Day +72

Wish us luck!!!!!!!!!!!!!! Today is the first day Alicia gets a pass. I am soooo nervous but I know I will do well. She is still saying her tummy hurts, they just gave her some med so hopefully it will kick in and make her belly feel better soon. We are leaving here and just going across the street at 2pm which is in two hours and my stomach feels like it has knots in it.

Well that is jst the beginning of why I am so nervous...... As everyone knows my sisters and neices are on their way here from Kansas, well they drove over 8 hours yesterday and the traffic was very very bad due to it beibg a holiday. They finally decided to stop somewhere called Pochahantis Illinois ( sounds like a fairy tale land to me ) Denise said it looked like something out of The Texas Chainsaw Masacre.

Anyway they got all settled in and Denise texted me and said she was having problems sleeping around 1am , I figured she was just excited so I went to sleep then around 3:30am she called me and said her chest was burning and it felt like she was having a heart attack and she was tingling all over so I told her to wake up my other sister and they called an ambulance and took her to the hospital in the nearest town away. After about an hour of being there and after some drink they had her drink she started feeling a little better and let her leave but they had no idea how to get back to the hotel. of course she left the gps there. It turns out that she had taken an antibiotic that was outdated which caused her to feel this way. I love my sis so much and she is going through so much just t get here to see alicia before she has her surgery next week

Needless to say they are back on the road again, They are about 3 hours out now and I can not wait to see them. I believe Denise is going to bring Kelli and the girls to the RMH where Alicia and I will be and then she will go check in at the hotel and take a nap before she comes back since she is going to stay with Alicia tonight. THANKS SIS

It is time to bath Alicia and get her ready for our Break out. I will let everyone knowhow it goes tomorrow.

Day +71

Alicia seems to be doing alot better still. She is STILL having alot of tummy pains but Dr Davies says it is because her tummy is so little and they are upping her tube feeds to try to wein her off the tpn's. She said today she is going to slow down on them and give her tummy a little break so we might be here a little longer which I am ok with. She did say that she thinks the GVHD is getting better which I am very happy about.

Home Health came by and started teaching me how to administer her meds when we are set free............................. I am a nervous wreck, I hope I do not give her the wrong one or to much. LOL HELP!!!!!!!!!!!!!!!!!!!!!!!

We are still going out on 4 hour pass tomorrow. I am so nervous. But I need to get my feet wet. I decided to just put a permanent thermometer on her forhead, and never unhook her meds so I will not mess up when I hook them back up!!!!!!!!!!!

My sisters are on the road now. They got out of town late because they had to go back three times to have her husband show her how to make something work in the rental van she has. She is so retarded, I can not wait for them to get here.

Well I will let everyone know how things go with our first pass out of here.......wish us luck

Day +69

Alicia got up very early this morning complaining about her tummy hurting. Dr Davie's says it is because they have raised the amount of tube feeds she is getting per hour but she is still saying it is hurting so we will see if her tummy can get used to it.

Well we got the "D" word again yesterday. I was sitting in the parent lounge and in walked Sally with a smile one her face. Sally is the Home Health Nurse who teaches us how to give our children the Iv meds they are sent home on. It has been a big joke with Sally and I when it comes to discharge. She is the one who had taught me everything the last time, over 45 days ago, when we were to leave. Everything thing she taught me way back when Alicia is not even on any more. One was the Cyclosporin which caused Alicia's Press and Seizures. Well needless to say Alicia's name is on the list again. I seen it with my own eye's. It does not say an exact date, it just says sometime next week. Dr Davies says either Wednesday or Thursday, I am sooooooo nervous. Dr Davie's also wants us to do a couple of trial runs before discharge so we a re getting our first pass this Saturday. Alicia nd I are going to the RMH from 2pm to 6pm. She is not allowed to go any where else which is toally fine with me. Denise and Kelli will be here this weekend also so I am so sure this will make Alicia very happy. I am nervous about having her around alot of people but Dr Davies said as long as it is just them and we stay in the room that it should be ok. I am still nervous though.

Denise is going to stay with Alicia Saturday noght so I can get some much needed "My Time" I will hang out with Kelli and the girls at the hotel and Sunday we are taling them to the zoo.

Alicia is asleep now so I better get in a nap while I can. Cross your fingers that this weekend goes well and this is our first step towards home.

Day +66 ( for sure this time )

Today was a very hard one. The good bye's with Daddy and Mommy was very hard. I did the smart thing and went to the RMH for n afternoon napo so I would not have to be here and see all of the sadness. I don't even want to imagine how hard it would be to have to leave. I know how hard it is to stay but I also know the pain must be hard to have to leave her. I seen Ne-Ne and her Mommy and Daddy go through it and it hurts me to see that they have to endure that. Mommy and Daddy will be back hopefully in four weeks around the end of September, and this time they promised to bring the boys. I sooooooo miss them.

Now we are doing the count down til Aunt Kelli and Ne-Ne get here. They are driving from Kansas so it will take around 12 hours ( give or take a few ). They are leaving Friday around noon and driving til around 10pm, then they will get up early Saturday and come the rest of the way. Alicia is very excited to see her Aunt Kelli. She is our oldest sister, she is bringing her girls Kristian and Kortnie also. Alicia is also soooo happy to see Ne Ne again. Denise has been the HUGEST support for us. She has even put off a major surgery just to bring Kelli since Kelli is a scardy cat and will not fly. Cassie is also coming with them. I can not wait to see all of them. We had to get Kristian nd Cassie a special visit so they cn see Alicia, nd Dr Davies has said as long as they wear masks and gloves and gowns that they cn come Saturday and Sunday for 30 minutes with Alicia. Kortine is over the age limit so she will get a longer visit but we will also take the precautions with her as well. Denise is staying the night with Alicia on Saturday so I can hang out with Kelli and the kids for the night at the Hotel and Sunday we are going to take the girls to the zoo.

Alicia's counts have been soaring. Her Anc is way above 20.00, and Wbc is all the way up to 18.00, her Hbg is holding around 10.0 but she is still having problems keeping her own Platelets. Her Gvh on her skin is looking alittle better, but is was every where and will take a while for it all to heal. She is still getting tube feeds since she is still not eating alot. She takes one bite here and there but it is hardley anything.

My very good friend i met here is leaving tomorrow. Her daughter Abby is getting released. I am going to miss Reid very much. She has been a very good friend nd will miss getting to talk to her every day. Although she is getting me pretty good at this web cam she bought me so we promised to web cam every night. GOOD LUCK REID AND ABBY WE WILL MISS YOU!!!!!!!

Well nature calls, Alicia keeps me pretty busy in the changing of dirty diapers. I have turned out to be the Poop Queen.

THE PRINCESS PARADE

YEAH ALICIA FINALLY WAS FEELING WELL ENOUGH TO HAVE THE PRINCESS PARADE. IT WAS SOOOOOOO CUTE. SOME OF HER FRIENDS HERE ON THE BMT FLOOR EVEN JOINED IN, THE ONE IN PINK IS ABBY, AND THE MUSIC THERAPIST, BRIAN, PLAYED MUSIC FROM ENCHANTED THE WHOLE WAY. THANKS AGAIN TO ALL OF OUR FRIENDS AT TALL GRASS IMAGING FOR MAKING THIS POSSABLE. SHE LOOKED SO PRETTY IN HER LITTLE PRINCESS OUTFIT. ALL OF THE NURSE'S STOOD ALONG THE WALL AND CHEERED THEM ALL ON.............

DAY +65 ( I THINK )

I AM SO SORRY ABOUT NOT BEING ABLE TO UPDATE. THE INTERNET IN THE HODSPITAL WAS DOWN FOR A WHILE AND IT HAS BEEN ALOT GOING ON WITH HE MOMMY AND DADDY HERE. ALICIA IS ON CLOUD NINE!!!!!!!!!!!! MY GOOD FRIEND REID IN 522 HAS ALSO HAD MY COMPUTER UPDATING IT AND INSTALLING A WEB CAM FOR US. (THANKS GIRL). AND THANKS TINA FOR LETTING EVERYONE KNOW WE WERE OK, ( YOUR THE BEST, ) BUT NOW WITH EVERYTHING SLOWING DOWN I PROMISE TO KEEP UP, I KNOW THAT ALL OF YOU WERE PROBABLY VERY WORRIED AND I ONCE AGAIN APPOLOGIZE.

ALICIA IS DOING BETTER. SHE IS STILL HAVING TUMMY ACHES BUT THEY SEEM TO COME ALOT MORE ONLY AT NIGHT. SHE STILL IS NOT EATING MUCH BUT THEY HAVE UPPED HER FEEDS AND SHE SEEMS TO BE TOLERATING THEM. THEY HAVE ALSO STARTED WEINING HER STEROIDS A LITTLE MORE FROM WHEN THE UPPED THEM VERY HIGH FOR THE GVH. HER SKINN GVH HAS WENT FROM A RASH TO ALOT OF SPOTS ALL OVER HER BODY BUT THE DOCS SAID THEY WILL TAKE A LONG TIME TO GO AWAY.

