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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, July 27, 2008

Hello,
This is Krisstina updating for Michelle.
Alicia has had a horrible day today.
Michelle said she was fine at 9 AM this morning and around 10:30 she started seizing. They took her to CT immediately. She had about 4 or 5 seizures. She had a seizure while in the CT machine. They had given her Ativan, Ativan is in a group of drugs called benzodiazepines (ben-zoe-dye-AZE-eh-peens). Ativan affects chemicals in the brain that may become unbalanced.
They brought her back to her room. Michelle actually called me while they were working on her during the first or second seizure, her oxygen went down to the mid 70's. I hurried out the door to be with her. At that point we were just waiting to hear what was on the CT. They came in and said she had a spot on her brain, it was a bit fuzzy but they were going to do more testing. They were planning a CT of the rest of her body, an MRI of the brain, a spinal tap, and tons of bloodwork. As they were looking around and checking her out they noticed her right side would not move. She was paralyzed on the right side until about 4 PM. She started moving and talking slowly but surely she was acting more like herself. Her pupils were unresponsive until around this time as well. She still is not the Alicia I know she is slurring a bit and her eyes are rolling back a little. We assume all these medications are the cause. They had given her a large amount of another anti-seizure medication and they said it may make her a bit loopy.

They are doing a CT tonight of the rest of her body to check for other spots of GVHD and a MRI tomorrow to get a more definitive picture of what this spot is.
They have been saying it could be a clot, GVHD, or a couple of other things. Since she has been dealing with the GVHD of the gut they are thinking that is what it is most likely to be.
Her blood gases were a bit off all day, they finally came down tonight, after a high pressure oxygen tube being in her nose. I left there about 1 hour ago and she was doing better, just very mad. She wants to eat and can't since she is getting the scans done. She was changed over to regular oxygen, since her levels came back better. So now it's just waiting. They will move her back to her room if she stays stable. They should know more answers tomorrow.
Thank you so much for checking in on Alicia and Michelle you have no idea how much that means to them. Michelle is very upset and would just like to ask "Please Pray for her"!

Thank you again,
Krisstina

13 comments:

Charisse said...

Michelle,
Alan and I are praying....and I am ringing my family to pray for Alicia as well. We are with you, girl. We are with you. I know you would be very worried and upset. Praying for Alicia.
Praying for you and Erika as well...
Love Charisse

Anonymous said...

Hi Michelle and Alicia,

We have very spotty internet connection here in WY. Just received Kristinna's update on the FARF site and the blog. John, Michelle and I have just prayed together for Alicia. We will continue to pray for Alicia, \ you, Erika and your whole family. You are all in our thoughts and prayers. I will do my best to find an internet connection tomorrow night. SENDING OUT LOTS OF PRAYERS. Dianne

Anonymous said...

Oh I'm praying so hard! Please, Lord, spare this precious little one!
Psalms 18:30-32 As for God, his way is perfect: the word of the LORD is tried: he is a buckler to all those that trust in him. For who is God save the LORD? or who is a rock save our God? It is God that girdeth me with strength, and maketh my way perfect.
Prayer Bears

Teresa said...

Michelle & Erika & Alicia,

You are all in our prayers. It was a bit of a shock to hear how things are going, and I can't imagine how you all are feeling right now about it. We hope and pray that things improve and that they are able to figure out what is going on and to treat it. Thank goodness you have some support out their with Krisstina. Hang in there. Hugs to you all. We'll be praying for you.

Love,
the Clifton's

Anonymous said...

Oh man. I am so scared for you. Please know you are all in my prayers. What an awful scare.


Hang in there baby girl. You'll get your chicken nuggets as soon as they find out how to fix things.

Hugs.

Anonymous said...

Michelle,
I'm so sorry to hear about Alicia's day yesterday. I cannot imagine going through that. Alicia is very strong and if anyone can get through all of this, it's Alicia. Take care and know that we're all following this and praying for a speedy recovery.

Best wishes,
John Hanna

Kelly said...

Just wanted to let you know we are all sending prayers and hugs your way!!!
Praying for both you and Alicia.
Blessings,
Kelly Bennett
http://www.caringbridge.org/la/marshall_n_amelia

Charisse said...

Hello Michelle, Erika and Alicia,
just me, Charisse, again. I am off to bed for the night here in Australia. We were praying for you during the day today here. We will be praying for you as we go to bed and when I wake throughout the night. If I don't wake, as soon as I wake I will be praying and then I will come and check to see if there is any more news. Erika, I cannot imagine what it would be like to be away from your baby girl. My prayers are with you.
Lots of love,
Charisse

Anonymous said...

Dear Michelle,
Just opened the internet site today (Monday) and read the posting. I was so sorry to learn about the seizures and the things that have happened to Alicia.
I know that you are afraid and worried but hope you take comfort in the fact that Alicia's a strong little girl and that so many people are praying for her.
Will pray extra hard today for Alicia and you so that the doctors can determine what the problem is and work to "fix it".
Please give her a hug and remind her how many people love and care for her.
Love, Mary Ann

Anonymous said...

Michelle and Alicia,

Praying for a better today.....

Miracles, Blessings, and bunches of bear hugs,

Anonymous said...

Michelle,
I just got off the phone with you but I want to let you know I am sending all my prayers your way. Alicia is a strong little girl and she will pull through this. Stay strong and call me if you need to. Give Alicia a great big hug from both Sarah and I.
WE will continue to pray for Alicia, you and Erika.
Love Lori

Eva said...

Michelle, Alicia, Erika and all,
Our thoughts and prayers are with each and every one of you. Alicia is a very strong little lady, she's been a fighter, she'll continue to fight!
Know that we are thinking about you all!
Love and hugs,
Eva and Rodney
www.caringbridge.org/mi/rodneyreeves

Anonymous said...

I keep checking on you today. I'm so very worried about you guys. We sent Alicia a little care package today. She'll probably get it in a week or so. Please know you are in our prayers.

Hugs,
Kristin