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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, March 9, 2009

Day +263

Alicia did well with having her port removed this morning. She is a little upset though because they put the IV in her foot and she does not like anyone messing with her feet. The next two days are going to be long ones. She is scheduled to have a picc put in on Wednesday at 2. So I guess that this would mean that we will not be on that flight at 11 am. Here is a pic of Alicia just after she was waking up this morning in the PACU.........................
I am just soooooooo frustrated about this whole situation. The waiting and not knowing is the worse!!!!!!!!!!!!! Now I do not have a clue as to when we are going home. Hopefully Dr Davies will come and speak to me today. And to make the matters even worse, yesterday when I was leaving to go across the street to eat dinner I stopped to double check that the nurse server was lock and I could not believe it.... it was unlocked again. I was livid. I went to the nurse and told her to come and lock it and I let the charge nurse know how upset I was. I told her when will it be enough after a child kills their self........................................... I was smart though, just before I went to gt the nurse I took a picture so I could e-mail it to Dr Davies..............

Luckily I checked or who knows what Alicia would of gotten into this time!!!!!!!!!!!!!!!!!1



Before I end this I want to take a little time and Thank my mom for all she has done for me. I stressed yesterday how Denise has went over and beyond for us but my mom has also. She is the one who took the time to find us the apartment, she has done so much with it also. She has been there every day doing more and more. Thank you so much mom I love you!!!!!!!!!!

6 comments:

Anonymous said...

That is so scary and frustrating! You were smart though to check it and even take a picture. They can't deny it now! I know they are busy but Alicia is just too young to understand to stay away from it. I am still in shock that little smartie flushed her line with Sprite! Too smart for her own good. Hang in there, you are in the home stretch. You have come so far and I know you are so tired and yearning for normalcy. It will come, never soon enough, but I bet if you look back you cannot believe it's been 263 days. My mother in law is in the hospital right now and she was getting antsy over staying two weeks. I told her Alicia has been in for 250 days! She just needs to settle down and be happy it's only 14! She agreed ;0)

Anonymous said...

Praying that Alicia is on the mend ASAP, you can go home soon. Love, Dianne

Charisse said...

HOw frustrating. I am glad you took a picture and went to the nurse about it. Well let me know what about in regards to all this. I am interested to hear how they deal with it. You were smart to take a photo *sigh* How frustrating. Sounds like you are honestly about to burst. You need to be home. I am so sorry this is taking so long!
Love ya,
Charisse

Anonymous said...

Just stopping by to see if there were any updates. Sweet dreams...Dianne

Anonymous said...

I can't believe it! How could they leave it unlocked AGAIN?!!!!!!!!!
I always come back to these verses. It never ceases to amaze me that the Holy Ghost Himself prays for us! He's praying for you! There's no greater comfort than that!
Romans 8:26-27 Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God.
Prayer Bears
My email address

Anonymous said...

Hope everything's okay there today and totally uneventful!
Continuing to pray!
2 Timothy 1:8-10 Be not thou therefore ashamed of the testimony of our Lord, nor of me his prisoner: but be thou partaker of the afflictions of the gospel according to the power of God; Who hath saved us, and called us with an holy calling, not according to our works, but according to his own purpose and grace, which was given us in Christ Jesus before the world began, But is now made manifest by the appearing of our Saviour Jesus Christ, who hath abolished death, and hath brought life and immortality to light through the gospel:
Prayer Bears
My email address