I THINK WITH HER MOMMY AND DADDY HERE HAS HELPED HER ALOT. THEY BROUGHT HER ALOT OF TOYS AND SHE HAS BEEN PLAYING ALOT OF GAMES WITH HER DADDY. SHE HAS TOUGHT THEM BOTH HOW TO GIVE THEO HIS MEDS, YES THEO IS STILL HERE. HERE IS SOME PICS OF HER AND DADDY AND ALL THREE OF THEM....


OOPS I MEAN ALL FOUR OF THEM.....


SHE IS STILL VERY WEAK AND IT IS SOOOOOO PAINFUL FOR HER TO WALK BUT WE ARE MAKING HER GET OUT AT LEAST ONCE A DAY AND WALK THE HALLS. SHE COMPLAINS ALOT ABOUT HER LEGS HURTING BUT THIS IS THE ONLY WAY SHE WILL GET STRONGER. WE HAVE TO BRIBE HER AND TELL HER SHE CAN WALK TO ABBY OR ALBERTS ROOM AND THAT SEEMS TO WORK BUT I CAN SEE THE PAIN IN HER EYES.


DENISE AND MY OLDEST SISTER KELLI WILL BE HERE THIS COMING WEEKEND AND I AM SOOOO LOOKING FORWARD TO THEM COMING. NE-NE IS HAVING SURGERY THE WEEK AFTER THEY GET BACK SO PLEASE KEEP HER IN YOUR PRAYERS. SHE PUT IT OFF SO SHE CAN SEE ALICIA ONCE MORE BEFORE, I LOVE HER SO MUCH SHE HAS BEEN A HUGE SUPPORT FOR ME!!!!!!!!!!!!!!!!!!!!!!!

ALICA FINALLY GOT TO HAVE HER PRINCESS PARADE. IT WAS SOOOOO CUTE. IT ENDED UP TUENING INTO A HUGE DEAL ON THE BMT FLOOR. HER FRIENDS ABBY AND ALBERT EVEN GOT TO JOIN IN. SHE LOOKED SO CUTE. AS SOON AS I POST THIS I WILL POST PICTURES OF THE PARADE, I JUST NEED TO DOWN LOAD THEM FIRST.

ONCE AGAIN I AM SORRY IF I HAD ANYONE WORRIED ABOUT US AND I THANK EVERYONE FOR ALL OF THE PRAYERS AND SUPPORT WE ARE GETTING.

Update

Hello everyone,
This is Krisstina updating for Michelle, as the Internet service has been down for 3 days there at the hospital.
Alicia is doing fine. She is very excited awaiting her visit form her mommy and daddy today.
Michelle did want me to let everyone know that Alicia did have her Princess parade and she has pictures to post as soon as she can.
Please keep praying for Alicia to do well and that this GVHD is finally getting better!!
Michelle would love to she the light at the end of the tunnel.

Thanks again for stopping in!
Krisstina

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!!!!!!!!!!)

DAY + 60

WELL THE LAST TWO DAYS HAE BEEN SOOOOOO BUSY. ALICIA IS DOING WAY BETTER TODAY. SHE IS GIVING THEO A PIC LINE LIKE HERS RIGHT NOW. IT IS SO CUTE. I JUST TOOK PICTURES BUT FOR SOME REASON I AM HAVING TROUBLE DOWN LOADING THEM TONIGHT SO I WILL POST THEM TOMORROW.

THEO IS SUCH A LIFESAVER!!!!!!!!!!!!!!!!!!!!!!!!! HE NOW GIVES ALICIA ALL OF HER VITALS. THE NURSE'S LOVE IT BECAUSE THEY USUALLY HAVE TO FIGHT WITH HER FOR A SHILE BEFORE SHE WILL LET THEM DO THEIR JOB. NOW ALL THEY HAVE TO DO IS LET THEO HOLD THE THERMOMETER AND SHE DOES WHAT EVER IS NEEDED. THEO NOW TAKES INSULIN SHOTS ALSO AND HE HAS TO HAE IS SUGAR CHECKED EVERY THREE HOURS LIKE ALICIA. SHE DID GET KIND OF UPSET YESTERDAY THOUGH BECAUSE SHE COULD NOT UNDERSTAND WHY THEO WAS NOT BLEEDING. I REALLY DID NOT KNOW HOW TO OVER COME THAT ONE. LOL. WE ALSO FOUND OUT THAT THEO IS VERY MUCH A BOY YESTERDAY. ALICIA WANTED TO PUT A DIAPER ON HIM LIKE SHE HAS AND WHEN I WENT TO HELP HER I ABOUT FELL OUT. YES HE HAS IT ALL!!!!!!!!!!!!!!!!!!! SHE DID NOT SEE AND I HURRIED UP AND TOLD HER THEO IS A BIG BOY AND HE IS POTTY TRAINED AND DOES NOT NEED A DIAPER. SHE WAS COOL WITH THAT THANK GOD!!!!!!!!!!!!!!!!!!

ALICIA GOT HER PIC IN THIS MORNING IN HER ARM AND I AM SOOOOO HAPPY. FOR THE LAST TWO MORNINGS THE CVC TEAM HAS HAD TO COME IN AND DO HER DRAW BLOODS WITH INSERTING A FRESH IV. ALICIA DID VERY WELL AND DID NOT CRY BUT I CAN TELL SHE IS GETTING VERY IRRITATED. THEY HAD A PROBLEM PUTTING THE PIC IN HER RIGHT ARM AND AFTER TRYING FOR ABOUT A HALF OF AN HOUR THEY MOVED TO THE LEFT AND GOT IT RIGHT AWAY. IT SEEMS TO BE WORKING WELL WHICH I AM SO RELIEVED.

HER MAIN ISSUE IS HER BLOOD SUGAR AND BLOOD PRESSURE. YESTERDAY SHE ACTUALLY WENT DOWN TO 23 AND WENT INTO A DIABETIC SHOCK BUT THE BROUGHT HER OUT OF IT FAST AND THEY ARE WATCHING HER VERY CLOSE. HER BP HAS ALSO BEEN BEEN ERY HIGH FOR TWO DAYS NOW BUT IT IS UNDER CONTROL WITH ALOT OF MEDS.

I WANT TO THANK KAYLA VERY MUCH FOR THE CAMP SUNSHINE SHIRT THAT SHE SEN TO ALICIA. SHE MADE ME OUT IT ON HER RIGHT AWAY WHEN SHE OPENED IT. THANKS KAYLA!!!!!!!!!!!! MY FAVORITE WAS THE POWER PUFF GIRL MOVIE THOUGH. I WAS SO HAPPY TO SEE THAT...... NO MORE SPONGE BOB!!!!!!!!!!!!!!! AT LEAST FOR TODAY. THANKS AGAIN KAYLA.

WELL IT IS GETTING LATE AND ALICIA AND THEO NEED THEIR MEDS AND PJ'S ON. ( I WILL DRESS THEO :)

THANKS AGAIN FOR ALL OF THE PRAYERS FOR ALICIA, AND A SPECIAL THANKS TO YOU DONNA FOR WHAT YOU DONE FOR US!!!!!!!!!!!!!!!!!!!!!!

SURGERY UPDATE

I THINK I WILL START THIS ONE ON A LITTLE MORE POSITIVE NOTE WITH PICTURES OF ALICIA AND THEO DURING THEIR SLUMBER PARTY AS I PROMISED I WOULD FROM MY POST EARLIER THIS MORNING BEFORE WE WENT DOWN TO THE OR.......................
AREN'T THEY JUST THE CUTEST COUPLE!!!!!!!!!!!!!!!!! THEO GETS TO SPEND A LITTLE MORE TIME WITH ALICIA TODAY AS WELL. SHE IS VERY HAPPY ABOUT THAT. THEY HAD CAME IN EARLIER TO GET HIM BUT ALICIA STARTED CRYING AND THE CHILD LIFE LADY DID NOT HAVE THE HEART TO TAKE HIM WITH WHAT ALICIA HAD JUST WENT THROUGH. ( THANKS )

THE REMOVING OF THE CENTRAL LINE WENT WELL, WE FINALL LEFT THE ROOM AFTER MUCH CONFUSION AROUND 9AM HERE IS ALICIA ON HER WAY TO THE OR.....


