrived with you all, she is still so fragile. Prayers

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  14. I have followed your journey to adopt Hailee right from the beginning. I want you to know that Hailee and the rest of your dear family are in my prayers.

    Amy Lucas

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  15. Megs and I are in the throne room right now praying for you angel!

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  16. Hi! New to your blog and family but wanted to say Hailee is in my prayers. I also wanted to mention that my mom has an autoimmune disorder called pemphigus vulgaris and it's symptoms were very similar to Hailee's. She had multiple blisters and ulcers in her mouth, nose, and down her throat. It was very difficult to eat, swallow or even talk sometimes. It took many dr. visits/months of pain before it was diagnosed and they also said herpes at first as well. Anyway, it was a total mystery for so long so I thought I'd throw it out there in case it's helpful. Blessings to you and your family!

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  17. Thanks for updating on your precious little girl! So glad it is none of the ones you mentioned. Praying for a full and speedy healing for Miss Hailee!!!

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  18. Here and thinking of and praying guys, your kids and Hailee. :)

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  19. Praying for your sweet Hailee and for you - Mom and Dad to find rest and for the rest of the crew to be comforted and soon to be reunited with Hailee. Do the fevers persist? I'm so glad it is not leukemia. Praise the Lord.
    Blessings~
    Charrissa

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  20. Thanks for the update Anthony. Sorry there are no real answers yet. Are the docs sure that the Strep is under control??? I have a friend whose throat filled with blisters when she got Strep.She was very very sick with it. Praying!
    Lisa

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  21. Thank you so much for the update - I'm glad the doctors are narrowing in on Hailee's illness and have eliminated some scary candidates. Can numbing cream be used before drawing blood? As you may very well know already, being well-hydrated makes blood draws much, much easier, and butterfly needles are the way to go, especially with a child. Another thing to try would be to gently tickle or massage Hailee's cute little toes just as the needle goes in - this fools the body into focussing on the part farthest away from that nasty needle and is a good distraction.

    Sending wishes and prayers for a peaceful night for all of you, with good news by morning...

    Susan in Ky
    Cousin to 2 from U.

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  22. Our God sure is in the business of healing. I stumbled across Adeye's blog a few months ago, and now it just blesses my heart to keep up with your family. I am lifting up your sweet precious Hailee. Thank you for keeping us updated. I am also specifically praying tonight for each of your children and that you and Adeye both get some rest and feel renewed each and every morning as you juggle all of your "life" responsibilities. Sleep peacefully tonight.

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  23. Praying for sweet Hailee here in Chicago.

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  24. As one who is in the hospital myself, I wanted you to know how much my thoughts are with your entire family.

    While I am not religious myself, I have asked the nuns and the visiting priest to pray for all of you.

    I know it's not much, but you are in my thoughts constantly. It actually helps, to think of someone else during this time.

    Yours,

    Emma B.

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  25. Anthony, thanks so much for these updates. I've been thinking about Hailee non-stop. If love and prayers can get her well, she's on her way! Love to Hailee, Adeye, you, and the other awesome Salems. We are all thinking of you and hoping for good news!

    --Kim

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  26. Thanks for updating. Hailee's story has touched so many, that I think we all hurt to know that she is sick. I believe in total and complete healing from our Father and stand with you in agreement for Hailee. Please Dear God heal this precious little one. Give this family strength to endure. In Jesus Name.
    Amen.

    Stephanie Lynch

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  27. thankful for the update anthony! please let adeye know i continue to keep you all in my prayers. God is with you! He will give the doctors wisdom and guidance every step of the way. Praying for peace to rule your hearts as you wait for God to answer every single one of our prayers! God bless!

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  28. praying for healing for little Hailee, blessings from Canada!

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  29. Me again--I just thought of something. Have the doctors considered PFAPA syndrome? Periodic fever, aphthous stomatitis, pharyngitis and adenitis yndrome has all the symptoms you have described.

    Here are two links that have information on it:

    1)http://www.wrongdiagnosis.com/p/periodic_fever_aphthous_stomatitis_pharyngitis_and_adenitis/intro.htm

    2)http://my.clevelandclinic.org/disorders/periodic_fever_syndrome/rheumatology_overview.aspx (PFAPA is described at the bottom, the last in the line of periodic fever syndomes)

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  30. Continuing to pray for a quick and complete recovery for sweet Hailee. Thanks for taking the time to give an update.

