HAPPY BIRTHDAY ERIKA!!!!!!!!!!!!!!!!!! I HOPE BY THE TIME YOU READ THIS THAT ALICIA HAS ALREADY GOT TO SING YOU THE HAPPY BIRTHDAY SONG. I MISS YOU VERY MUCH BABY AND I CAN NOT WAIT TO SEE YOU A WEEK FROM TODAY!!!!!!!!! I HOPE YOU HAVE A GREAT BIRTHDAY AND I SOOOO WISH I COULD SPEND YOUR SPECIAL DAY WITH YOU.
LAST NIGHT I WAS LAYING DOWN THINKING ABOUT 22 YRS AGO WHEN MY ONE AND ONLY CHILD WAS BORN AND I REMEBER VERY CLEARLY HOW BEAUTIFUL SHE WAS AND HOW HAPPY I FEELED. SHE HAS GROWN UP TO BE A VERY AWESOME MOM AND BEAUTIFUL WOMAN. (SHE GOT THAT FROM HER MAMA) THEN THE NEXT THOUGHT THAT CAME TO MY MIND WAS THE "LABOR DAY HOLIDAY" SHOULD BE FOR THE MOTHERS OF THE CHILD WHO'S BIRTHDAY IT IS!!!!!!!!!!!!! WE ARE THE ONES WHO ENDURED THE MANY HOURS OF "LABOR". I KNOW YOU PROBABLY THINK I AM LOOSING IT BUT AT LEAST I AM NOT TALKING TO THE BALLOONS STILL. :)
ALICIA GOT HER CHICKEN NUGGETS YESTERDAY!!!!!!!!!!!!!!!!!! I DECIDED TO CALL A CAB FROM THE HOSPITAL AND TAKE IT TO MCDONALDS TO GET HER SOME NUGGETS, BY THE TIME I GOT THERE AND BACK TO THE HOSPITAL THE FARE WAS $9.00 (IT IS ONLY FIVE BLOCKS AWAY) SO IT ENDED UP COSTING ME $12.00 FOR A HAPPY MEAL ( $9.00 TAXI + $3.00 COST OF HAPPY MEAL) THEN WHEN I GOT BACK TO THE ROOM ALICIA WAS TIRED AND ONLY ATE 2 NUGGETS, SO IF YOU BREAK IT DOWN THEY WERE $6.00 FOR EACH NUGGET. OF COURSE I HAD TO THROW THEM AWAY WHEN SHE DIDN'T WANT TO EAT ANY MORE DUE TO THE LOW BACTERIA. BUT LATER THAT NIGHT I GOT A CALL FROM TINA AND SHE HAD HER HUSBAND ON HIS WAY HERE WITH 20 MORE CHICKEN NUGGETS FOR ALICIA. SHE WAS SOOOOOO HAPPY WHEN SHE WOKE UP AND SEEN MORE NUGGETS. SHE EVEN BROUGHT HER THE CUTEST BEAR THAT SHE CUDDLED UP WITH AND WENT BACK TO SLEEP AFTER HER 2ND CHICKEN NUGGET SPREE. THIS IS A PICTURE OF HER AND THE BEAR......
ALICIA DID FARELY WELL YESTERDAY. THEY ARE STILL HAVING PROBLEMS WITH HER BLOOD PREASURE PLAYING LITTLE TRICKS. I HAVE NO IDEA WHAT THIS MEANS BUT NOW THEY ARE WORRIED THAT THE TWO NUCMERS ARE SO CLOSE TOGETHER. HER BOTTOM NUMBER IS STIL HIGH, LAST NIGHT WHEN THEY WERE WORRIED IT WAS AT 105/89???????????????
BELOW IS THE PICTURES I PROMISE YESTERDAY OF WHEN SHE HAD WENT DOWNSTAIRS TO THERAPY. THE FIRST IS OF HER STILL ON THE FLOOR LOOKING UP AT ME TELLING ME SHE COULDN'T WALK..................
AND THE NEXT ONE IS OF HER IN THERAPY WHILE WE WERE PLAYING "DON'T BREAK THE ICE"
I KNOW I HAVE NOT UPDATED ON ALICIA'S COUNTS LATELY SO HERE THEY ARE AS OF YESTERDAY THE 24TH. I HAVE NOT SEEN THE ONES FROM TODAY YET......
