Alicia had her hearing test done on Thursday and her hearing has gotten worse. She has 75% loss. Alicia did so well during the tests!!!!!!!!!!!! Then a lady came in to talk to me about a Baha hearing aid. Alicia took another test with one on and her hearing went to 15% loss. I was sitting behind her where she could not see me so I whispered her name. i mean i really whispered and I about fell over when Alicia turned around and looked at me and said what....... SHE HAS TO HAVE ONE!!!!!!!!!!!!!!!!!!!!!!!!!!! They are working now with the insurance to see if Alicia can get one. it was awesome!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


Alicia also had an EKG/ECHO done on her heart and a scan done on her bones to check the density of them for any damage done by the chemo. Thursday they will do the Biopsy and also clean her ears to see if they can get a little of her hearing back. I am hoping to be home by her Year "Special day". Her Electra lites are still out of whack and Dr Davies still has to talk to her Pediatrician for a follow up plan back home so keep your fingers crossed!!!!

I will update more when the results start coming in.

Good News!!!!!!!!!!!!!!!!!!

We had an appointment today with Dr Davies which we had another x-ray prior to and she said it looks a lot better!!!!!!!!!!!!!!!! Alicia still has loose stools but they have slowed way down. She should only be on the antibiotics for a couple of more days for the bacteria and it should be all uphill from here.


Dr Davies said she still wants us to stay in Cincinnati for a while to watch her after the antibiotics are done and we are still planning her year work up for the end of next week. The big issue is the follow up care from home. Dr Davies said that we have to come up with a different plan before we can go home. Alicia's Pediatrician is an option and Dr Davies is calling her this week.


I will update more when I have any news. Thank you for the prayers once again, God defiantly heard them all.

RMH

Alicia is doing a lot better. They started her NG feeds yesterday which she tolerated very well. The plan now is to let us go to the RMH, but to stay around Cincinnati for a while, which I am OK with. The closer to Dr Davies, the better.

The Nurses and Doc's have all been so great. I am so very glad we got Alicia here, who knows what would of been the outcome if we were still in Kansas. The Doc' in Kansas were great also but by any means the care for a child that has had a Transplant is the BEST in where the Doc's know about FA!!!!!!!!!!!!


Dr Davies already has an appointment set up with Alicia for Tuesday which she is going to have another x-ray done on her stomach to see if is better. Alicia still has her year post transplant workup which was scheduled before all of this came up. Dr Davies also wants Audiology to see her while we are here also.


I am not sure if the room we are in at the Rmh has Internet access, if not my friend across the hall does so I will update more soon. Thanks for all of your support.

P.S.
Stacy was laid to rest yesterday at 2pm. I talked to his mom and she said it was very beautiful.

FOOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

YEAH FOOD!!!!!!!!!!!!!!!!!!!!!!!!! THE SIX CENTS WORKED!!!!!!!!!!!!!!!!!!!!! Of course when the spaghetti got here it was not want she wanted. She wanted squares (Ravioli's) instead but SHE GOT TO EAT!!!!!!!!!!!!!!!!!!!!!!! She seems to be feeling a lot better, they plan is to keep her on the antibiotics until the 27th and see how she is doing then. The stools are still very runny but they have slowed down which is good. She hopefully will be taken off of the Tpn's tomorrow as long as she keeps eating.

She is having big time Theo withdraws. Every time we walk in the hospital here in Cincinnati she asks for Theo. Well this time he has been in Boston with a child life specialist. I heard he came back yesterday and is planning to surprise Alicia. Since Monday they have been writing letters back and forth. Meagan with Child life put a mail box on Alicia's door and every morning there has been a letter from Theo and then Alicia writes one back to Theo. This mornings letter asked if she wanted to play today?????

I plan on talking to Michelle a little later today so in my next update I will let everyone know how she is doing. Please remember all of the children going through Transplant and each and everyone of our FA children as well.

A Sorrow but Sweet day........................

Yesterday was a very hard day for the FAmily. The loss of such a young and precious boy that was very very close to me. Stacy passed away and went to be with Jesus at 7:30pm last night. He breathed on his own for 30 minutes and The Angels took him from Michelle's arms . I talked to Michelle late last night and she was still with him til around one this morning just rocking him. She said the funeral home was coming for him last night so they are already gone. Please keep them in your prayers. The funeral home is called Barbourville Affordable Funeral Home...

Barbourville Funeral Home

410 Ky 3439

Barbourville Ky 40906

Michelle and Marks address if anyone wants to send a card is..................