SHE WAS ONLY IN THE OR FOR ABOUT 45 MINUTES AND THE DOC CAME OUT AND SAID EVERY THING HAD WENT FINE, HE SAID THEY HAD REMOVED THE C-LINE AND THERE WAS ONLY A LITTLE BAND AID IN THE SPOT IT WAS AT, HE ALSO SAID THAT THEY DID NOT HAVE A PROBLEM REPLACING HER NG TUBE AND THAT THEY HAD PLACED TWO REGULAR IV'S ONE IN EACH WRIST THAT WOULD BE USED UNTIL MONDAY WHEN THE PIC LINE WOULD BE PLACED. I WAS SO HAPPY EVERY THING WAS GOING SO WELL BUT I SHOULD OF KNOWN BETTER!!!!!!!!!!!!!!! WE GOT ALICIA BACK TO THE ROOM AND IN HER BED AND FINALLY GOT HER COMFORTABLE, THIS IS WHAT MY BABY LOOKED LIKE AT FIRST.....................
I KEPT WONDERING HOW IN THE WORLD WOUOD SHE FEED HER SELF OR COLOR OR PLAY WITH THEO. SHE COULD NOT MOVE EITHER WRIST, THIS IS GOING TO BE A LONG WEEKEND. BUT AT LEAST EVERYTHING WAS GOING GOOD.

SILLY ME.............. I SHOULD KNOW BY NOW THAT IT WAS NOT GOING TO GO THAT SMOOTH. THE FIRST THING THE NURSE DID WAS CHECK ALICIA'S SUGAR LEVEL AND IT WAS ALL THE WAY DOWN TO 32. I ABOUT FREAKED. I STARTED SHOVING PUDDING AND JUICE DOWN HER AND THE NURSE STARTED GETTING THE MEDS SHE NEEDED TO GET HER HOOKED UP TO GET THE LEVEL UP AND I COULD NOT BELIEVE WHAT I HEARD NEXT. BOTH, YES I SAID BOTH OF ALICIA'S IV'S WOULD NOT FLUSH. THEY BOTH HAD CAME OUT THAT FAST. MY BABY THAT IS IN THE MIDDLE OF A BMT HAD NO IV ACCESS. I WAS THINKING IN MY HEAD THAT THIS IS ALL JUST A BAD DREAM AND THIS WAS NOT HAPPENING. SO THEY CALLED THE IV TEAM WHICH TOOK ALMOST AN HOUR TO GET HERE AND ANOTHER HOUR TO FINALLY GET TWO MORE IV'S GOING AND THIS IS WHAT SHE LOOKS LIKE NOW........
THEY HAD TO PUT THREE BOX'S OF APPLE JUICE THROUGH HER NG TUBE WHICH ALSO NOW HAS CAME OUT OF PLACEMENT. OMG I NEED A VERY STIFF DRINK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

X-RAY IS ON ITS WAY DOWN NOW TO REPLACE THE TUBE. PLEASE PRAY THIS DAY IS OVER WOTH SOON. ( AND IT IS ONLY 3:20 )

SURGERY UPDATE

I THINK I WILL START THIS ONE ON A LITTLE MORE POSITIVE NOTE WITH PICTURES OF ALICIA AND THEO DURING THEIR SLUMBER PARTY AS I PROMISED I WOULD FROM MY POST EARLIER THIS MORNING BEFORE WE WENT DOWN TO THE OR.......................
AREN'T THEY JUST THE CUTEST COUPLE!!!!!!!!!!!!!!!!! THEO GETS TO SPEND A LITTLE MORE TIME WITH ALICIA TODAY AS WELL. SHE IS VERY HAPPY ABOUT THAT. THEY HAD CAME IN EARLIER TO GET HIM BUT ALICIA STARTED CRYING AND THE CHILD LIFE LADY DID NOT HAVE THE HEART TO TAKE HIM WITH WHAT ALICIA HAD JUST WENT THROUGH. ( THANKS )

THE REMOVING OF THE CENTRAL LINE WENT WELL, WE FINALL LEFT THE ROOM AFTER MUCH CONFUSION AROUND 9AM HERE IS ALICIA ON HER WAY TO THE OR.....


SHE WAS ONLY IN THE OR FOR ABOUT 45 MINUTES AND THE DOC CAME OUT AND SAID EVERY THING HAD WENT FINE, HE SAID THEY HAD REMOVED THE C-LINE AND THERE WAS ONLY A LITTLE BAND AID IN THE SPOT IT WAS AT, HE ALSO SAID THAT THEY DID NOT HAVE A PROBLEM REPLACING HER NG TUBE AND THAT THEY HAD PLACED TWO REGULAR IV'S ONE IN EACH WRIST THAT WOULD BE USED UNTIL MONDAY WHEN THE PIC LINE WOULD BE PLACED. I WAS SO HAPPY EVERY THING WAS GOING SO WELL BUT I SHOULD OF KNOWN BETTER!!!!!!!!!!!!!!! WE GOT ALICIA BACK TO THE ROOM AND IN HER BED AND FINALLY GOT HER COMFORTABLE, THIS IS WHAT MY BABY LOOKED LIKE AT FIRST.....................
I KEPT WONDERING HOW IN THE WORLD WOUOD SHE FEED HER SELF OR COLOR OR PLAY WITH THEO. SHE COULD NOT MOVE EITHER WRIST, THIS IS GOING TO BE A LONG WEEKEND. BUT AT LEAST EVERYTHING WAS GOING GOOD.

SILLY ME.............. I SHOULD KNOW BY NOW THAT IT WAS NOT GOING TO GO THAT SMOOTH. THE FIRST THING THE NURSE DID WAS CHECK ALICIA'S SUGAR LEVEL AND IT WAS ALL THE WAY DOWN TO 32. I ABOUT FREAKED. I STARTED SHOVING PUDDING AND JUICE DOWN HER AND THE NURSE STARTED GETTING THE MEDS SHE NEEDED TO GET HER HOOKED UP TO GET THE LEVEL UP AND I COULD NOT BELIEVE WHAT I HEARD NEXT. BOTH, YES I SAID BOTH OF ALICIA'S IV'S WOULD NOT FLUSH. THEY BOTH HAD CAME OUT THAT FAST. MY BABY THAT IS IN THE MIDDLE OF A BMT HAD NO IV ACCESS. I WAS THINKING IN MY HEAD THAT THIS IS ALL JUST A BAD DREAM AND THIS WAS NOT HAPPENING. SO THEY CALLED THE IV TEAM WHICH TOOK ALMOST AN HOUR TO GET HERE AND ANOTHER HOUR TO FINALLY GET TWO MORE IV'S GOING AND THIS IS WHAT SHE LOOKS LIKE NOW........
THEY HAD TO PUT THREE BOX'S OF APPLE JUICE THROUGH HER NG TUBE WHICH ALSO NOW HAS CAME OUT OF PLACEMENT. OMG I NEED A VERY STIFF DRINK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

X-RAY IS ON ITS WAY DOWN NOW TO REPLACE THE TUBE. PLEASE PRAY THIS DAY IS OVER WOTH SOON. ( AND IT IS ONLY 3:20 )

DAY +58

WE ARE ON OUR WAY TO THE OR TO HAVE HER LINE REMOVED. WISH US LUCK!!!!!!! ALICIA DID NOT SLEEP WELL LAST NIGHT ALTHOUGH SHE DID LET ME GET SOME REST. THE NURSE SAID SHE WAS UP TIL 4AM .

IT MIGHT OF BEEN DUE TO HER SLUMBER PARTY LAST NIGHT. THEO GOT TO SEND THE NIGHT. I TUCKED THEM BOTH IN AROUND 10PM BUT I HEARD HER TALKING TO HIM ALL NIGHT. I HAVE PICTURES AND WILL POST THEM WHEN WE RETURN FROM THE OR.


THE RASH HAS SPREAD EVERY WHERE. THEY ARE GIVING HER ANOTHER BOLUS OF STEROIDS JUST AS SOON AS WE GET BACK. SHE ALSO HAD ISSUES WITH HER BLOOD PREASSURE BUT IT IS UBDER CONTROL NOW.

THEY ARE HOPING HER REGULAR IV'S THEY PLACE TODAY IN THE OR WILL AT LEAST LAST UNTIL MONDAY WHEN THEY PUT THE PIC LINES IN HER ARMS.

TRANSPORT IS HERE. PLEASE PRAY THAT THIS WILL HELP GET RID OF HER BACTERIA IN THE BLOOD STREAM.

DAY +57

I JUST LEARNED AN HOUR AGO THAT ALICIA WILL BE GOING TO SURGERY LATER THIS EVENING OR FIRST THING IN THE MORNING TO HAVE HER CENTRAL LINE REMOVED. THEY ARE GOING TO PUT IN THREE TEMP REGULAR IV'S AND WAIT 24 HOURS AND THEN PUT PIC LINES IN EACH ARM. THIS WILL LET THE ANTIBIOTIC HOPEFULLY TAKE OVER AND GRET RID OF THE BACTERIA IN HER BLOOD STREAM. THEY SAID THE KIND OF BACTERIA IT IS IT WILL JUST STICK TO HER C-LINE INSIDE OF HER. THEY MADE HER NPO SINCE THIS MORNING BUT SHE IS NOT EATING ANY WAY.

