FRIDAY, FEBRUARY 17, 2012 8:57 PM, EST
written by Heather Dalik
Uneventful
Nothing really to report this week. Just a quiet week with a rowdy two year old. Cora's newest phrase goes something like this
Cora - "Mommy, get my cereal for me"
Me - "I can't right now, I am driving"
Cora - "I said right now!" Cute, eh?
She is also very interested in her scars and port. Lately, Cora has no use for clothing, which lends itself to questions about her scars. I told her about her port, her medicine and how she was sick. We talked about how Andrew gave her a special present called bone marrow (I am sure she imagines this thing called bone marrow in a box with a beautiful bow.) We talk about how her scars show her courage. We talk about how her medicine made her hair fall out and we gave it to the birdies for their nest. I have told her this story many times this week. She listens with wide eyes and tries to make sense of what I am saying. I know what I tell her will be her memories and I have to create those memories to be truthful and show courage.
Our clinic visit was a bit long this week because I forgot to put on the numbing cream, used before a port access. Cora didn't mind and played in the playroom while we waited. Her potassium level is returning to normal so she can have a banana every other day. Yeah! Her IGG level is 480 and this means the time has come for another IGG infusion. This is the medication she had a reaction to in December. Nancy told me we will switch brands, infuse it very slow and keep a very close eye on her. Typically, children do very well with the different brand. Nothing about Cora is typical so I will be a ball of stress on Thursday.
Feb 28 is day 180, post transplant. Any suggestions for a celebration? I am a little tired of donuts and icecream!
Please continue to pray for Cora's health and add an extra prayer for her on Thursday that the infusion goes without incident.
Be CORAgeous!
Cora - "Mommy, get my cereal for me"
Me - "I can't right now, I am driving"
Cora - "I said right now!" Cute, eh?
She is also very interested in her scars and port. Lately, Cora has no use for clothing, which lends itself to questions about her scars. I told her about her port, her medicine and how she was sick. We talked about how Andrew gave her a special present called bone marrow (I am sure she imagines this thing called bone marrow in a box with a beautiful bow.) We talk about how her scars show her courage. We talk about how her medicine made her hair fall out and we gave it to the birdies for their nest. I have told her this story many times this week. She listens with wide eyes and tries to make sense of what I am saying. I know what I tell her will be her memories and I have to create those memories to be truthful and show courage.
Our clinic visit was a bit long this week because I forgot to put on the numbing cream, used before a port access. Cora didn't mind and played in the playroom while we waited. Her potassium level is returning to normal so she can have a banana every other day. Yeah! Her IGG level is 480 and this means the time has come for another IGG infusion. This is the medication she had a reaction to in December. Nancy told me we will switch brands, infuse it very slow and keep a very close eye on her. Typically, children do very well with the different brand. Nothing about Cora is typical so I will be a ball of stress on Thursday.
Feb 28 is day 180, post transplant. Any suggestions for a celebration? I am a little tired of donuts and icecream!
Please continue to pray for Cora's health and add an extra prayer for her on Thursday that the infusion goes without incident.
Be CORAgeous!
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