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  31. So grateful it's not any of the illnesses you mentioned. And what a blessing to have 9 doctors working on finding what it is that is making Hailee so sick.

    I will continue to pray for your little angel and your family.

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  32. Precious girl, I've never met her, but just have come to love her and your family through both blogs. I know the sticks are so hard to watch. We were there when our lil guy was six weeks old. Brutal. You can't explain why, and they just don't understand. Praying, praying, praying that you're all home soon with a healthy little Hailee.

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  33. Praying for your sweet baby and for all of you. Prayers that the doctors will get it figured out. Soooo thankful it isn't leukemia. hugs!!

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  34. Anthony, Hailee is in our prayers! Tonight I thought of a friend who had a son last year going through really strange fever symptoms, much like Hailee in their origin. It turned out he has something I believe called "Periodic Fever Syndrome." Apparently it's pretty rare so low on the doctors radar. I thought it might be something worth asking about, though.
    Prayers for healing for your precious girl!

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  35. Praying that God speak his special language to Hailee and let her have some peace and comfort from her wonderful family during this hard time. You are covered in Texas prayer.

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  36. Praying for sweet little Hailee and your family. May she be healed and blessings flow.

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  37. Thank you for letting us know so we can pray. We adore your little ones that we have gotten to know here on the blog. My children are always especially interested in Hailee and Harper because our littlest one also has Down syndrome. We will all be thinking of you ALL and praying for God to work in this unsettling situation.
    I know it's not "conventional" medicine, but have you considered having her tested by someone who uses a more holistic approach? They can often get to the root of the matter when traditional doctors/medicine cannot figure it out. We have seen it first hand with several family members and now with our daughter who has DS. There are many out there who are Christians and come at it from that perspective. Let me know if you need more info.

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  38. Thank God no leukemia! Prayers continue...

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  39. Will pray for His mercy and grace upon little Hailee, for the exact solution.

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  40. Praying & trusting God for healing!

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  41. I'm praying for you all. Glad that you have ruled out some things, but hoping for you to have the answers you need to help her get well.

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  42. Will be praying for Hailee's recovery!

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  43. still praying for Hailee and for you all for strength. much love and hugs from all of us xxxx

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  44. Poor Hailee-she is such a fighter! We will be praying for her. Thanks for the updates

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  45. Greeting from Baltimore MD :):) I've been a long time follower but this is my first time commenting. I am praying for Hailee's speedy recovery and for the wisdom of all those doctors (9? seriously? That is alot of brain power in one room!) to get to the bottom of this. To God be the glory!

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  46. Lifting up beautiful Hailee and your family. Thank you for letting us know how to pray for this gift from the Lord! We so appreciate the witness you and Adeye have.

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  47. Praying for sweet little Hailee's healing and wisdom for the doctors. May God's peace, comfort, and healing power be very real to you and your family.

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  48. Praying Hailee is on the road to recovery very soon x

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  49. Thank you so much for letting us know how she's doing. Prayers for continued strength for you and Adeye as you tend to both Hailee and your darlings at home. Prayers that Hailee will continue to amaze everyone - she wasn't supposed to thrive and she has - may this be just a bump in the road. I pray she recovers completely and fast!

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  50. Can't stop thinking about and praying for Hailee. So relieved to know it's not leukemia. Have they checked for a burst appendix?

    Will keep praying.

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  51. Praying for your sweet little girl! I'm glad they ruled out some of those very serious illnesses. Praying for answers and healing!

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  52. Praying that God holds you and Hailee in the palm of his hand today and breathes healing on her. I also pray that the other children adjust to having just one parent at home during this time. God Bless you all.

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  53. I planned a day of fasting and prayer today and sweet Hailee and your family will be in my prayers. May you feel the peace and comfort of God today.

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  54. Praying for Hailee. Thank you for taking the time to update us.

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  55. Thank you so much for the update. Hailee and the rest of your family are in my prayers. Having a little one in the hospital is so hard, and I pray for strength for you and Adeye.

