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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.



Sunday, September 21, 2008

Day +94

Yesterday was PERFECT!!!!!!!!!!!!!!!!!!!!! Alicia was sooooooo happy to see Mommy and Daddy. There was not one flaw yesterday, We treasured every second we had and it was awesome.

Alicia had no fevers or issue's and she even ate a little for Mommy, She was showing Mommy and Daddy how much of a big girl she was. It sucked really bad that they could only stay for a short time but it could not of been more perfect.

They arrived around 8pm ( with time change ) and Alicia had a HUGE smile on her face when they walked in. The two hours before they got her Alicia kept saying "you find mommy and daddy" it was so cute. They spent a couple of hours here until Alicia got tired and then we layed her down and we went to Walmart to stock Alicia up with some winter clothes. I did not plan on being here trough the winter so I only brought a few warm clothes for her so Erika made sure she was had plenty and a winter coat as well.

Saturday morning we went to breakfast and came back to the Hospital before Alicia woke up. It was so nice to see Erika wake up Alicia and to hear the two of them made me cry. Yes there were many wet eyes Saturday ( even daddy ). The three of them played so much and I just sat back and enjoyed every second. Erika even handle seeing Alicia's skin the way it is ( and it is still looking pretty horrible.) I think that is what worried me the most. Dr Joedel came in and explained what was going on with Alicia's skin and what they were doing to fix it and let Erika ask any questions she had. Erika felt way better after the talk with the Doctor. Here are a few pictures of when we got to the hospital after breakfast Saturday.


As you can tell they just woke her up and she was still yawning. The pillow is what a lady made at the hospital here. She wanted her Mommy to have it.


This one Erika was trying to give her some of her hair for the picture.

Alicia also got a private time in a playroom on the 7 th floor. They shut down a playroom and sterilized everything and Alicia got 2 hours of private time. We had so much fun. It was so funny watching Erika push the pole and Anshon push Alicia. Erika kept running into everything, even me, we laughed so hard. When we got in the room the first thing Alicia chose to play with was a doctor kit. ( of course ) and since Theo was not with us Mommy and Daddy got to be the patients. We even tried doll houses and little figurines but No Alicia wanted to play Doctor, GO FIGURE!!!!!
Her is a picture when Erika was the patient.

Finally we found something that would take her away fron the doctor toys and it was the play kitchen area. I had left the room for a little while but when I got back they told me how much fun they had. Alicia and Daddy made Pizza.................

This is of all five of us, ( me Mommy Daddy Alicia and Obama. )

Well Alicia did not make it the full two hours. She started to get a tummy ache and wanted to go back to her room.

When we finally got Alicia settled back down and Mommy and Daddy and her were playing I decided it was time to get some ME time. I went to the RMH for a nap but I couldn't sleep so I decided to take a bubble bath and just soak in the tub and I even got to shave my legs!!!!!!!!!!!!!!! ( the smallest things excite me now!!!!!!! ) usually i have to take a shower in the parent bathroom and I am always rushing so I can get back to Alicia or my friend Kelly is waiting ( lol I really do try to hurry Kelly ) so the Bath thing yesterday felt AWESOME. Erika called a few hours later and said Alicia was very tired ad wanted to shut off the lights so we went to dinner at that time.

I had the BEST dinner I think I have ever had. We went to Longhorn Steak House, ( thanks Dianne) The steak melted in my mouth. It was the best food I have ever had in Cincinnati. Erika has something called Crab Bake with her steak and it was soooooooooo good. She even licked the bowl. We had such a good time, we laughed the whole time ( maybe that was because of the Margarita's )

After dinner we went back to the hospital and they woke Alicia up and spent another hour with her and then decided to go back to the RMH and sleep for a while before they got on the road. It was almost Midnight before they left so I was so glad they did not try to drive through the night.

Around 6 am this morning i woke up to change and check on Alicia and a nurse told me her Mommy and Daddy had just sneaked in and gave her a kiss good bye. They did not even wake me, I didn't know if I should of been mad or not but after talking to Erika she said I was snoring and she said there was no way she was going to wake me up because I needed my sleep so I was thankful not mad.

And that was our day yesterday. It was PERFECT!!!!!!!!!!!!!! They are coming back up the weekend before Alicia's Birthday but this time they are bringing the boys and they are staying for five days. I can not wait. I wish they could come sooner but they have to save for the plane tickets. Yes they are flying hopefully.

Alicia is having a good day today also. She has already ate a little and is giving theo his meds right now.

Please keep Abby in your prayers today. Her mom is my very good friend Reid. I am sure I have told everyone about her, Abby was admitted a couple of days ago for a fever but today she has a temp as high as 105. Her web site is carepages visit Abbypatterson.

5 comments:

Anonymous said...

I"M so happy to see mommy and daddy there with alicia..send my love to them, and i need you to email those pictures please..i love ya all and miss ya

Anonymous said...

Thanks for sharing the great family pictures. It is wonderful to see all of you enjoying your time together. It was great to hear about this PERFECT weekend!! :) Love, Dianne

PattersonFamily said...

Alicia, Abby and I love you so much and we are praying that you and your Memaw are out of this place as soon as you are feeling good! I love reading your updates and looking at the pictures of you and your family. You have the best family ever! I can't wait until you and Abby are able to play and run around and have fun! We love you! Reid and Abby

Lynn said...

Glad things went so well!
Lifting up prayers!
Romans 8:34 Who is he that condemneth? It is Christ that died, yea rather, that is risen again, who is even at the right hand of God, who also maketh intercession for us.
Prayer Bears

Charisse said...

Wonderful! I am so glad things went well and Alicia got to be with her mummy and daddy! It will be great when they come back with the boys!
I am also glad that you had a GREAT bubble bath. It is a nice way to relax.
Yep, I am back from Australia FA camp and it was GREAT!
Love Charisse