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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, December 29, 2008

Day +193

OK where should I start. First I should let everyone know that we are once again inpatient. Alicia was admitted this afternoon after her Day Hospital visit. I was already expecting it so I am not totally freaking out. We are in A5south room 547.


Christmas was WONDERFUL!!!!!!!!!!!!!!!!!!!!!!!!!!! Alicia had the best Christmas ever. It started when we landed in Wichita Monday an a lot of my family and friends where there jumping up and down and clapping for Alicia. She was smiling from ear to ear. My dad was also at the Airport, who I was soooooo very happy to see. He has not been in good health for a while but he looked so great to me. Denise was there and so was my very good friend Tracy and her children. The best of all was Erika surprised the both of us also. I was sooooo happy to see everyone. It felt so good.


We went from the Airport to Denise's and that is where Alicia stayed while Denise, Kelli, my oldest sister and I went shopping. I got all of my grand kids Christmas gifts before my brother in law called to tell me Alicia was throwing up.


We decided to stay at Erika's instead of a Hotel so Alicia and her Mommy could spend a lot of time together and I could save money. The first night we were there Alicia practically threw up all night. The next day (which was my Birthday Alicia had a pretty good day but into the evening and all through the next day Alicia threw up most of her feeds and meds and started running a low grade fever. I talked to the Doc on call here in Cincinnati and they pretty much told me that if she did not have a fever than to just watch her. Her cough was still getting worse and so was her pooping. But her spirits and attitude was AWESOME. She ate up all of the time she could with Mommy and Daddy and Ne Ne, and Lil Anshon was so glad his sister was there. She loved to show Mommy how to give her medicine to her and she even checked Ne Ne's blood sugar a couple of times. She got so many gifts and she loved each and everyone of them. But the whole time I was watching her very close and I knew what was happening.


Alicia was not eating anything. And what she would eat, or I was giving her through her tube she was throwing up. I kept in contact with the Docs up here and they were still OK as long as there was no fever which there wasn't. Saturday was the day I decided to take her in to be check out. Erika took her pull up off of her which we have been having to keep one on due to the runny stools. But this one had traces of blood in it.


We took her to our local ER which is another horror story all by its self. They did a chest x-ray, Cbc, and another nasal swab, and decided she was OK to fly back to Cincinnati the next morning.


This morning she still had not ate anything, which will make it seven days without any food. The plan is to start her back on Tpn to get nutrition inside of her while they get her to start being able to tolerate her feeds and put her weight back on. I am not for sure how long we will be here, hopefully Alicia will start eating soon.


I have pictures from Christmas and I promise to post them as soon as I get them downloaded. Thank you to Everyone for making Alicia's Christmas special!!!!!!!!!!!!!!!!!!!!!!!

4 comments:

Anonymous said...

Glad you had a wonderful Christmas but sorry you're back in the hospital!
Know that you're always in my thoughts and prayers!
Isaiah 41:10 Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.
Prayer Bears
My email address

Anonymous said...

I am so glad to hear that you had a special Christmas. Praying that Alicia is on the mend soon. Dianne

Anonymous said...

hi sis no words can explain how happy i am yall made it home for christmas. i miss you and alicia so much it sucks. tell her ne ne loves her a whole bunch. i hope i can afford to come see yall soon. ill talkto you soon NeNe

Charisse said...

I am SO glad you had a good Christmas. I am so sorry that Alicia was sick for almost the entire time! What a shame...but I am glad you still got to be there! I pray that She feels better and starts eating real soon!
Love Charisse