SHE FINALLY BROKE HER FEVER AROUND 5 AM AND HER HEART RATE WENT DOWN SOON AFTER THAT. THEY WANT TO WAIT TO MAKE SURE SHE IS STABLE WITH HER VITALS BEFORE SHE IS TAKEN TO SURGERY.

HER RASH HAS ALSO GOTTEN HORRIBLE. THEY SAID THEY ARE MORE THAN CERTAIN NOW THAT IT IS ALSO GVHD. BOY AM I FOREVER TIRED. THEY HAVE ONCE AGAIN RAISED HER STEROIDS, (O BOY THAT IS NOT WHAT HER LITTLE ATTITUDE NEEDS )

ONE GOOD THING IS WE DID FIND OUT THAT SHE IS 100% DONOR WHICH MADE ME VERY HAPPY. HER COUNTS ARE ALSO VERY VERY GOOD. HER WBC IS AT 8.1. HBG 9 ( SHICH THEY DID GIVE HER RED CELLS THIS MORNING FOR THE SURGERY ) AND HER ANC IS AT 5.96. HER PLATELETS ARE AT 160 BUT SHE DID GET THOSE YESTERDAY SINCE THEY WERE DOWN TO 10.

I AM SOOOOOOOOOOOOO READY FOR MER MOMMY AND DADDY TO GET HER. I NEED REST VERY BAD. THIS IS WEARING ON ME SO FAST. I JUST WANT MY BABY TO GET BETTER.

DAY +56 UPDATE

I WAS JUST TOLD 30 MINUTES AGO THAT THE INFECTION THAT WAS IN HER C-LINE THIS MORNING HAS MOVED INTO HER BLOODSTREAM. IT IS A BACTERIA CALLED ENTEROCOCCUS. SHE HAS HAD A FEVER FOR THE PAST FOUR HOURS AND HER HEART RATE HAS BEEN BETWEEN 180-230 FOR THAT LONG AS WELL.

THEY ARE PUTTING HER BACK ON VANCOMYCIN FOR ANOTHER 14 DAYS.

SHE HAS NOT LIFTED HER HEAD OFF THE PILLOW ALL DAY. SHE WILL NOT EAT OR EVEN TAKE A DRINK.

I SO HOPE TOMORROW IS A BETTER DAY FOR HER. I CAN NOT WAIT TIL HER MOMMY GETS HERE!!!!!!!!!!!!! THAT WILL BE BETTER THAN ANY MEDICINE IN THIS WHOLE HOSPITAL.

DAY +56

O MY WHERE TO BEGIN.................................... I GUESS THE BEGINNING WOULD BE THE BEST.

YESTERDAY STARTED OFF TO BE AN AWESOME DAY. ALICIA WOKE UP ( WITH NO FEVERS AGAIN. ) SHE WAS SMILING AND SHE LOOKED THE BEST SHE HAS TO ME IN A VERY LONG TIME.

THERAPY CAME IN AROUND 11 AM AND WANTED TO WORK WITH ALICIA AND OUT OF THE BLUE I SAID "I WANT HER UP OUT OF THIS BED AND OUT OF THIS ROOM, THAT WOULD BE THE BEST THERAPY FOR HER." SO I THROUGH SOE PJ'S ON HER AND DOWN TO THERAPY WHE WENT........................ HERE ARE PICTURES OF PROOF..............

SHE WAS HAVING ALOT OF PROBLEMS STANDING UP STRAIGHT, AND SHE ONLY MADE IT TO THE ELEVATORS WALKING. SHE KEPT SAYING I CAN'T, I CAN'T. BUT SHE DID!!!!!!!!!!!!!!!!!!!!!!!! TODAY OUR PLANS ARE TO ONCE AGAIN HAE OUR PRINCESS BALL, BUT THIS TIME I HAVE SAID I WANT IT DONE IN THE THERAPY ROOM DOWN STAIRS SO I CAN KILL TWO BIRDS WITH ONE STONE, BUT WISHFUL THINKING AGAIN.......

LAST NIGHT ALICIA'S TUMMY WAS HURTING ALOT ALOT MORE THAN USUAL. I CRAWLED IN BED WITH HER AND WAS CUDDLING HER AND THE NEXT THING I KNOW SHE WAS WAKING ME UP AND TELLING ME TO GET IN MY OWN BED CAUSE I WAS SNORING. LOL

I WENT TO HOOK BACK ON ONE OF HER LEADS TO THE MONITOR AND NOTICED ALICIA HAD A RASH ON HER CHEST SO I STARTED LOOKING A LITTLE MORE AND SHE HAS SOME ON HER NECK AND HER BACK. IT REALLY IS NOT ITCHING HER, THE DOCTORS ARE GOING BETWEEN IF IT IS A REACTION TO A MED OR IF IT IS MORE GVH. THEY HAVE BEEN GIVING HER BENADRYL AND STEROID CREAM TO COVER BOTH UNTIL THEY FIGURE OUT WHICH OF THE TWO IT IS.

NO I AM NOT DONE........I FINALLY GOT HER TUMMY CALMED DOWN AFTER ONE OF THE HUGEST POOPS I HAVE EVER SEEN, AND THEN ALICIA STARTED OUT OF NOWHERE CRYING AND SAYING I WAS MEAN TO HER AND DID NOT LOVE ANY MORE AND I WAS A BAD GIRL AND THAT NE NE CAN NOT COME SEE ME ANY MORE AND THAT I MADE HER CRY.............. SO ONCE AGAIN I CRAWLED IN BED WITH HER AND CONVINCED HER THAT SHE WAS THE MOST IPORTANT PERSON TO ME AND THA TI LOVED HER TO ETERNITY AND THAT I WAS SOOO SORRY I MADE HER CRY AND I BEGGED HER TO PLEASE LET NE NE STILL COME SEE ME, WE GOT ALL OF THAT BEHIND US AND FINALLY AROUND ONE AM SHE WAS ASLEEP ( THEY SAY IT WAS CAUSED FROM THE STEROIDS NOT ME BEING MEAN TO HER )

STILL NOT DONE YET................... AROUND ONE THIRTY I WAS FINALLY DOSING OFF WHEN THE NURSE WOKE ME UP AND SAID THAT ONE OF ALICIA'S BLOOD CULTURES HAD CAME BACK AND IT HAD SAID THERE WAS A POSTIVE RESLUT THAT SOME TYPE OF BACTERIA WAS GROWING IN THE WHITE LOOMAN IN HER CENTRAL LINE. SHE WANTED TO LET E KNOW THAT THEY WERE GOING TO START HE ON ANOTHER ANTIBIOTIC, WHICH MEANT MORE VITALS, WHICH MEANT NO SLEEP. ALL I COULD DO WAS LAUGH..... I SAID " YOU HAVE GOT TO BE KIDDING ME". I SAID "OK PLEASE DIRRECT ME TO THE 10TH FLOOR" I THINK I WILL JUST JUMP LOL.... BUT KNOWING MY LUCK I WOULD JUST BREAK BOTH OF MY LEGS AND THAT WOULD PROBABLY HURT ALOT!!!!!!!!!!!!!!! AT LEAST I STILL HAVE MY SENCE OF HUMOR!!!!!!!!!!!

I DON'T KNOW JUST WHAT EXACTLY IS GOING TO HAPPEN WITH THE INFETION IN HER LINE YET. HOPEFULLY THE ANTIBIOTIC WILL GET RID OF IT OR I HEARD THAT THEY WILL HAVE TO TAKE IT OUT AND PUT IN A PIC LINE WHICH IS NOT AS GOOD AS THE C-LINE. I WILL LET EVERYONE KNOW JUST AS SOON AS I FIND OUT.

PLEASE PRAY FOR SLEEP FPR ME. ALICIA IS ASLEEP NOW AND I TOLD EVERYONE NOT TO BOTHER HER IF YOU ARE NOT PUTTING HER MEDS IN OR IF SHE STOPS BREATHING. SHE NEEDS REST VERY BAD. ERIKA AND ANSHON WILL BE HERE A WEEK FROM TOMORROW WO I KNOW I HAVE REST COMING SOON.

THANKS FOR ALL OF THE SUPPORT AND PRAYERS.

DAY +55

OK OK OK SO ONCE AGAIN SORRY FOR NOT UPDATING YESTERDAY. ALICIA HAD A VERY GOOD DAY. IT WAS JUST ME THAT WAS HAVING ISSUE'S. I HAD A HORRIBLE HEAD ACHE. I AM SURE IT HAD ALOT TO DO WITH STRESS BUT I COULD NOT GET RID OF IT TO SAVE MY LIFE. IT WAS POUNDING ALL DAY.

