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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.



Monday, August 18, 2008

DAY +62

IT IS SO HARD TO BELIEVE THAT ALICIA HAS BEEN INPATIENT TODAY FOR 70 DAYS. SHE SEEMS TO BE DOING ALOT BETTER THE LAST COUPLE OF DAYS. THE MAIN ISSUES AT THIS TIME IS STILL THE GVH, BLOOD PRESSURE AND EATING. IN THE PAST FOUR DAYS SHE HAS ONLY TAKEN 3 BITES OF NOODLES AND TWO BITES OF A HAMBURGER. I CAN NOT EVEN GET HER TO EAT CHICKEN NUGGETS. SHE IS STILL GETTING TUBE FEEDS ABD IV NUTRITIONS BUT ONE OF HER MUSTS BEFORE WE CAN EEN THINK ABOUT LEAVING IS THAT SHE NEEDS TO EAT. ZAC ( ONE OF ALICIA'S NURSE'S ) TOLD ME YESTERDAY AGAIN THAT IT WILL BE AT LEAST ANOTHER 3 WEEKS BEFORE WE WILL EVEN GET TO GO TO THE RONALD MCDONALD HOUSE AND HE MOST DEFFINATLY ASSURED US THAT WE WILL NOT BE HOME BY THANKSGIVING, SO THAT MEANS SHE WILL BE HERE ON HER BIRTHDAY.
ALICIA'S PIC LINE SEEMS TO BE DOING WELL. HERE IS A PICTURE OF ALICIA GIVING THEO HIS PICK LINE. THEO HAS TO EVERYTHING THAT ALICIA HAS..............

THEO HAD TO GO HOME LAST NIGHT TO TAKE A BATH BUT HE WILL BE BACK LATER TODAY. ALICIA HAS ASKED SEVERAL TIMES THIS MORNING IF THEO WAS DONE TAKING A BATH...... HOPEFULLY HE WILL BE BACK SOON.

YESTERDAY I FINALLY CONVINCED ALICIA THAT SHE HAD TO GET OUT OF BED AND START WALKING SO SHE COULD GET BETTER. IT WAS HARD IN THE BEGGINING, SHE KEPT TELLING ME " I CAN'T, MY TUMMY HURTS", SHE EVEN WENT AS FAR AS TO TELL ME THAT HER DADDY SAID SHE DIDN'T HAVE TO, BUT I OVER CAME THAT ONE VERY FAST AND CALLED ANSHON AND HE TOLD HER IT WOULD MAKE HER FEEL BETTER IF SHE GOT OUT AND WALKED A LITTLE. FINALLY SHE SAID OK WHEN ALBERT, HER LITTLE FRIEND FROM A COUPLE OF ROOMS DOWN, CAME AND KNOCKED ON THE DOOR AND TOLD HER TO COME OUT. WHEN ALICIA SEEN HIM SHE WAS OK WITH IT. SHE RODE THE BIKE AT FIRST WHICH I FIGURED WOULD BE ALOT EASIER TO GET HER LEGS MOVING, THEN SHE EVENTIALLY AGREED TO WALK A BIT. YOU COULD TELL SHE WAS VERY UNSURE AND VERY WEAK AND VERY WOBBLY BUT SHE DI IT. HERE IS ALICIA AND HER FRIEND ALBERT AND YES EVEN ME........

I HAVE DECIDED THAT I AM GOING TO MAKE HER GET UP AND OUT OF HER ROOM TWICE A DAY UNLESS THERE IS A REASON SHE CAN'T. TODAY IS THE PRINCESS PARADE THAT HAS BEEN SO LONG COMING. ALICIA AND ALBERT AND ABBY, WHICH IS THE DAUGHTER OF A LADY NAMED REID WHO IS A VERY GOOD FRIEND OF MINE NOW. REID AND I HAVE BECAME GOOD FRIENDS AND ABBY IS JUST THE COOLEST. TODAY IS ABBY'S FIRST DAU SINCE HER TRANSPLANT WHERE HER COUNTS ARE HOGH ENOUGH TO BE ABLE TO LEAVE HER ROOM. ALL OF THE KIDS ARE VERY EXCITED, EVEN LITTLE HANNAH WHO CAN NOT COME OUT YET IS GETTING DRESSED UP AND IS GOING TO WAVE FROM INSIDE HER DOOR. I WILL TAKE ALOT OF PICTURES AND POST THEM TOMORROW. ( THANKS SO MUCH TO ALL OF OUR FRIENDS AT TALL GRASS IMAGING FOR THE PRINCESS OUTFIT ALICIA WILL BE WEARING TODAY!!!!!!!!!)

ALICIA IS STIRRING NOW SO I AM GOING TO TRY MY HARDEST TO GET HER TO EAT SOMETHING. THANKS EVERYONE FOR SO MUCH SUPPORT

( 51 HOURS TIL MOMMY AND DADDY WILL BE HERE,.... HORRAY!!!!!!!!!!)

4 comments:

Anonymous said...

I love that photos; thanks so much for sharing them. I'm so happy to hear that Alicia was able to get up and move around a bit. That Theo is very cute...I feel like I know him personally! Love, Dianne

Charisse said...

Hi Michelle,
it is nice to see a picture of you too. It is nice that Alicia was able to get up a little.
It is so hard to eat when you feel so unwell. I remember when I was in hospital with pneumonia last year and was in HDU. I was so sick and I just could not force myself to eat. It was very, very hard. I knew I was feeling better when I would get some appetite back. Alan would help me to eat but I could only get so much in that my body would allow before throwing up from feeling awful. In good time Alicia will feel much better and will suddenly start to eat. That is when you know she is really doing heaps better. I hope you have a better time of getting her to eat just a little more, but it will come. Know that it will come. Here is a ((((HUG))))
Love Charisse

Anonymous said...

Hope all's well there!
The Lord will be with you always! I'll be here praying!
Colossians 3:15-16 And let the peace of God rule in your hearts, to the which also ye are called in one body; and be ye thankful. Let the word of Christ dwell in you richly in all wisdom; teaching and admonishing one another in psalms and hymns and spiritual songs, singing with grace in your hearts to the Lord.
Prayer Bears

Lynn said...

I read this psalm for devotions this morning. It's always been one of my favorites. Praying right now!
Psalms 121:1-8 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. 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.
The Prayer Bears