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  56. Thanks for the updates, Anthony. Praying alongside you guys for sweet little Hailee whose come so far and fought so hard. Would love to hear Sunday at MCC that Hailee is markedly improved! Hope to see you all soon.

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  57. Sweet Hailee is in my prayers.

    God's blessings on you all,
    Sarah

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  58. I'm praising God for the things it's not!!! And I'm trusting Him for Hailee's complete healing and for peace during her hospital stay. Love to you all.

    Michelle from IL

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  59. Claiming healing for Hailee in Jesus name! <3 As I was reading your post this verse crossed my mind...."But He was wounded for our transgressions, He was bruised for our iniquities;
    The chastisement for our peace was upon Him,
    And by His stripes we are healed." Isaiah 53:5

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  60. When my cousin was an infant, she contracted a herpes virus from a visitor with a cold sore. The virus infected her brain, then caused seizures, brain swelling, and permanent brain damage. She is now a teenager and the herpes virus recently resurfaced and caused an eye infection that affected her vision in one eye. I say this not to scare you, but to make sure they have the herpes virus well in hand.

    Hoping Hailee is well soon!

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  61. Prayers and thoughts are with you all! Praying for something to pop up on her bloodwork that helps them pinpoint the problem. Sometimes ruling things out is the best way to find out what it IS. Try to take care of yourselves - being a parent in the hospital with a sick child can be exhausting and stressful!

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  62. Prayers continue my brother - for ALL you guys!

    aus

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  63. I haven't commented but I have definitely been praying and will continue to do so. Those three sound like the "big" things to rule out. Sounds to me like some nasty bug has just gone haywire in her little system. Praying that the Great Physician would take over and she would be made completely whole - including gaining back those three lost pounds!!

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  64. Praying for you all!

    Have they ruled out Kawasaki Disease?

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  65. Lifting up precious Hailee to the throne of God for His healing power because He is Jehovah Rophe - the Lord who heals. May His grace and peace surround your whole family especially at this time. Love you all in the Lord.

    helen from Canada

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  66. Hi Anthony.
    Have them check her markers for a possible autoimmune disorder.
    Conditions like Lupus, Juvenile Rheumatoid Arthritis and other autoimmune disorders are consistent with the symptoms you've described.
    I hope Hailee is feeling better soon.
    -Madi Grey

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  67. Praying here for that sweet darling girl and for the doctors as they try to find out what is wrong and for her family as you all stand beside her.
    Leveta

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  68. Sending her and the family love and prayers today. May the healing begin and may God direct the doctors to the answer.

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  69. Have they looked into Kawasakis Disease? Our son had it a few years back and the mouth sores, bloodwork a little "off" and persistent high fevers sound familiar. Very rare and so many doctors. Misdiagnose......

    http://kidshealth.org/parent/medical/heart/kawasaki.html

    It is an autoimmune disease. MUST be treated ASAP to prevent heart damage. Just a thought. Praying for your sweet girl!

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  70. Praying for preciuos Princess Hailee.

    Gods blessings...

    Erika

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  71. Praying for your sweet Hailee and your family! When I was a teen, I had strep and the herpes virus back to back. I was active and healthy but it still took me down with a week and a half of high fever and mouth sores. I lost 15 lbs and hangnails on my fingers became infected because of the toll on my immune system. I can imagine how the same thing in such a wee one could make her very sick and for a long period!

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  72. Hi friends, been reading your blogs since Vanya/Ian was first shared with us. The Lord has pressed me to ask, Have you considered taking regular communion with Hailee? (Sorry , I haven't read all the comments, so perhaps others have already mentioned it.) Our family takes communion together here at home regularly, even with our 6-year olds, and especially when they are sick. We've seen amazing results when the healing purpose of the bread and wine/juice is applied...fevers broken in short order, stomach flu eradicated within hours and I took it throughout my cancer journey and am here today with lots of abundant life to share with my husband and kids! We weren't familiar with the healing purposes of breaking bread until we read the message about it by Pastor Prince. Since then, it's become a regular part of our family's time with the Lord and we've never been healthier! I can send some of the devos I have that explain it with Scriptural application if you're interested. The main thing is, Jesus carried every sickness and disease, known and unknown, to the cross and finished them there. He knows what sweet Hailee's weakness is even when we do not and the payment for her healing has already been made! It's great news when viewed from that perspective :-) Keeping you all in prayer, especially your little sweetie. For Him, Jen Gunning farmgirl2philly (at) yahoo (dot) com.

