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.

Tuesday, December 14, 2010

Going Home

We Finally are going HOME!!!!!!!!!!!!!!!!!!!!!!   Alicia is still having the issues with her stools and eating, but Doc Davies said we are homeward bound. We WILL beat Christmas to Kansas!!!!!!!!!!!! our flight leaves in the morning I will let everyone know that we made it home safe.   We have to be back in Cincinnati at the end of January.


Sunday, November 14, 2010

Hurry up and wait..............

Still no answers on what is causing all of this......... Echolia has showed up in her urine but not in cultures yet.... Kansas has not identified what organisms are growing and the cultures here are still neg. What ever it is or was the antibiotics must be doing their job. She is still not eating or drinking and she is sleeping alot. Stools are still pure water, yesterday she didn't make it to the bathroom and pooped on the floor like a puppy. My nails have encountered so much poop in the last 5 days,,,  I don't do well with poop and Alicia thinks it is so funny.

its so hard to believe she will be 8 years old in 4 days. time is going so fast i wish it would slow down so we can be together longer.

mommy and daddy Alicia misses you so much. please kiss my boys for me and tell them every day that mee-ma loves them.


Wednesday, November 10, 2010

quick update

Looks like we will be in Cincinnati but not how it was planned. About 3 am this morning Alicia was taken by ambulance to our hospital here at home. Her fever was at 104.7 and she starting seizing. An air ambulance from cincy is on its way now to transport her. Her bands are at 56% which means she is trying to fight an infection. Her pic line was pushed all the way in to her right side of her heart. That's how infection started. She will have to spend her birthday in the hospital which is a week from tomorrow. I will update more from Cincinnati. Mee-ma

Tuesday, November 2, 2010

Almost "8"

I can not believe that my baby girl is almost "8" years old... there were so many times I doubted that she would make it this far but I proven wrong. God is good!!!!!! I know it has been a long time since I updated, we lost a little boy named Nicholas from FA and I have been kinda depressed. His family is very dear to me.

2 weeks and she will be "8".  We leave for Cincinnati next week to see Doc Davies and I so hope we make it back home before her Birthday. We are set to come back on the 15th and her Birthday is the 18th... so close.

She is doing very good at this point. We are on a roll and have not been admitted in a month. (knock on wood) She is still on every med and has not been weened off any. She is still getting Chemo (Rituximab) every week and fluids every night and High Steroids and Bacterium and Antibiotics and Seizure med and Tacro and Blood pressure med. My kitchen looks like an actual Pharmacy. 

She was so cute on Halloween. She was a little witch. I will post pictures as soon as I get to Cincy and Tina helps me. (love ya girl).


Monday, September 13, 2010

3infections later

The Mri went good and they found access for another picc in her right arm. The MRI also showed a lesion on her 7the right rib but the docs don't seem to worried. They are just goning to keep a close eye on it and do more frequent scans. I am worried though so it definitely wont be put on the back burner.

In the mean time all of her cultures are coming back positve for gram pos rods. They ha vent identified the type of bug it is yet but the 5th 6th 7th 8th and 9th are positive.  Her central line was pulled on the ninth and replaced with the picc  So far all cultures from the picc are negative. I pray they stay that way or the picc comes out also.

Her spirits are pretty good as long as I have spaghetti for her. I am on my third batch. I have to go to the RMH and cook it, she does not like the one on the menu. She also gets pretty mad if any calls her Alicia, she isw now Princess and she will not answer to anything but Princess. That is something my mom started and NeNe and it has went way overboard. O well if thats what makes her happy.

We will probably be inpatient another two weeks and then out patient A couple of weeks also. I JUST WANT TO GO HOME!!!!!!!!!!!

She misses Mommy and Daddy real bad. She talks to them every night from her cell phone. YES she has a cell phone. NeNE gets the worst of it though cause she calls her every morning when she wakes up and they are an hour ahead in Kansas.

So the plan for us is to hurry up and wait. Hopefully no more positive cultures come!!!!!!!