Mark and Michelle Honeycutt

PO box 353

Girdler Ky 40943

There also is a web site that Krisstina started a virtual candle light ing in his honor. If you would like to light a candle please go to www.gratefulness.org and search under group named fanco. I would also like to remind everyone if possible please make a donation to the Fanconi Anemia Research Fund... with out the means of donations then a cure for this awful disease is not possible. Every cent donated is one step closer to funding research to find a cure to save these beautiful children's lifes!!!!!!!!!!!!! Please send donations to....

Fanconi Anemia Research Fund

1801 Willamette st Ste 200

Eugene Or 97401

You can send the donation in honor of Alicia's Reed if you would like.

Alicia is doing a little better. Yesterday they allowed her clear liquids only which made her a little happier, but today I believe she is paying for it. Her tummy is hurting and the stools have started up again. She had a total of three Popsicles, one jello, and a half of a cup of chicken broth. Today she will get only half of that if even that. Last night Alicia gave me 6 cents and asked me if I would please give it to the Doctors in the morning so she could have some Spaghetti. It was soooo funny. She was sooo serious also....They did another x-ray yesterday and the good news it did show a slight improvement from two days prior so hopefully we are moving in the right direction.

Today my grandson Jayshon turned 1 year old. I am so sad that I am not there to be with him!!!!!!! This time last year He was born and I had the same feeling I was letting him down as I do today. I h ave missed so much of both of my Grandsons lifes. I made a promise that after I see their sister through this that I will make it all up to him.

HAPPY BIRTHDAY JAYSHON!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Mee Ma misses you soooooooooooooooooo much!!!!!!!!!!!!!!!!!!!!!!!!!

R.I.P Stacy

I am at a loss of words. Today FA is taking the life of someone I am very close to. Stacy Hunningcutt will be placed in Jesus's arms at 7pm tonight. His Mom and Dad made the decision this morning that he has suffered enough. Please say an extra prayer for them this evening at 7pm.

Stacy baby Mee-ma is going to miss you so much. I am going to miss those big hugs you gave me and I am going to miss watching you run over everyone at the RMH on your tractor. I am so blessed that I got to know you and you are so special. Fly High baby!!!!!!!! Where you are going there is no more FA, no more pain, no more needles, no more medicine, only happy days from now on. I love you Stacy R.I.P

Mee-ma

Day ???????????? DO NOT KNOW

Alicia is resting so I have the opportunity to update. Any and every second she is awake we are arguing about food. I am so scared she might start eating my arm or something. She is begging everyone that walks in the room to Please give her one bite. It hurts so bad to tell her she can't. I even thought of sneaking her a spoon full of broth but the first time i do i would get caught!!!!!!!! The Nurses here are WONDERFUL and Megan who has been with us the last couple of days is really stressing to the Doc's how Alicia is having a very hard time with this. The bad thing is Alicia didn't eat three days prior to this happening (by her choice) so we are actually going on a week without food. I am trying everything to side track her and keep her mind occupied and busy but it is not working. Even Sponge Bob is not helping me!!!!!!!!!!!!!!!!!!!!!!!!

The did start her IV (TPN and Lipids) nutrition yesterday which makes me feel better knowing she is getting the protein and calories and nutrition she needs.


They also started another Anti Biotic yesterday for the Bacteria in her stool, and this one is oral. I flush it with sterile water so I am trying to use a little extra to calm her stomach for the few minutes it will. The Doc's have not rounded yet so hopefully we will have some good news when they do.


I do not know if I mentioned in my last post that I went and seen Stacy Yesterday. I could not help but just crying when I seen him. He looks sooooo tired. The Docs told her that he was loosing blood flow to his left leg and if it got any worse they would have to amputate and Michelle said that there was no way she would let them start taking off his limbs ( i am bawling lie a baby) I spent every moment I could with his mom yesterday while her husband was gone and I got the feeling she is just about ready to put Stacy in Jesus's arms. She told me that she held his hand yesterday and told him that if he was tired to just show her a sign and she said a tear rolled down his cheek. She said she told him it was Ok and that Mommy and Daddy will be Ok and that he didn't have to keep pushing and hurting and that Jesus would take him to Grandma. I am just so sad for my friend. We cried together and she was begging for the strength to let go. His twin sister is here today but the Hospital will not let her up to see him with all of the tubes hooked up. (which is probably best) I have not talked to her today but as soon as I do I will update again today so you can check later this afternoon for another update. I told Michelle that A very special friend of mine who also has children with Fa posted about Stacy on the group and that many many many people she does not know is praying non stop for her whole Family. Michelle does not have a computer and is not even on the group, She said she didn't even know it was there but she wanted me to Thank everyone so much she said.

