Wednesday, August 17, 2011

Cast, blood, noodles, & email

A few things to update on.  First off is Macy gets her cast off tomorrow!!!  Yeah!  We are happy about that.  Keeping it clean has been hard since she is into everything right now.  I am interested to see if those fettuccine noodles will fall out tomorrow or not....hopefully not (we caught Macy stuffing fettuccine alfredo into her cast the other night at dinner).  I think her Dr. said she has a couple stitches that need to come out, and she will probably get a splint or something to wear for a couple weeks.  I am not sure if her thumb will be fully working yet or not; we will see!

I brought Macy in to get her blood drawn yesterday for her complementation group testing.  She screamed her little head off; I felt so bad for her.  They did get it on the first vein they tried, but her blood was coming out soooooo slow that they had to keep moving the needle around in the vein to keep it flowing.  Seemed like it took forever!  Glad that is over.  Her geneticist said it will probably take 3 months to get the results back if she is an A.  If she's not an A (the most common type) it will take longer.

Macy has her feeding therapy tomorrow too.  Too bad her appt.'s were not closer together.  She gets her cast off in the morning and her feeding  therapy isn't until late afternoon....we will have 3.5 hours to kill in between appt.'s.  Not sure if it is worth driving all the way home or not (35 min. drive one way).  
Macy being silly

Macy trying on her "1" year old birthday crown that she will wear with her  princess dress for her birthday party next month!

I wanted to mention an email I read today.  I am part of the Fanconi group to where everyone emails questions, or updates about their loved one's with FA.  This email contained information that was utterly heartbreaking.  As a parent; it is something that I cannot even fathom.  It was from a young woman (late twenties); who has FA.  She was talking about how she has just been diagnosed with oral cancer.  She said she does not want prayers or well wishes; she wants to die.  She actually sounded angry at those that had emailed her privately to wish her well and to offer prayers.  Her life living with FA has been a horrific one.  As a child her mother was ashamed of her and treated her very badly.  She was locked in the house, and could not leave.  She never had any friends; and views herself as being damaged.  It breaks my heart that she feels this way about herself.  I have been so focused on doing everything in my power so that Macy will live as long as possible.  I would give anything for a guarantee that Macy lives into her late twenties.  I never thought there be a possibility that she wouldn't want to.  I know it's a completely different situation.  We love Macy so much; I would never be ashamed of her for having this disease.  She is completely perfect exactly the way she is.  I just want to her live, be healthy, and be happy.  It is just so sad to hear someone say that they are glad to die.  Even though she doesn't want them; I wish her the best, and am sending prayers her way.

p.s. I changed the picture at the top of the blog.  The old one was when Macy was around 7 months old.  She has changed so much so I put a more updated picture on there.

take care,

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