I DO FEEL ALOT BETTER TODAY THOUGH. AT 8:30 THIS MORNING I HAD A MASSAGE AND SHE WORKED OUT A LOT OF TENSION IN MY NECK AND SHOULDERS AND IT MADE MY HEAD FEEL ALOT BETTER. I HAD IT DONE IN A CLOSET. I POOP YOU NOT... IT WAS IN AN ACTUAL CLOSET WITH A MASSAGE CHAIR AND SOME VERY SOOTHING MUSIC. MY FOOT FELL ASLEEP ALSO.

ALICIA HAS BEEN DOING VERY WELL FOR THE LAST TWO DAYS. THEY HAVE HER ON TUBE FEEDS AND THEY ARE STARTING TO SWITCH ALOT OF MEDS FROM IV TO ORAL. THE DOCTORS ARE SAYING THAT MAYBE IF SHE KEEPS MOVING IN THIS DIRECTION WE MIGHT BE OUT OF THE HOSPITAL AND TO THE RONALD MCDONALD HOUSE BY LABOR DAY. THEY SAID MAYBE AROUND DAY +70. THAT WOULD BE SO COOL!!!!!!!!!!!!

SHE IS STILL HAVING TUMMY PAINS BUT THEY ARE BEING MANAGEDED ALOT BETTER NOW. HER POOP HAS SLOWED DOWN ALOT ALTHOGH WHEN SHE DOES HAVE THEM THEY ARE ALOT STILL BUT NOT AS FREQUENT WHICH IS WHAT IS EXPECTED.

I HOPE EVERYONE HAD A BLAST AT CAMP.

DAY +53

IT IS SO HARD TO BELIEVE WE ARE OVER HALF WAY TO THE "MAGIC NUMBER" EVERYONE HAS ALWAYS TALKED ABOUT WHEN COMING TO TRANSPLANT. I HAVE HEARD ALOT OF PEOPLE ALWAYS TALK ABOUT THE 100 DAYS. BUT THAT IS NOT REALITY TO ME NOW. I DO NOT THINK THAT WE WILL BE GOING ANY WHERE NEAR KANSAS AT OUR 100 DAYS, BUT I AM OK WITH THAT . MY GOAL AT THIS POINT IS GETTING ALICIA WELL ENOUGH TO EVEN LEAVE THE HOSPITAL AND I DO NOT EVEN SEE THAT HAPPENING FOR AT LEAST A COUPLE OF MORE WEEKS AS LONG AS SHE KEEPS DOING WELL.

NO FEVERS AGAIN YESTERDAY OR THIS MORNING!!!!!!!!!!!!!!!!! SHE EVEN ATE A LITTLE YESTERDAY WHICH MADE ME SOOOOOO HAPPY. I BATHED HER THIS MORNING WHICH RELAXED HER AND SHE IS SLEEPING AGAIN. I AM VERY HAPPY WITH THE LITTLE PROGRESS I AM SEEING IN HER. I WANT TO TAKE IT SLOW AND NOT RUSH IT.

I WOULD LIKE A GOAL THOUGH. SOMETHING TO WOR TOWARDS IN ORDER FOR US TO BE ABLE TO GET OUT. I BY NO MEANS AM READY NOW, BUT IF I JUST KNEW WHAT IS NECESSARY THAN IT WOULD HAVE SOMETHING FOR ME TO WORK TOWARDS.

THEY HAVE NOT DID ROUNDS YET THIS MORNING BUT HER LPN CAME THIS MORNING AND THEY ARE TALKING OF STARTING SOME TUBE FEEDS TO SEE IF SHE CAN TOLERATE THEM, I AM KINDA HAVING CONFLICTING THOUGHTS ABOUT THAT BECAUSE SHE IS STILL HAVING ALOT OF TUMMY PAINS BUT I AM NOT TOTALLY AGIANST TRYING TO SEE IF IT MIGHT HELP. WE WILL JUST HAVE TO SEE WHAT THE DOC SAYS.

HOPEFULLY IF SHE FEELS WELL THIS AFTERNOON OR TOMORROW WE WILL BE ABLE TO HAVE OUR LONG AWAITED PRINCESS PARTY. I HAVE THE DRESS AND WHOLE OUTFIT THAT MY MOM'S CO-WORKERS SENT HER HANGING WHERE SHE CAN SEE THEM AND WE TALK ABOUT OUR BALL EVERY DAY. SO HOPEFULLY IT WILL COME TRUE SOON.

YESTERDAY ALICIA HAD COERED HER BED IN STICKERS THAT BONNIE AND ALL THE CHILDREN HAD SENT HER IN THE BOX LAST WEEK. SHE DID THIS WHEN I HAD LEFT THE ROOM AND WENT TO THE PARENT LOUNGE. WHEN I WALKED IN SHE JUST GIGGLED AND ALL I COULD DO WAS SHAKE MY HEAD. I TOOK A PICTURE BUT RETARD ME FORGOT THE MEMORY CARD AGAIN SO YOU JUST HAVE TO IMAGINE ABOUT 100 STICKERS ALL OVER HER BED.

THANKS AGIN EVERYONE FOR CHECKING ON ALICIA. I COULD NOT DO THIS WITHOUT EACH AND EVERYONE OF YOU.

DAY +52

ONCE AGAIN SORRY FOR NOT UPDATNG YESTERDAY. THIS TIME IT WAS ON PURPOSE THOUGH. YESTERDAY MORNING ALICIA WOKE UP WITH NO FEVER, THAT WAS THE FIRST MORNING WITH NO FEVER IN A WHILE SO I DECIDED NOT TO GET EXCITED. I REALIZED EVERY TIME SHE WOKE WITH NO FEVER AND I GOT ALL WORKED UP AND EXCITED THAN IT WASN'T TO LONG BEFORE SHE SPIKED ONE. SO I TOOK YESTERDAY MINUTE BY MINUTE AND IT WORKED. SHE OFFICIALLY HAS NOT HAD A FEVER FOR 38 HOURS. ( I AM NOT GETTING EXCITED THOUGH :) THIS MORNING SHE WAS EVEN NICE TO ERIN ( HER NURSE ) I WAS PRETENDING TO BE ASLEEP BECAUSE EERYONE TENDS TO THINK ALICIA IS EVEN WORSE WHEN I AM AROUND AND SHE DOES VERY WELL WITH THE NURSES WHEN I AM NOT IN THE ROOM. ( SURELY NOT :) SO FAR SO GOOD THIS MORNING ALSO. WE ARE ON OUR 987,098TH EPISODE OF SPONGE BOB.

SHE HAS STILL BEEN COMPLAINING ALOT THAT HER TUMMY HURTS. I BELIEVE THEY ARE GOING TO DO ANOTHER CT ON HER STOMACH TODAY TO SEE HOW THE FLUID IS THAT THEY SEEN TWO WEEKS AGO WHILE WE WERE IN ICU. I DO HAVE GOOD NEWS. THEY DID A CT ON ALICIA FRIDAY OF HER HEAD AND THE PRESS IS GONE!!!!!!!!!!!!!!!!!!!!!! I WAS SO HAPPY ( AND YES I DID GET EXCITED ABOUT THAT ONE ). I NEEDED SOME GOOD NEWS VERY BAD AND IT CAME JUST AT THE RIGHT TIME. I AM SO THANKFUL THAT SHE DOES NOT HAVE ANY PERMANENT DAMAGE FROM THE PRESS. SHE WILL STILL BE ON THE SEIZURE MEDICINE FOR AT LEAST ANOTHER 6 MONTHS BUT I CAN LIVE WITH THAT.

I HOPE EVERYONE IS HAVING ALOT OF FUN AT CAMP. I MISS BEING THERE SOOOOO BAD. YESTERDAY WHILE ALICIA WAS SLEEPING THAT IS ALL I COULD THINK ABOUT. THE COSTUME DANCE WAS LAST NIGHT AND THAT IS ALWAYS ALICIA'S FAVORITE. RACHEL AND KRISTIN HAD TO BE WORE OUT BY THE TIME THE NIGHT WOULD END. ALICIA WOULD TAKE TURNS HAVING THEM PICK HER UP AND DANCE. ALICIA LOVES TO DANCE AND SHE CAN GET HER LITTLE BUTT MOVING PRETTY GOOD. IT WAS SO CUTE TO SEE HER AND EMMA AND HAYLEE DANCE LAST YEAR. AND THE TALENT SHOW WAS ANOTHER ONE OF ALICIA'S FAVORITES. WE HAD ALREADY STARTED WORKING ON A SONG SHE WAS GOING TO SING THIS YEAR. SHE WAS GOING TO SING "YES JESUS LOVES ME" AND SHE HAD LEARNED TO SIGN THE WHOLE SONG AS SHE WAS SINGING IT. I TRUELY HOPE EVERYONE IS HAVING ALOT OF FUN, AND THANKS TO EVERYONE WHO HAS ASKED ABOUT US ( SMILE TINA ) AND THANKS KAYLA FOR CALLING LAST NIGHT. IT FELT SO GOOD SO HEAR THE KIDS LAUGHTER IN THE BACK GROUND. I CAN NOT WAIT TO SEE ALL THE PICTURES. I KNOW THAT WILL MAKE ALICIA SMILE.