UPDATE ON ALICIA AND STACY

I JUST POSTED AN UPDATE ON ALICIA BUT I WANTED TO LET EVERYONE KNOW HOW MY LITTLE BUDDY, STACY IS.

I SEEN MICHELLE ( HIS MOM) YESTERDAY A FEW TIMES AND SHE STILL HAD HOPE BUT WHAT SHE WAS TELLING ME GAVE ME NO HOPE AT ALL. SHE MELTED IN MY ARMS AND CRIED FOR WHAT WAS MINUTES BUT SEEMED SO LONGER. SHE SAID YESTERDAY THAT HE WAS MOVING HIS ARMS AND EYES AND SHE FELT HE WAS GOING TO GET BETTER.

THAT ALL CHANGED THIS MORNING. I JUST HUNG UP THE PHONE WITH HER AND SHE SAID DR DAVIES CAME IN THIS MORNING AND TOLD HER THERE WAS NOTHING MORE THEY COULD DO FOR HIM. SHE SAID DR DAVIES WAS CRYING WHICH TOLD ME IT WAS NOT GOOD. SHE SAID EVERYTHING IS SHUTTING DOWN AND IT WAS ONLY THE MACHINES KEEPING HIM ALIVE BESIDES HIS STRONG LITTLE HEART WHICH WAS STILL BEATING. DR DAVIES SAID THE MOVEMENT IS ONLY HIS NERVES. SHE TOLD MICHELLE THAT THEY COULD ONLY LEAVE HIM HOOKED TO THE MACHINES ONE MORE WEEK BEFORE GANGRENE WOULD TAKE OVER HIS BODY. I SAM AT A LOSS OF WORDS. I HURT SO BAD FOR MY FRIEND AND I WILL MISS MY LITTLE BUDDY SO MUCH. FA IS SOOOOOOO UGLY.

PLEASE LORD LOOK OVER MY FRIENDS AND TAKE CARE OF STACY WHEN HE GETS THERE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WHAT A RIDE!!!!!!!!!!!!!!!!!!!!!!!!!

O MY WHAT A RIDE WE HAVE BEEN ON FOR THIS PAST WEEK!!!!!!!!!!!!!!!!!!!!! FIRST I WANT TO THANK TINA SO VERY VERY MUCH FOR KEEPING EVERYONE UPDATED. TINA YOU ARE SUCH A GREAT FRIEND!!!!!!!!!!!!!!!!!!!! I ALSO WANT TO THANK EVERYONE FOR THE MANY MANY MESSAGES AND PRAYERS. WHEN I FINALLY GOT HERE TO CINCINNATI AND HAD ACCESS TO THE INTERNET UNLIKE WHERE WE WERE, I WAS SO AMAZED BY ALL OF THE SUPPORT AND MESSAGES. THAN YOU EVERYONE SO MUCH. BY MOST THE ULTIMATE THANKS GOES TO GOD FOR LEADING ME TO MAKE THE RIGHT DECISIONS ALL WEEK AND GETTING MY BEST FRIENDS CARE BACK IN DR DAVIES HANDS.

I DO NOT EVEN KNOW WHERE TO BEGIN. ON MOTHERS DAY I GUESS IS WHEN MY EYES WERE WIDE OPEN. ALICIA POOPED 19 TIMES AND THIS IS NO EXAGGERATION. I WOKE UP THE NEXT MORNING AND CALLED CINCINNATI AND THEY ORDERED LABS RIGHT AWAY TO CHECK ALL OF HER ELECTROLYTES. TWO HOURS LATER I GOT A CALL FROM CINCY AND WAS TOLD ALICIA HAD A POTASSIUM COUNT OF 1.8 AND NEEDED TO TAKE HER TO THE HOSPITAL. WE WERE ADMITTED TO ICU AND FOR THE NEXT SIX DAYS SHE RECEIVED BOLUS AFTER BOLUS OF POTASSIUM AND PHOSHORUS AND MAGNESIUM. HER STOOLS WERE STILL VERY BAD SO IT WAS LIKE A CYCLE. GIVE ELECTROLYTES, ALICIA POOP, CHECK LABS, GIVE MORE ELECTROLYTES AND BACK TO THE BEGINNING.