WBC-4.2
HBG-8.5
PLATELETS-31 (SHE RECIEVED SOME LAST NIGHT )
ANC-3.40
THEY ALL WERE SLIGHTLY HIGHER THAN THOSE THE DAY BEFORE BUT THEY HAD STOPPED THE MEDICINE USED TO HELP BOOST HER COUNTS TO SEE IF HER BODY WILL START KEEPING UP ON ITS OWN.
ALICIA JUST WOKE UP SO I WILL HAVE TO UPDATE MORE LATER......
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.
Friday, July 25, 2008
DAY +36
Posted by Michelle at 6:43 AM
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4 comments:
Happy Birthday, Erika! I agree with you on the Labor Day idea:-) haha!
You cracked me up about the chicken nuggets - ha!! Glad she got to get meor after that. Even if she only had two of yours, it was still worth it!
We hope they figure out her blood pressure. That is a little odd that her top number is so low and her bottom number is so high. It seems like generally they will both be high or both be lower (of course, I don't really know what I'm talking about - just basing it off of what mine were like during pregnancy, which I'm sure is very different than transplant).
Hang in there guys. You're in our thoughts and prayers.
Love,
The Clifton's
Hello Michelle,
hehe...YES!!!! Chicken nuggets! That is wonderful that Alicia got her chicken nuggets and when she could not eat any more, she still got given more later! Yes, it is always nice to feed a craving. You go, Alicia!
I can help you with the explanation of the Blood Pressure from being a nurse. I can give you a general idea. However, it would still be good for you to get the explanation from the doctor. The Blood Pressure...now the difference between the top number and the bottom number is called the MAP....mean arterial pressure. It is how they measure this. The difference between the systolic and dyastolic (the two numbers that make up blood pressure). As a general rule a difference of 60 (when subtracting them from each other) is safe to keep the organs all prefused with oxygen and stuff....perfused meaning filled with. It is measuring how the blood pumps to these organs. I know, I am trying to say it without all the medical terms so I hope I have not confused you. Obviously everyone may not have the difference of 60 and it can be varied but when it is so close together they can become a little concerned that the pressure of filling the ogans is decreased and blood flow may not be far enough to reach the organs further away. It doesn't mean that the organs are not receiving blood...they are being cautious. So the numbers being so close together may mean that the blood flow is decreased because the MAP (imbetween number when subtracted using those 2 blood pressure numbers)...because the MAP is such a smaller number. That is what they would be looking for. Since...and I will clear this up...people don't like other people giving medical advice, I would ask your doctor to confirm what they are thinking about. I am giving you a general idea of what we are taught to look for with the numbers when we are doing patient's blood pressures as a registered nurse. Did I confuse you? Hehe. It is amazing but this number is always being looked at for everyone but no one ever tells anyone this. When you have your blood pressure done at the normal general doctor....it is because things are so carefully tracked and monitored in a transplant that you are now hearing about it. It is nothing new...to put you at ease. To clear things up....I am not a know it all.....hehe...and remember to ask your transplant doctor if you are feeling concerned. Sometimes a doctor may mention something in passing and it is hard to think how concerned they are about it...the patient or mum picks it up and then worries because they don't know what the doctor means. So if you approach them and ask you may be able to learn how concerned they are. Does that help?
I am gonna stop talking now.....hehe
Love ya,
Charisse
Thanks for all the pics! Looks like she's a lot happier!
Trust the Lord and His Will. Know that I'm praying!
Psalms 5:11-12 But let all those that put their trust in thee rejoice: let them ever shout for joy, because thou defendest them: let them also that love thy name be joyful in thee. For thou, LORD, wilt bless the righteous; with favour wilt thou compass him as with a shield.
Prayer Bears
No update today...assuming it's computer problems?
There is hope in the Lord! Praying right now!
Psalms 16:7-9 I will bless the LORD, who hath given me counsel: my reins also instruct me in the night seasons. I have set the LORD always before me: because he is at my right hand, I shall not be moved. Therefore my heart is glad, and my glory rejoiceth: my flesh also shall rest in hope.
Prayer Bears
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