NEXT YEAR WE WILL BE THERE. ALICIA AND EMMA WILL BE RUNNING IN THE HALL AND ALICIA WILL SING HER LITTLE SONG AND I WILL BE SOOOOO HAPPY TO SEE EVERYONE!!!!!!!!!

DAY +51

ANOTHER DAY WITH FEVERS. THIS IS GETTING SOOOOO FRUSTRATING AND I THINK THE DOCS CAN SEE THAT I AM GETTING IRRITATED. I KNOW THEY ARE DOING THE VERY BEST JOB THEY CAN BUT I JUST WANT SOME ANSWERS!!!

ALICIA WOKE UP WITH A 103 TEMP AND HER HEART RATE WAS IN THE 180'S. IT HAS BEEN THIS WAY ALL MORNING. SHE IS COMPLAINING ALOT OF HER STOMACH HURTING STILL ALSO. I HAVE BEEN KEEPING ICE RAGS ON HER FORHEAD AND BACK OF HER NECK AND THAT SEEMS TO RELAX HER SO SHE CAN SLEEP. THEY ARE ALSO PUTTING HER BACK ON A CONSTANT MORPHINE PUMP AGAIN. HOPEFULLY THIS WILL MAKE HER COMFORTABLE UNTIL THEY CAN FIND OUT WHAT IS WRONG.

THEY ARE RUNNING ALOT MORE TESTS TODAY. THEY PULLED CULTURES DURING HER HIGHEST FEVER WHICH THEY HAVE BEEN DOING FOR WEEKS BUT SO FAR THOSE ARE ALL NEGATIVE LIKE THEY ALWAYS HAVE BEEN. TODAY THEY ARE ALSO DOING ANOTHER CT ON HER HEAD TO MAKE SURE THE PRESS IS GOING AWAY. THEY HAVE ALSO TAKEN CULTURES FROM BOTH OF HER CENTRAL LINES TO CHECK FOR INFECTION IN THEM AS WELL AS A VIRAL/FUNGAL BLOOD TEST. WHAT EVER ALL THAT IS I HAVE NO CLUE. I JUST HOPE THEY FIND OUT WHAT IS GOING ON AND FIX IT!!!!!!!!!!!!!!!!!!!!!!!

ERIKAN AND ANSHON WILL BE HERE TWO WEEKS FROM TODAY. I AM SOOOO GLAD I WILL BE GETTING MORE REST AND DENISE AND KELLI MY SISTERS WILL BE HERE THE WEEKEND AFTER!!!!!!!!!!!!!!!!!!!

PLEASE KEEP PRAYING FOR MY BABY. I AM SOOOOOOOOOOOOOOOO TIRED!!!

TRANSPORT IS HERE TO TAKE HER TO CT SO I WILL UPDATE LATER.

DAY +50

WE HAD A PRETTY GOOD DAY YESTERDAY. AROUND EARLY AFTERNOON ALICIA STARTED ACTING MORE LIKE HER SELF. SHE ATE NOODLES WHICH SEEMS TO BE NOW ALL SHE WANTS. SHE EVEN GOT OUT OF BED FOR THE THERAPIST AND HELPED WASH HER BABY DOLLS HAIR. YESTERDAY WAS A DAY SHE HAS NOT HAD IN A LONG TIME. WE PLAYED AND PLAYED AND PLAYED SOME MORE. WE WERE ABOUT TO HAVE OUR PRINCESS BALL WHICH WE TALK ABOUT EVERYDAY SINCE HER MOMMY AND HER WERE NOT ABLE TO HAVE ONE SINCE SHE HAS NOT FEALT WELL ENOUGH IN SO LONG BUT ONCE AGIAN SHE STARTED HAVING TUMMY PAINS SO WE HAD TO PUT OFF OUR BALL FOR ANOTHER DAY AGAIN. SHE WANTS TO DRESS UO VERY BAD IN THE PRINCESS OUTFIT THAT MY MOMS FRIENDS AT TALL GRASS SENT HER, WE TAKE IT OUT OF THE BOX EVERYDAY AND WEAR THE TIERRA AND JEWLERY BUT WE ARE LONGING FOR THE DAY WE CAN HAVE OUR PRINCESS BALL!!!!!!!!!!!!

ALSO YESTERDAY ALICIA RECIEVED A BOX FROM SOME VERY SPECIAL KIDS. A VERY SPECIAL LADY NAMED BONNIE ( YOU ARE OUR ANGEL SENT FROM GOD I TOLD ALICIA ) WHICH WE HAVE NEVER MET BEFORE EVER. INSIDE WERE SOME VERY AWESOME CARDS MADE FROM THE CHILDREN IN HER NEIGHBORHOOD AND HER DAUGHTERS FRIENDS. THESE CARDS WERE SOOOOOO AWESOME. YOU CAN TELL THESE CHILDREN TOOK ALOT OF TIME FOR ALICIA AND MADE THEM !!!PERFECT!!!!! THEY WERE FROM CHILDREN AS YOUNG AS THREE AND AS OLD AS 15 ( I HOPE I HAVE THAT RIGHT. THEIR WAS EVEN A LITTLE BOY WHO IS THE SAME AGE AS ALICIA. I CRIED BIG TEARS AS I READ THESE CARDS. THESE CHILDREN HAVE NEVER MET ALICIA, AND FOR THEM TO TAKE TIME TO DO THIS JUST MADE OUR WHOLE DAY. I THINK I LOST IT WHEN I SEEN THAT THEIR DOGS EVEN MADE CARDS, THAT IS WHEN I COULD NOT STOP THE TEARS. I FINALLY FELT LIKE I WAS NOT ALONE AT THAT MOMENT. ALICIA LOVED EVERYTHING IN THE BOX. THANK YOU SO MUCH BONNIE FOR MAKING OUR DAY YESTERDAY. HERE ARE SOME PICTURES OF ALICIA GOING THROUGH THE BOX...

AND TO MAKE THE DAY BETTER SHE ALSO GOT ANOTHER SPECIAL VISIT FROM THEO. SHE WAS SO HAPPY YESTERDAY AND I WAS SO GLAD TO SEE HER FINALLY HAVING A GOOD DAY. HERE ARE HER AND THEO JUST HANGING OUT ...................BUT IT WAS JUST MY LUCK THAT THE END TO A GOOD DAY COULD NOT END IN HARMONY... ALICIA STARTED HAVING BAD TUMMY ACHES AGAIN AND AROUND ONE AM THE FEVER CAME BACK. I KEPT COOL RAGS ON HER HEAD ALL NIGHT BUT SHE STILL HAS IT THIS MORNING. THEY HAVE CALLED IN THE PAIN MANAGEMENT TEAM TO SEE IF THEY CAN CONTROL THE PAIN A LITLE BETTER. THEY ARE PUTTING HER ON METHADONE NOW THROUGH HER NG TUBE. I SURE HOPE THIS MAKES HER COMFORTABLY UNTIL THEY CAN GET THIS NASTY GVH UNDER CONTROL. I AM GETTING VERY TIRED OF SEEING THE LOOK OF PAIN ON HER FACE. SHE IS UP WATCHING SPONGE BOB NOW, BUT THEY JUST GAVE HER SOME MORPHINE SO SHE IS NOT FEELING MUCH PAIN NOW.

CAMP SUNSHINE STARTS TOMORROW. I SO HATE THAGT WE ARE NOT THERE. ALICIA LOVES CAMO SUNSHINE. IT IS ONE PLACE SHE CAN RUN AND BE ONERY WITHOUT GETTING IN TROUBLE. SHE IS VERY WELL KNOWN FOR HER HUGE HUGS SHE GIVES TO EVERYONE ALTHOUGH NOW I DO NOT KNOW IF SHE WILL GIVE ANY. SHE HASN'T BEEN IN A HUGGABE MOOD LATELY. I HOPE ALL OF OUR FRIENDS GET THERE SAFE AND HAVE ALOT OF FUN. I CAN NOT WAIT TO SEE ALL OF THE PICTURES.