FINALLY ON SATURDAY THEY DECIDED TO REPLACE ALICIA'S NG TUBE SINCE SHE WAS LOOSING WEIGHT AND THEY WANTED TO START SOME TUBE FEEDING. EARLIER IN THE WEEK THEY WERE PUSHING HARD TO PLACE A G TUBE BUT I INSISTED THEY CHECK WITH DR DAVIES, WHICH SHE TOLD THEM NO. AFTER THEY PLACED THE NG THEY DID AN X RAY TO CHECK THE PLACEMENT AND THAT IS WHEN THE WORST PART OF THE NIGHTMARE BEGAN. THE X RAY SHOWED A LOT OF FREE AIR IN HER ABDOMEN SO SHE WAS IMMEDIATELY TAKEN FOR A CAT SCAN WHICH SHOWED A LOT OF AIR IN THE LININGS OF HER COLON WHICH THEY SAID WAS LEAKING OUT INTO HER ABDOMEN. WITHIN 30 MINUTES THEY WERE COMING IN WITH CONSENT FORMS TO OPERATE AND EXPLORE AND POSSIBLY REMOVE PART OF HER COLON. I OF COURSED FREAKED AND SAID O NO YOU MOST DEFIANTLY HAVE TO RUN THIS ONE BY DR DAVIES. I THEN ASKED ABOUT THE PROCEDURE AND SHE SAID ALICIA WOULD BE CUT OPEN "THE OLD FASHION WAY" AND POSSIBLY COME OUT WITH A COLOSTOMY BAG. I LET THEM KNOW I WAS NOT SIGNING ANYTHING UNTIL I WAS SURE THAT DR DAVIES WAS OK WITH THIS. I CALLED ERIKA AND DENISE AND THEY WERE THERE WITHIN MINUTES. ERIKA TOLD THEM THEY WERE CRAZY AND NOT CUTTING ON ALICIA. I HAD TO TELL ERIKA TO SHUT UP TWICE. SHE WAS NOT HAVING IT. WELL DR DAVIES AGREED WITH ERIKA AND TOLD ME THEY WERE SENDING FOR US THE NEXT MORNING. SO I ONLY HAD A FEW HOURS TO PACK WHICH I HAD TO LEAVE SOME OF MY BAGS BEHIND CAUSE I COULD ONLY BRING ONE. NEEDLESS TO SAY IT WAS ALL OF ALICIA'S CLOTHES SO I AM HERE WITH NOTHING FOR MYSELF. THE MED AIR GROUP AND NURSES FROM CINCY ARRIVED AROUND TEN YESTERDAY MORNING AND OFF WE WENT....................................

THIS IS OF ALICIA IN THE AIRPLANE WHICH GOT US FROM KANSAS TO CINCINNATI IN ONE HOUR AND 29 MINUTES.


ANOTHER OF HER ON THE PLANE...........................................................

THIS IS THE PLANE THEY CAME FOR US ON......................................................

BRINGING HER OFF THE PLANE....................................................THIS IS THE AMBULANCE THAT WAS WAITING AT THE AIRPORT.................BEING PUT IN THE AMBULANCE AND ON OUR WAY TO CHILDREN'S HOSPITAL...

I FOR GOT TO MENTION AS ALICIA WAS BEING WHEELED OUT ON THE STRETCHER THE NURSE RAN UP AND HANDED THE CREW A PIECE OF PAPER THE HAD A NAME OF A BACTERIA THAT CAME BACK POSITIVE IN HER STOOL CULTURE WHICH IS LIFE THREATENING IF GETS IN HER BLOOD STREAM.

THE PLAN NOW IS TO START HER ON THREE ANTI BIOTICS WHICH THEY DID LAST NIGHT, THEY ALSO TOOK AN X RAY WHICH CONFIRMED NEMATOSIS (SP??) SO WHAT I WAS TOLD IS WITH TIME OF LETTING HER GUT HEAL WHICH MEANS NO FOOD OR MEDS BY MOUTH AND DAILY X RAYS ALONG WITH THE ANTI BIOTICS SHE SHOULD BE ABLE TO HEAL ON HER OWN. ( NO SURGERY HMMMMM?????)

