ANOTHER GREAT DAY!!!!!!!!!!!!! YESTERDAY WAS AN AWESOME DAY FOR ALICIA. FIRST LET ME APPOLOGIZE FOR NOT POSTING ANY PICTURES WITH THIS ENTRY. ALICIA DID GET TO GO TO THE PLAY ROOM AS I HAD MENTIONED BUT MME-MA FORGOT THE CAMERA :) I REALIZED IT RIGHT WHEN WE WALKED IN BUT THERE WASNO WAY I WAS GOING TO TURN HER AROUND TO GO AND GET IT AND CHANCE HER BEING O TIRED TO ENJOY HER FUN. SHE HAD A BLAST, SHE WENT RIGHT TO THE KITCHEN AND LAUNDRY AREA, SHE CAN IRON CLOTHES VERY WELL, I TOLD HER WHEN WE GET BACK TO MOMMY'S HOUSE SHE WILL BE IN CHARGE OF THE LAUNDRY. SHE ALSO COOKED ME PIZZA AND CARROTS ( :( ) IT WAS SO NICE TO SEE HER PLAYING LIKE SHE WAS. (SURE WISH I HAD PICTURES)
ALICIA'S ANC IS A 1.24!!!!!!!!!!!!!!! CAN YOU BELIEVE THAT. AND HER WBC IS AT 2.0. I AM SO THRILLED. THIS IS HIGHER THAN WHEN WE GOT HERE. AND IT IS ONLY DAY +20. HER PLATELETS WENT TO 187,000 FROM HER EARLY MORNING TRANSFUSION YESTERDAY.
TODAY IS GOIG TO BE A BUSY DAY. PT/OT IS COMING FOR ALICIA THIS MORNING AGAIN AND SHE IS GOING DOWN STAIRS AGAIN, BUT THIS TIME IT WILL BE FOR AN HOUR NOT 30 MINUTES. AT 11 AM THE DIABETIC NURSE WILL BE HERE TO TEACH ME HOW TO TEST HER BLOOD SUGAR AND GIVE HER INSULIN AND WHEN AND WHAT POINT TO REACT AT WHICH LEVEL IT IS, THEN AT ONE THE DIETARY NURSE WILL BE HERE TO GO OVER WHAT NUTRICIAN AND CALORIES ALICIA WILL NEED AND WHAT SHE CAN AND CAN NOT EAT A DIFFERENT WAYS I NEED TO PREPARE HER FOOD. THEN AT 2 PM THE HOME HEALTH NURSE WILL BE HERE TO SPEND THE AFTERNOON TO TEACH ME HOW TO GIVE MEDS THROUGH THE NG AND HOW AND WHEN SHE WILL BE NEEDING ME TO GIVE HER IV MEDS SHE WILL BE LEAVING WITH MONDAY. THIS IS GOING TO BE ALOT TO LEARN TODAY BUT I AM VERY MUCH READY.
THREE WEEKS TIL ERIKA IS HERE!!!!!!!!!!!!! WE CAN NOT WAIT. DENISE AND CASSIE WILL BE HERE A WEEK FROM TOMORROW AND MY OLDEST SISTER IS TRYING TO GET EVERYTHING IN ORDER FOR THE WEEKEND AFTER ERIKA. I AM SOO HAPPY TO SEE EVERYONE AND I KNOW ALICIA WILL BE ALSO.
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, July 9, 2008
DAY +20
Posted by Michelle at 7:17 AM
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4 comments:
I can picture Alicia in the playroom. It is great to know she has some energy to play! Love, Dianne
I bet she LOVED the playroom! It's great imagining her playing again. I am seriously so impressed with how well everything is going - great counts too!!
You have a ton of stuff to learn, wow! I hope your brain isn't too sore.
You guys are always in our thoughts and prayers...
I have tears of joy rolling down my face as this journey you are on is taking wonderful turns!
We love you guys and pray that all stays well.
Love Tina, Keith, Jo, Jacy & Cameron
Pizza and carrots! Nummy!
Stopping by to let you know I'm still here praying.
Romans 5:1-2 Therefore being justified by faith, we have peace with God through our Lord Jesus Christ: By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God.
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