DAY +49 (LIL UPDATE)

AS I WAS SAYING ALICIA WAS GETTING THE MED TO FINALLY MAKE HER BETTER (HOPEFULLY) AND I ALSO GOT MY MED TO MAKE ME FEEL BETTER. I SEEN ALOT OF FRIENDS THIS WEEK. I KAYLA AND WILL AND DONNA AND JEFF, NICHOLAS AND SPENCER AND JO AND JACY AND CAMERON AND TINA AND KEITH. I ALMOST CRIED WHEN I SEEN DONNA THROUGH THE DOOR. SHE HAS A MCDONALDS BAG WITH CHICKEN NUGGETS IN ONE HAND AND SOME FUDGE HER SISTER HAD MADE IN THE OTHER. IT WAS SO YUMMY, I WOULD SAY THAT I SHARED BUT I WOULD BE LYING. I HAD EERY INTENTION ON SHARING BUT THAT FIRST BITE WAS JUST SOOOOO GOOD.

PLEASE ALSO SAY AN EXTRA PRAYER FOR SAM MCARTHY. TODAY IS HER BIG DAY. SHE WILL BE GETTING HER NEW CELLS AND TOMORROW MY NEW LITTLE FIREND ABBY WILL GET HERS. ABYY'S 11 YEAR OLD BROTHER IS HER DONOR AND HE IS HERE TODAY FOR HIS BONE MARROW COLLECTION SO PLEASE KEEP ALL THREE KIDS IN YOUR PRAYERS.

DAY +49

WE FINALLY HAD A GOOD NIGHT LAST NIGHT. AT LEAST I SLPET THROUGH IT ALL SO IT MUST OF BEEN GOOD!!!!!!!!!!!!!!!!!!

ALICIA HAD HER FEVER YESTERDAY UNTIL LATE IN THE AFTERNOON. SHE FINALLY ENDED UP GETTING RID OF IT AROUND 4PM AND FROM THAT TIME ON SHE HAD A BETTER DAY. SHE ATE A WHOLE BOWL OF RAMEN NOODLES, AND HALF OF A PUDDING AND ONE FRENCH TOAST STICK. I WAS SO HAPPY. SHE HAD NOT ATE THAT MUCH IN A WHOLE MONTH IT SEEMED LIKE.

FINALLY FINALLY FINALLY THEY FOUND OUT WHAT IS WRONG WITH HER. AFTER FOURTEEN MILLION TESTS THE ONE THAT CAME BACK POSITIVE WAS FOR THE ROTAVIRUS, ( STOMACH FLU ). SHE MUST OF HAD THIS FOR AT LEAST A COUPLE WEEKS NOW. THE DOCTOR SAID WITH THE COMPRIMISED IMMUNE SYSTEM SHE HAS AND NO ANTIBODIES TO FIGHT IT THAT IT WAS JUST GETTING WORSE. THAT MAKES SO MUCH SINCE AS TO WHY HER TUMMY KEPT HURTING MORE AND MORE AND HER POOP WAS NOTHING BUT WATER FOR SO LONG. IT WAS LIKE HER TUMMY WAS GETTING A DOUBLE WAMMY. SO SHE GOT AN EXTRA DOSE OF IVIG WHICH SHE HAS BEEN GETING EVERY OTHER WEEK AND IT HAS THE ANTIBODIES IN IT TO FIGHT THE ROTAVIRUS BUT WITH HER VERY FREQUENT AND VERY WATERY STOOLS SHE WAS NOT GETTING AS MUCH AS SHE WAS GETTING RID OF. AND THE NIGHT BEFORE SHE GOT THE EXTRA DOSE OF THE MED THAT FIGHTS THE GVHD SO HOPEFULLY THIS WILL HELP KICK IN AND MAKE HER BETTER. 9 THIS MORNING I COULD ACTUALLY SEE WHAT SHE ATE LAST NIGHT IN HER STOOL ) I KNOW THAT IS YUCKY BUT IT MADE ME EXCITED. ( HOW FUNNY THAT I GET EXCITED ABOUT POOP )

SHE NEVER WAS ABLE TO TAKE THAT GIANT PILL THEY WANTED HER TO TAKE, AND I BELIEVE YOUR HUSBAND WAS RIGHT TERESA ABOUT HOW IT WAS A TIME RELEASE CAPSULE. IT WAS GOING TO COAT THE LINING OF HER INTESTANTS TO HELP WITH THE GVHD JUST AS THE CREAM DOES WITH A GVH RASH.

TODAY FEELS LIKE IT IS GOING TO BE A GOOD DAY!!!!!!!!!!!! MAYBE BECAUSE I GOT SOME MUCH NEEDED REST. ALICIA REALLY LIKE THE NURSE WE HAD LAST NIGHT WHICH MADE IT ALOT EASIER. SHE HAS A FEW THAT SHE FAVORS AND EVEN SMILES AT.

16 DAYS UNTIL MOMMY AND DADDY COME. I AM SOOOOOOO HAPPY ABOUT THAT. ALICIA IS EXCITED ABOUT SEEING HER DADDY. AND I KNOW HE IS EXCITED TO SEE HER. HOPEFULLY WE KEEP GOING UP HILL AND WE WILL BE OUT OF THE HOSPITAL BY THEN.

I HOPE EVERYONE HAS FUN AT CAMP SUNSHINE. I HATE SOOOOOOOOOOOOOO MUCH THAT WE WILL NOT BE THERE. IT STARTS FRIDAY IT IS A CAMP THAT FA FAMILILES GET TOGETHER ONCE A YEAR AND THE KIDS HAVE ALOT OF FUN AND THE PARENTS GET ALOT OF EDUCATION AND THE FUTURE OF FA. AND I SEE LOTS OF FRIENDS AND AM ABLE TO VENT WHERE EVERYONE UNDERSTANDS EACH OTHER. I HOPE EVERYONE HAS FUN AND I CAN NOT WAIT TO HEAR ABOUT IT ALL AND THE FUN THE KIDS HAD.

THANKS AGAIN FOR ALL THE PRAYERS BEING SAID FOR ALICIA. THEY ARE BEING HEARD. IF IT GOES THIS WAY THEN MAYBE WE WILL BE HOME BY CHRISTMAS.

DAY +48

I THINK I MIGHT HAVE GOT THE DAYS MESSED UP SOMEHOW. I COULDN'T FIGURE OUT IF IT WAS 47 OR 48 THINK I WILL JUST START WITH DAY FORTY ??? AND THEN FIFTY ???

I AM VERY VERY VERY TIRED. I FEEL THAT TODAY MIGHT BE THE DAY WHERE I MAKE MYSELF BE HEARD. ALICIA HAS ANOTHER FEVER RIGHT NOW, AND IS POOPING ALL OVER EVERYTHING. I MEAN IT IS JUST LIKE A RIVER AND IT HAS BEEN FOR OVER THREE WEEKS. IT SEEMS TO ME LIKE THEY ARE NOT TRYING ANYTHING DIFFERENT, THEY ARE JUST WAITING TO SEE IF WHAT THEY ARE DOING STARTS TO WORK. AT LEAST THAT IS HOW I FEEL. ALTHOUGHT YESTERDAY THEY DID TRY TO MAKE HER TAKE A DIFFERENT PILL THAT WAS SO HUGE, A HORSE WOULDN'T EVEN BE ABLE TO TAKE IT AND THEN THEY HAD THE NERVE TO TELL ME I NEEDED TO TRY MY HARDEST TO MAKE HER SWALLOW IT WITHOUT HER BITING IT. YEAH RIGHT!!!!!!!!!!!!!!!!! SHE IS FIVE YEARS OLD!!!!!!!!!!!!!! I TRIED EVERYTHING FROM PUTTING IT IN JELLO TO PUDDING TO BRIBING HER TO THREATENING HER. THAT IS WHEN I DECIDED THIS IS ENOUGH. I AM NOT GOING TO PUT HER THROUGH THIS EVERYDAY. I KNOW THERE HAS TO BE SOME OTHER OPTION OR DIFFERENT MED THAT CAN BE IV OR NG TUBE. WHAT IF ALICIA WAS 3 YRS OLD, WOULD THEY EXPECT HER TO SWALLOW A CAPSULE WITHOUT BITING IT???????????

I DO KNOW IT IS TIME TO AT LEAST SEE A LITTLE IMPROVEMENT. I FEEL WE ARE BACK TO DAY ONE WITH THE FEVER AND DIAREHA.

MAYBE I JUST NEED SOME REST. THE NIGHT BEFORE LAST ALICIA HAD A HORRIBLE NIGHT WITH FEVERS AND LAST NIGHT WAS EVEN WORSE. THEY STARTED A MED AT 12:25 AM THAT HER VITALS HAD TO BE CHECKED EVERY 15 MINUTES. AND THE MED TOOK 4 HOURS. I WAS SOOOOOOOOO MAD BUT I BIT MY TOUNGE BECAUSE I KNEW MY BABY NEEDED IT. SO NEEDLESS TO SAY WE HAVE NOT BEEN TO SLEEP IN TWO DAYS AND NOW SHE HAS ANOTHER FEVER.