THE FOOD PART IS THE HARDEST. ALICIA IS LITERALLY STARVING. SHE NOW IS BEGGING FOR JUST ONE BITE. SHE KEEPS ASKING FOR DR DAVIES PHONE NUMBER AND SAYS SHE NEEDS TO HURRY AND FIX HER TUMMY TODAY CAUSE SHE JUST WANTS ONE CHICKEN NUGGET. IT IS SO HORRIBLE TO SIT HER AND WATCH TEARS RUN DOWN HER FACE AS SHE TELLS ME SHE IS HUNGRY. THEY SAID SHE MIGHT NOT GET ANYTHING OT EAT FOR TWO TO THREE WEEKS. PLEASE PRAY THE HUNGER PAINS GO AWAY.

THANK YOU FOR SOOOOO MUCH SUPPORT AND PRAYERS!!!!!!!!!!!!!!!!

Colon infection

Alicia made it here safely. She is doing ok. She has a bacterial infection and obstruction in her colon. The doctor here says Wichita was trying to do the protocol for a normal patient, Which would be immediate surgery, a colostomy. This would not be the normal treatment for a FA patient. She has a life threatening infection. She is in danger and this must be taken care of carefully.

However, she is still acting very wild, just like her normal self. She is mad, because she is hungry and can not eat. (She has threatened the staff she is going to call Dr. Davies! It was very funny!) They have been told for about 3 weeks.

They are still running tests and Michelle or I will update again as soon as we can.
Thanks and keep praying
Krisstina

Going to Cincinnati

Ok, so Alicia is coming back to Cincinnati tomorrow evening. She had an X-ray to check the feeding tube placement and they saw a bunch of air in her stomach. So they did a CT scan and found an obstruction to her bowel. They started her on antibiotics and a bunch of other things. She is doing ok and Dr Davies is watching as carefully as she can from here. They are constantly calling the hospital. She will safely be back in their care soon enough!

There in Wichita they were going to take her to surgery, they told Michelle she would probably come out with a colostomy, she said I am not signing anything until we speak with Dr. Davies. They called her and Dr Davies said no way, she is a no cutting zone. I will let Michelle tell you all more later.

Thanks for checking in.
Krisstina

Good news

*****UPDATE******
Not so good news today!

Alicia is back in ICU, she had her Potassium, Magnesium, and Calcium drop last night. She has been getting them since 3 AM and Michelle is exhausted!
She has had a feeding tube placed back in her nose and she also has had blood in stools, she is in a lot of pain. So we will see what happens next.

Stacy is also not doing well today! They could not switch him to the vent. He still has pneumonia and Mrsa. He is back on blood pressure meds.
Please continue prayers for both!
Krisstina

Not a whole lot happening here, well some, but more waiting than anything.

Michelle just found out that Stacy's brain is no longer bleeding. They are going to take him off life support and place him back on the vent. They are hoping he has no brain damage! They say he will also need a kidney. Please pray for him!

Alica is also doing better. Her numbers are starting to stabilize a bit and her restroom usage is slowing down. Pray her numbers stay up and they can go home next week.

Thank you so much for the prayers and keep them coming!!! They are working!!

Thanks
Krisstina

Stacy, Alicia hospital updates

****UPDATE**** Not a whole lot going on. Basically waiting to see what happens with both Stacy and Alicia. Alicia is still fluxuating, dropping pretty low and getting potassium.
The doctors there are saying she may be there until the middle of next week. Dr. Davies (Cincy)says if one thing goes wrong, dangerously low again, or anything out of sorts she will be transported here to Cincinnati.

Thanks again
Krisstina

To get the entire history if what is happening please ready older posts.

For Stacy, So far not much change. His mother says he looks better and has moved his arm and mouth. So just keep praying! Pray that she is getting comfort from god, no matter what the outcome.
Krisstina

Alicia's numbers had gone up some while she was sleeping. She then woke up and went to the restroom a couple times. They are now speaking about placing a G-tube. Michelle is very nervous about this, especially as all this is going on with Stacy. She is still in Kansas and would whether be here in Cincinnati. Please continue to pray for them!

Krisstina

Another FA child

We would like to ask for prayers for a FA family here in Cincinnati. His name is Stacy, He is five. He was in transplant when Alicia was here, about a month after hers. They were next door neighbors at the Ronald McDonald House for several months. He has been given only hours to live and his parents are having a very hard time, to say the least. He went home about a week after Alicia to Kentucky. While at home, He got a port on Thursday, the site came open and got an infection in his blood (MRSA). He then got pneumonia and was placed on a vent. He was brought back to Cincinnati. It has quickly taken over his body and his body started shutting down. They were told today he has a brain bleed, which they can not find and do not know how long it has been bleeding. His parents Michelle and Mark are holding out all hope and just not ready to let go. They are going to try dialysis the last I heard. Please pray for them!!!
Michelle is having a very hard time with all this.


