WE ARE HEADED BACK TO CINCINNATI MONDAY. WE WERE RELEASED FROM THE HOSPITAL ON SUNDAY, FINALLY. ALICIA'S BLOOD SUGARS HAD GOTTEN AS HIGH AS IN THE 900'S AND HER SODIUM WAS DROPPING WHICH IS A BAD SIGN SO THE DECISION WAS MADE TO FINALLY GET HER SUGAR UNDER CONTROL. NOW SHE IS GETTING 2-6 SHOTS OF INSULIN A DAY. IT IS SO FUNNY BECAUSE ALICIA GIVES HERSELF HER OWN SHOTS. SHE IS VERY GOOD AT IT. ALSO IN THE HOSPITAL SHE DECIDED SHE WOULD DO HER OWN VITALS ALSO. THEY JUST ROLLED IN THE MACHINE AND ALICIA TOOK OVER. SHE PUT THE BLOOD PREASURE CUP ON TOOK HER BLOOD PREASURE THEN TOOK HER TEMPATURE AND SHE EVEN HAD TO HOLD THE STETHSCOPE FOR THE DOCTOR.
ANOTHER TEST CAME BACK THAT SAID ALICIA IS ALOS VITAMIN D DEFICIANT. HER GVHD IS STILL VERY HORRIBLE IN HER MOUTH AND THE STEROIDS DO NOT SEEM TO BE WORKING. THEY ARE CAUSING MORE DAMAGE THAN GOOD AS TO WHAT I SEE. HER HAIR IS ALMOST ALL FALLING OUT AGAIN. I AM GETTING VERY WORRIED ABOUT ALICIA AGAIN. I AM VERY GLAD WE ARE GOING BACK TO CINCINNATI. HOPEFULLY WE GET SOME ANSWERS SOON.
ALICIA IS ALSO GETTING HER PICC LINE REPLACED. IT IS INFUSING FINE BUT NO ONE HAS BEEN ABLE TO GET BLOOD TO DRAW SO SHE HAS HAD TO BE POKED TO GET ALL OF HER TESTS DONE WHICH IS DEFEATING THE PURPOSE OF HAVING A PICC LINE. SHE IS NOT HAPPY ABOUT HAVING TO GET A NEW ONE, SHE SAID SHE WOULD RATHER GET A SHOT EVERY TIME BUT SHE IS ALSO STILL ON NIGHTLY FLUID SO THE PICC LINE IS A MUST STILL.
I WILL UPDATE AFTER WE GET BACK FROM CINCINNATI. PLEASE KEEP ALICIA AND ALL OTHER KIDS WHO ARE STILL BATTLING TRANSPLANTS IN YOUR PRAYERS
ALICIA'S JOURNEY WITH FA
Welcome to our blog where we try to keep family & friends updated on our daughter/granddaughter, Alicia, who is one of the most adorable five year olds ever! She was born with a very rare & aggressive disease, called Fanconi anemia, which causes bone marrow failure, as well as different cancers . She is currently undergoing a bone marrow transplant to try to cure her bone marrow issues. If you'd like to gain a little more background, please visit our first entry HERE.
Wednesday, January 27, 2010
CINCINNATI
Posted by Michelle at 10:53 AM
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24 comments:
Mee-Ma,
Finally had a chance to catch up. I hope you know that Alicia and YOU have been in our prayers everyday all this time. Praying that all goes well in Cincinnati Monday and that Alicia has some improvement with the GVHD.
So glad to read also that you are going to Camp Sunshine! Keeping our fingers crossed we get to go too.
Love, hugs and prayers,
Mary Ann
Peter's Mom (day +56)
Hope all goes well in Cinci!
Continuing to pray!
Philippians 4:6-7 Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
Prayer Bears
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Know that I'm here praying right now.
Psalm 23:1-3: The LORD is my shepherd; I shall not want. He maketh me to lie down in green pastures: he leadeth me beside the still waters. He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
Prayer Bears
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Praying right now!
Psalm 23:4-6 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.
Prayer Bears
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The Lord is with you right now, lifting you up, giving you strength! Always praying!
Isaiah 40:28-31 Hast thou not known? hast thou not heard, that the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary? there is no searching of his understanding. He giveth power to the faint; and to them that have no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
Prayer Bears
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Safe travels, my friend!
Know that I'm praying!
Psalm 121:1-4: I will lift up mine eyes unto the hills, from whence cometh my help. My help cometh from the LORD, which made heaven and earth. He will not suffer thy foot to be moved: he that keepeth thee will not slumber. Behold, he that keepeth Israel shall neither slumber nor sleep.
Prayer Bears
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How did it go today?
Praying right now.
Psalm 121:5-8: The LORD is thy keeper: the LORD is thy shade upon thy right hand. The sun shall not smite thee by day, nor the moon by night. The LORD shall preserve thee from all evil: he shall preserve thy soul. The LORD shall preserve thy going out and thy coming in from this time forth, and even for evermore.
Prayer Bears
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Know that I'm continuing to pray!
John 14:1-3: Let not your heart be troubled: ye believe in God, believe also in me. In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also.
Prayer Bears
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Am here praying!
Proverbs 3:5-6 Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.
Prayer Bears
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Know that I'm still here praying!
Psalms 40:1-4 I waited patiently for the LORD; and he inclined unto me, and heard my cry. He brought me up also out of an horrible pit, out of the miry clay, and set my feet upon a rock, and established my goings. And he hath put a new song in my mouth, even praise unto our God: many shall see it, and fear, and shall trust in the LORD. Blessed is that man that maketh the LORD his trust, and respecteth not the proud, nor such as turn aside to lies.
