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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12 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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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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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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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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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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