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  73. Praying for Hailee and family.. Thankful for a God who knows and heals!!!

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  74. Hi,
    I hope Hailee is feeling better! Have you thought about PFAPA? It's symptoms are high fever, mouth sores, and it's often misdiagnosed as strep. Another possiblity is HIDS (a genetic disorder), which includes periodic high fever, poor growth, mouth sores, and swollen lymph nodes: http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/hids.asp
    I hope you figure out what is wrong soon!
    -Emma

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  75. Standing with you in prayer for Hailees healing and complete recovery. Praising God for the good plan He has for His precious ones!Hugs!

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  76. Still praying for your precious angel here in Boston:) My friend's young son went into the hospital here at Boston Children's with the same symptoms. They finally figured out that it was Crohn's Disease. This is an autoimmune disorder that impacts the digestive system and can go from the mouth thru the digestive system.

    He is doing beautifully now:)

    May you be surrounded by love, comfort and strength.

    Susan

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  77. Just checking in on Hailee. Praying for her!

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  78. Joining in prayer for dear sweet Hailee and also for each of you who support/love her...... that God will continue to boost her immune system, giving the doctors wisdom and her family the energy and stamina that you need to care for her and for each other.!!!

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  79. So glad those have been crossed off the list! I pray a simple answer comes soon, for Hailee and for your family.

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  80. Praying for sweet Hailee, and that the doctors figure it out quickly. Can't wait to see more pictures of that wonderful smile of hers!

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  81. I'm sure someone has already suggested this, I didn't read all of the comments, but have they checked for Hand, Foot, and Mouth disease? My friend's son has it right now and so I just looked it up and it sounds like exactly what Hailee has. Fever, malaise, loss of appetite, and blisters in the mouth. Just thought I'd let you know, the symptoms just jumped off the page for me when I read them! Hope she is feeling better. Praying for you all right now.

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  82. Continuing prayers for all of your family. Prayers that she will be healed and prayers for you and Adeye to be strong enough to perform all of your duties as parents.

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  83. Many prayers for your sweet girl and for all of you.

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  84. Just wondering how things were going with Hailee. Did not see an update so I was a little concerned. I know it is tough going to and from the Hospital and also caring for the rest of your family, and trying to update a blog too.

    If I lived closer I would come help you guys out but since I probably live a thousand miles away guess that is not an option. Sorry!

    Please update when you can. I am praying that she is doing so much better by now though.

    Love,
    Sheila

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  85. Believing for Hailee's healing. Still covering your entire family in many prayers.

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  86. I'm checking this often and praying for little Hailie and all of your family.

    Also, I know it's been asked here, but have you tested for Kawasaki yet? This sounds so much like other accounts I've read of children with Kawasaki: persistent high fever, confused doctors, mouth sores, starts with a viral infection, child lethargic and very ill, etc. I would really ask your doctors, though I've heard that some will brush it off and not test since it's such a rare disease!

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  87. Hi Anthony - Are there any Hailee updates? I've been checking multiple times a day, worried about that little girl! Thinking of you guys...

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  88. Um, I've seen a few people mention that they're praying to "boost" Hailee's immune system.

    That's the worst possible thing that could occur if she has an autoimmune disorder!! Autoimmune disorders involve an immune system that's in overdrive. The last thing you want to do is "boost" it.
    In fact, Hailee's circumstances (in addition to her symptoms) are extremely consistent with an autoimmune condition. In Ukraine, her immune system was suppressed by poor nutrition. Now that she's receiving proper nutrition, her immune system is no longer suppressed, so the symptoms are emerging.

    Instead, pray that her immune system will begin functioning normally.

    -Madi G.

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  89. Virtual hugs- I hope sweet hailee is feeling better!

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  90. Offering prayers for Hailee, each of you and her doctors & nurses.

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  91. Praying for your sweet girl.

    Blessings,
    Freedom HOllow Farmgirl

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