Prayer Bears
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Always praying in Seattle!
I Peter 1:3-5 Blessed be the God and Father of our Lord Jesus Christ, which according to his abundant mercy hath begotten us again unto a lively hope by the resurrection of Jesus Christ from the dead, To an inheritance incorruptible, and undefiled, and that fadeth not away, reserved in heaven for you, Who are kept by the power of God through faith unto salvation ready to be revealed in the last time.
Prayer Bears
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Praying!
Hebrews 4:14-16 Seeing then that we have a great high priest, that is passed into the heavens, Jesus the Son of God, let us hold fast our profession. For we have not an high priest which cannot be touched with the feeling of our infirmities; but was in all points tempted like as we are, yet without sin. Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need.
Prayer Bears
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Know that I'm always here praying!
Hebrews 6:17-20 Wherein God, willing more abundantly to shew unto the heirs of promise the immutability of his counsel, confirmed it by an oath: That by two immutable things, in which it was impossible for God to lie, we might have a strong consolation, who have fled for refuge to lay hold upon the hope set before us: Which hope we have as an anchor of the soul, both sure and stedfast, and which entereth into that within the veil; Whither the forerunner is for us entered, even Jesus, made an high priest for ever after the order of Melchisedec.
Prayer Bears
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These verses are so comforting. Continuing to pray!!!!!!!!!
Revelation 21:1-4 And I saw a new heaven and a new earth: for the first heaven and the first earth were passed away; and there was no more sea. And I John saw the holy city, new Jerusalem, coming down from God out of heaven, prepared as a bride adorned for her husband. And I heard a great voice out of heaven saying, Behold, the tabernacle of God is with men, and he will dwell with them, and they shall be his people, and God himself shall be with them, and be their God. And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.
Prayer Bears
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Continuing to pray!
Romans 8:15-18 For ye have not received the spirit of bondage again to fear; but ye have received the Spirit of adoption, whereby we cry, Abba, Father. The Spirit itself beareth witness with our spirit, that we are the children of God: And if children, then heirs; heirs of God, and joint-heirs with Christ; if so be that we suffer with him, that we may be also glorified together. For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.
Prayer Bears
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Praying in Seattle!
II Samuel 22:2-3 And he said, The LORD is my rock, and my fortress, and my deliverer; The God of my rock; in him will I trust: he is my shield, and the horn of my salvation, my high tower, and my refuge, my saviour; thou savest me from violence.
Prayer Bears
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The Lord is there with you, whatever you have to face! Praying!
II Samuel 22:29-33 For thou art my lamp, O LORD: and the LORD will lighten my darkness. For by thee I have run through a troop: by my God have I leaped over a wall. As for God, his way is perfect; the word of the LORD is tried: he is a buckler to all them that trust in him. For who is God, save the LORD? and who is a rock, save our God? God is my strength and power: and he maketh my way perfect.
Prayer Bears
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Know that you continue to be in my thoughts and prayers!
Psalm 9:9-10 The LORD also will be a refuge for the oppressed, a refuge in times of trouble. And they that know thy name will put their trust in thee: for thou, LORD, hast not forsaken them that seek thee.
Prayer Bears
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Praying as always!
Romans 11:33-36 O the depth of the riches both of the wisdom and knowledge of God! how unsearchable are his judgments, and his ways past finding out! For who hath known the mind of the Lord? or who hath been his counsellor? Or who hath first given to him, and it shall be recompensed unto him again? For of him, and through him, and to him, are all things: to whom be glory for ever. Amen.
Prayer Bears
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Lifting up prayers!
Psalm 17:6-7 I have called upon thee, for thou wilt hear me, O God: incline thine ear unto me, and hear my speech. Shew thy marvellous lovingkindness, O thou that savest by thy right hand them which put their trust in thee...
Prayer Bears
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As we head into the Lenten season may our thoughts be on what Christ has done so that we have the hope of Heaven. Praying.
Luke 18:31-33 Then he took unto him the twelve, and said unto them, Behold, we go up to Jerusalem, and all things that are written by the prophets concerning the Son of man shall be accomplished. For he shall be delivered unto the Gentiles, and shall be mocked, and spitefully entreated, and spitted on: And they shall scourge him, and put him to death: and the third day he shall rise again.
Prayer Bears
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Know that I'm praying!
I Peter 1:6-9 Wherein ye greatly rejoice, though now for a season, if need be, ye are in heaviness through manifold temptations: That the trial of your faith, being much more precious than of gold that perisheth, though it be tried with fire, might be found unto praise and honour and glory at the appearing of Jesus Christ: Whom having not seen, ye love; in whom, though now ye see him not, yet believing, ye rejoice with joy unspeakable and full of glory: Receiving the end of your faith, even the salvation of your souls.
Prayer Bears
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Stopping by to let you know I'm still praying!
I Peter 1:18-21 Forasmuch as ye know that ye were not redeemed with corruptible things, as silver and gold, from your vain conversation received by tradition from your fathers; But with the precious blood of Christ, as of a lamb without blemish and without spot: Who verily was foreordained before the foundation of the world, but was manifest in these last times for you, Who by him do believe in God, that raised him up from the dead, and gave him glory; that your faith and hope might be in God.
Prayer Bears
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Praying right now!
I Peter 1:23-25 Being born again, not of corruptible seed, but of incorruptible, by the word of God, which liveth and abideth for ever. For all flesh is as grass, and all the glory of man as the flower of grass. The grass withereth, and the flower thereof falleth away: But the word of the Lord endureth for ever. And this is the word which by the gospel is preached unto you.
Prayer Bears
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