Update on Alicia - Her potassium and phosphorus dropped again! She is now getting more. All cultures are negative so far. So Michelle is still thinking maybe GVH!

Pray for her to keep the numbers up.
Krisstina

Hospital

Alica is out of ICU for now. Her potassium level is barely above critical. Please pray it stays up!!!
She got magnesium this morning also. She is still using the restroom alot and that may cause her to drop again. Prayers! Prayers! Prayers!
Krisstina

Hopefully there will be more to update soon!

Alicia Hospitalized

******UPDATE******
Alicia is still doing the same. Her potassium will go up a little and then back down. She is still having diarrhea and she vomited tonight. Her magnesium and phosphorus are also very low. Please pray for all these Iv doses of potassium to take hold, as her levels are considered very critical!
Thanks again!
Krisstina



I spoke with Michelle a couple of times today and Alicia is in ICU. She has critically low potassium and they as of a few minutes ago she had been given 8 bolus's and 3 oral doses. It still will not come up. Her magnesium is low and she is getting that also. She is also trying to get another fever. They have said she will be in ICU for a little while. Please pray for her levels to come back up.
I will update as soon as I get more information.
Krisstina updating for Michelle!



This is Krisstina updating for Michelle, as Alicia was admitted to a hospital in Wichita this afternoon. She was admitted for critically low potassium, a very high white blood cell count, and is on the verge of a fever (100.3). She has been started on fluids. I am sure that Michelle will update as soon as she can.
Please say prayers for her!
Thank you for checking in on her.
Krisstina

Day +326

Yesterday was just horrible. Alicia went #2 19 times and this is not exaggerating. Her stools are just like water and it has me very worried. I have called Cincinnati this morning an I am patiently waiting for a call back. Hopefully Dr Davies will know whats going on. I will let everyone know as soon as I find out. I wouldn't even care if we had to go to Cincinnati a little early, I just want to know that she is OK.

Day +325

Ok Ok Sorry!!!!!!!!!!!!!! I have gotten a few e mails that were not to nice so I need to appologize for the lack ofupdates.


Alicia is still without a tube. I am not sure how long though. Dr Davies said she need to maintain her weight or she will be getting another tube, she is not eating well so It ill probably be sooner than later. She looks like she is getting so little to me. She also has dark circles around her eyes which has me worried also.


One good thing is she is taking her meds pretty good without the tube. I have to hold her nose and count to three and she takes them real fast. She is very terrified of the tube so that has a lot of leverage.


We should be going back to Cincinnati in a couple of weeks for a follow up, and actually i am very glad and can not wait for Dr Davies to have a look at Alicia to ease my mind. She has not been seen here except her hospital stay which the Hematologist here never even came to check on her. She is only seen by a Home Nurse and that has me worried.


Thanks for checking on us.

Day +317

O my where to begin??? First let me start by saying I am sorry that I do not update like I used to. It seems like I can never find time now that we are home. I keep telling myself that I need to at least twice a week but time slips past me.


Well we just experienced our first fever at home. I must say that the hospital here was not as bad as I thought it would be. Of course I could not get the internet to wor so that is why I did not let everyone know. It started Wenesday night, just as soon as I gave Alicia her meds and she laid down in the bed she started throwing up. She had not been eating for three days prior to that so I was already on guard. She still has very very loose stools but they have been like that for a while now. It seemed like she was never going to stop. She even threw up her Ng tube also. That really upset her because she totally hates getting them put in. She kept trying to put it back in herself but I assured her it was ok and I finally got her settled edown and back in bed. The next morning on thursday Alicia did not have much energy and didn't want to get out of bed. I was already worried about the 13 meds she takes in the morning and with no tube that meant she would have to do them all by mouth. She actually did very well. She chased each med with juice and it only took her around 30 minutes to do them all. I was so relieved about that but I was still worried about the eating issue and no tube to give her feeds. After about an hour and she still didn't get up I went and checked her temp and sure enough it was 103.1. I contacted Cincinnati and Erika came and got us and took us to the Hospital. We didn't have to wait and the directly admitted her which was good. They started her on Antibiotics and drew blood for cultures which are still not back. She has not had a fever for two days so we got to come home. My fingers are crossed that something doesn't grow and we will hae to go back.


She still is not eating and I keep telling her she is going to have to get a tube if she doesn't. She has pinky promised that she will eat so we came home without a tube.

Thank you so much for all of your prayers and cross your fingers that this was just a tummy virus.