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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, September 1, 2008

Day +74

THE PASS AND THE VISIT:

The pass was great!!!!!!!!!!!!!!!!!!! Alicia was so excited to go out side. I do not think she actually ealized that we were leaving the Hospital and when we walked out side I could hear her giggling in the stroller. I bent down to see if she was OK because as everyone knows I was a nervous wreck and I asked her what was wrong, my amazing little best friend told me......."I cry, I happy, I OK, I Can see the Sun......." Just like that in those exact words. I about fell to my knee's and thanked the Lord for such a blessing. Nothing could steal my Joy at that moment.

When we got to the RMH we were only there for about 30 minutes when Denise and Kelli and the girls made it here. I was so happy to see my family. My niece's are getting so big. My sister Kelli made it out of the state of Kansas!!!!!!!!!!!!!! I was sooooo happy to see everyone. I was so happy to see Denise, she looked very wore out but I would be too if I drove so far, endured what she thought was a heart attack, lost alot of sleep, on top of her problems which she is h
having surgery for next week. She is the BEST!!!!!!!!!!!!!!

Alicia was soooo excited to see them and they were just as excited to see her. They played games and took turns pushing her in her stroller and took alot of pictures, ( which I have none of and I will explains this later when I get over being mad about it. ) Everyone stayed at the RMH except Denise. Denise went and found the hotel and checked in and went to sleep for the afternoon. Alicia had to be back at the hospital by 6pm, so me kelli and the kids brought her back and hung out in her room with her til NE-Ne woke up and came to the hospital for her sleep over with Alicia and A HUGE break for Mee-Ma.

Denise got back around 7pm and we all went to dinner while Alicia took a nap. She was sooo exhausted. The girls loved being in her hospital room and playing with her. Alicia smiled the whole time. After dinner Denise came back here and stayed with her while Kelli and I and the girls went to the hotel. The girls swam for a while and me and Kelli caught up on all of the missed time.

The next day ( Sunday ) Denise came to the hotel and picked us up and we brought Kelli back to the Hospital so she could spend some time with Alicia, Kortnie her oldest stayed here as well and Denise and I and the two youngest went to Wal-Mart so I could stock up on all that I need for the RMH. Denise then went back to the hospital with Alicia and Kelli and I took the girls to the Zoo for a little while. Around 5pm we decided to take Alicia on another pass to the RMH so they could all spend a little time with her before they left. Denise even took her for a little drive around the parking lot. It has been so long since she has been in a car. Denise even let her steer, that made her very happy.

Then the Good-Byes came. I can honestly say that this has been the hardest good bye so far. I think maybe because I actually seen this one. I got smart with the last one with her Mommy and Daddy and did not see it with my own eyes, but I had no way of getting around this one. Denise had a hard time with it and so did Alicia. I just wish this was all over so we can go home!!!!!!!!!!!

Denise and Kelli and the girls made it home safe around two hours ago. I was soooo very glad to see them.

Our pass today was very good also. Alicia took a bath today in a real tub for the first time in 3 months. She was very unsure of it at first but when she was actually in the water she started to calm down and enjoy it. She ate more than she has in a very very very long time today at the RMH. She played and smiled and she looked very happy. Then after about 2 1/2 hours there she said she was tired and her Tummy was hurting ( her tummy has been hurting a long time now and I am starting to get concerned). I layed her down and she went right to sleep. I thought she had to be very tired due to the Big weekend and all of the excitement. After about an hour I felt her head and sure enough she felt warm so I decided to bring her back. She was so upset. It made me cry to see her cry. She did not want to come back here. She kept sating "No Hospital" but after her tummy was hurting worse she said ok cause she knew she was getting medicine that would help her tummy( that is a shame )

Sure enough when we got back to the hospital she has a temp. It is now at 38.7 which is around 101.2. They are drawing more blood samples and poop samples and giving her meds for her tummy pain. I really think there is something going on inside her tummy. The fever now even convinces me more that there is something not right. So here we go again.

I took alot of pictures this weekend and that is why i was saying I was mad again earlier. But once again retard me did not have the memory card in the camera. LOL Denise took alot also so she is e-mailing them to me tomorrow and i will post some then.

Please continue to pray for Alicia, I will let everyone know how she is doing tomorrow and what Dr Davies decides to do about the tummy and fever issues.

3 comments:

Anonymous said...

wow how exciting that she's been outside, and that the aunts came to see her. she had a wonderful day, and for that i am greatful and hopefully i will be able to come and see her very very soon, give her hugs and kisses from her fav uncle crystal..

Anonymous said...

It is so good to hear about your nieces and sisters coming to see you and Alicia.
It is also good to hear that she was happy to be out of the hospital and that she enjoyed her visit to RMH, playing with her cousins, seeing her aunts, etc.
Am praying that all will be well with her and her tummy (and all of the rest of her too).
Hugs and love to you both.

Anonymous said...

It sounds like you all had a very special weekend. Thanks for the update! Dianne