PLEASE JUST KEEP ALICIA IN YOUR PRAYERS. I JUST WANT HER TO GET BETTER!!!!!!!!!!!!!!!!!!!!!!!!!

DAY +47

MOMMY IS GONE!!!!!!!!!!!!!!!!! I SO HATED TO SEE ERIKA LEAVE. WE HAD SUCH A NICE WEEKEND. ONLY 18 DAYS LEFT UNTIL HER AND DADDY WILL BE BACK!!!!!!!!!!!

THE GOOD BYES WENT VERY WELL., ALTHOUGH I BELIEVE ALICIA DID NOT KNOW THEY WERE FOR REAL GOOD BYES. SHE TOLD HER MOMMY GOOD BYE AND GAVE HER KISSES AND HUGS, AND I WAS LIKE WOW THIS IS EASY. THEN I WALKED ERIKA ACROSS THE STREET TO MEET THE HOSPITAL SHUTTLE THAT WAS TAKING HER TO THE AIRPORT. WHEN I GOT BACK TO ALICIA SHE GAVE ME THIS STRANGE LOOK AND ASKED "WHERE IS MY MOMMY?" AND WHEN I TOLD HER SHE HAD TO GO BYE BYE AND FLY SHE BROKE OUT BAWLING. I FELT SO BAD BECAUSE SHE DID NOT UNDERSTAND THAT WHEN SHE WAS SAYING GOOD BYE.

WELL OF COURSE ALICIA HAD TO WAIT FOR ERIKA TO LEAVE TO GET A FEVER. SHE WAS FLIRTING WITH A FEVER ALL WEEK END BUT ABOUT ONE THIRTY THIS MOIRNING SHE GOT THE FULL BLOWN FEVER. TYLENOL DID NOT WORK SO I KEPT COLD RAGS ON HER HEAD LIKE MY MOM USED TO DO ME AND FINALLY BROKE THE FEVER AROUND SEVEN THIS MORNING. ALICIA IS ALSO COMPLAINING ALOT MORE ABOUT HER STOMACH HURTING. HER STOOLS ARE WORSE NOW THAN WHEN SHE FIRST GOT THE GVH. THIS IS REALLY STARTING TO GET FRUSTRATING!!!!!! IT IS LIKE WE TAKE TWO STEPS FORWARD AND THREE STEPS. IT SEEWMS LIKE WE HAVE NOT MOVED FORWARD IN ALMOST A MONTH. I KEEP GETTIGN TOLD THAT GVH IS A SLOW PROCESS AND I UNDERSTAND THAT BUT I THINK WE SHOULD SEE A LITTLE IMPROVEMENT BY NOW. WE ARE THREE DAYS UNTIL OUR HALF WAY MARK TO THE MAGIC 100 DAYS. I JUST WISH I KNEW WHAT IS GOING ON WITH MY BABY.

I FOUND OUT THAT DENISE IS BRING MY OLDEST SISTER KELLI UP HERE ON LABOR DAY WEEKEND. I AM SOOOOOOOOOOOOOO GLAD. ALICIA HAS BEEN ASKING ALOT LATELY TO SEE KELLI SO I KNOW THAT WILL MAKE HER VERY HAPPY. AND ALICIA IS ALWAYS HAPPY TO SEE NE-NE. ALICIA AND DENISE HAVE SUCH A SPECIAL BOND. I HAVE FOUND OUT THROUGH THIS THAT MY SISTER DENISE IS TRUELY MY BEST FRIEND. AND I CN NOT WAIT TO SEE MY OLDEST SISTER. I MISS KELLI SO MUCH. NOW ALL I HAVE TO DO IS WORK ON MY MOM AND MY LITTLE SISTER AND IT WILL BE EVEN BETTER.

WELL I AM VERY VERY TIRED AND ALICIA IS ASLEEP SO I AM GOING TO TRY TO REST ALSO. I WILL UPDATE IF I FIND OUT WHAT IS GOING ON. THERE IS ONE MORE THING THAT IS ALSO WORRYING ME AND THAT IS HER CBC THIS MORNING THEY DREW MORE BLOOD TO REPEAT IT BECAUSE IT HAS TO BE WRONG HERE IT WHAT IT IS AND WHAT IT WAS YESTERDAY................

WBC--TODAY--2.9 -- YEST--5.5

HGB--TODAY--13.5--YEST--8.7

PLAT--TODAY--34--YEST--66

ANC--TODAY--2.67--YESY--5.06

THOSE ARE SUCH BIG CHANGES SO I THINK THEY HAVE TO BE WRONG. AT LEAST I SURE HOPE SO. I WILL FIND OUT A LITTLE LATER.

THANKS FOR ALL OF THE PRAYERS. WE NEED ALOT NOW.....

DAY +45

MOMMY IS HERE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

SORRY I DID NOT UPDATE YESTERDAY, IT WAS SUCH AN EXCITING DAY. ALICIA WAS SO HAPPY TO SEE HER MOMMY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! SHE WAS ASLEEP WHEN ERIKA AND I WALKED IN AND ERIKA TURNED ON THE LIGHT AND YOU SHOULD OF SEEN THE SMILE ON BOTH OF THEIR FACES. IT IS A MOMENT THAT WILL BE IN MY MIND FOR A VERY VERY LONG TIME.

ALICIA HAD A VERY GOOD NIGHT. SHE EVEN ACTUALLY GOT OUT OF BED AND WALKED. SHE WANTED TO SHOW MOMMY HOW SHE COULD TAKE HER MEDICINE. AND SHE WANTED MOMMY TO PLAY AND COLOR AND WATCH A MOVIE. THE FIRST WORDS SHE SAID TO HER MOMMY WAS "I GO BYE BYE WITH YOU" I THOUGHT O MY HOW ARE WE GOING TO OVERCOME THAT ONE, BUT ERIKA JUST TOLD HER THAT SHE NEEDED TO GET BETTER FIRST AND SHE WOULD TAKE HER WHERE EVER SHE WANTED JUST AS SOON AS SHE IS ALL BETTER. ALICIA SAID OK TO THAT. BUT WHAT WE NEED TO OVERCOME IS THE SAYING GOOD BYE PART TOMORROW. ERIKA HAS ALREADY DECIDED THAT WHEN SHE LEAVES SHE IS TELLING HER THAT SHE WILL BE BACK VERY SOON THAT SHE NEEDS TO GO GET DADDY AND BRING HIM BACK. ALICIA HAS SAID OK TO THAT ALSO BUT TOMOROW WILL BE THE TEST.

ALICIA HAD A NOSE BLEED LAST NIGHT. IT ONLY LASTED ABOUT FIVE MINUTES AND THEY GAVE HER PLATELTS SOON AFTER. SHE EVEN ATE MORE THAN EVER LAST NIGHT, ERIKA FED HER SO ALICIA TOOK ALOT OF BITES.

IT FELT SO GOOD TO GET A GOOD NIGHTS SLEEP. I AM GOING TO GO TO THE RONALD MCDONALD HOUSE AGAIN TONIGHT TO SLEEP. IT WILL BE ANOTHER THREE WEEKS TIL I WILL GET TO AGIAN UNLESS WE GET OUT OF HERE FIRST. ERIKA AND ANSHON ARE COMING BACK ON THE 22ND. ALICIA IS SO HAPPY HER DADDY IS COMING THAT TIME. ANSHON LOVES ALICIA ALOT AND HE IS VERY GOOD WITH HER. SHE MISSES HER BROTHERS THOUGH ( AND SO DO I MORE THAN EVER!!!) ERIKA BROUGHT THE CAMCORDER WITH ALOT OF VIDEO'S WITH THE BOYS AND ANSHON AND SHE LOVED WATCHING THEM.

TINA AND KEITH AND THE KIDS ARE COMING TO GET ME IN A COUPLE OF HOURS TO TAKE ME TO DINNER. YES!!!!!!!!!!!!!!!!!!!!!!!!! NO HOSPITAL FOOD!!!!!!!!!!!!!!!! I LOVE TINA SO MUCH. SHE IS SUCH A VERY VERY GOOD FRIEND. I THINK WE ARE GOING TO EAT MEXICAN. YUMMY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WISH US LUCK FOR TOMORROW. I PRAY IT ALL GOES WELL AND THE GOOD BYES ARE NOT THAT HARD.

HERE IS ALICIA OUT OF BED FOR THE FIRST TIME IN A LING WHILE WITH MOMMY..........

THIS ONE IS FUZZY CAUSE SHE IS WALKING!!!!!!!!!!!!!!!!!!!!!!!!!!!

HERE IS MOMMY FEEDING ALICIA.........................