So Much To Say…

First of all, I forgot to mention in my last post that Lucy’s CT angiogram is scheduled for next Friday, August 5th.  We got all of the confusion on this worked out.  The orders are corrected and she only needs one procedure.  Prayers answered on this.  Although it is just a CT scan and will probably only take a minute, she still may need to be sedated because they have to start an IV and inject contrast.  With all of Lucy’s allergies, I’m praying she doesn’t have a reaction to the contrast…Like not sleeping for a week!!!

Second, I wrote a post on my other blog, Swell Living, entitled “How Does She Eat?”  I get this question all the time a figured I would just write about it.  So I’m posting the link over here in case any of you would like to read it.  The picture at the beginning of this post is from her first birthday.  It’s amazing for me to look back and see that she could open her mouth so wide.  We go through life every day not realizing that we are taking so many things for granted.  I just took for granted that I could nurse her, feed her baby food with ease, swipe my finger through her mouth when she was learning how to eat and would start to gag, massage her gums as her first teeth came in, etc.  I know I do this daily with other things that could be gone in an instant.  I take for granted that Lucy is alive.  I get fed up with her fits, lose my patience with her quirky habits, bored with playing with her and annoyed with the sound of her voice on some days.  She could have easily died 3 years ago when she had mastoiditis and I would be begging God for just one more moment of all of these things.  I do this with all my children and my husband too.  We all do.  I know we are just human and can’t be perfect, but if someone would have told me that my little baby wouldn’t be able to open her mouth much longer I’m sure I would have cherished feeding her, helping her teeth, etc.  Now I look forward to a few months from now when she will be able to open her mouth wide again.  Her capacity to be loud, really LOUD, has not been diminished in ANY way by her small mouth opening.  We are wondering just how much louder she will get once the sound can resonate in an open mouth.  I’m sure once that happens I will fall back into the habit of being annoyed by her voice again…at least sometimes.

Thirdly, we have an update on the fundraising situation.  Thank you to everyone who donated and forwarded my email plea on.  So far we have received $1,700.00 and some of that is from people I don’t even know, which is so wonderful!!  Unfortunately, we have yet to qualify for insurance and I finally got the estimate back from the hospital.

I was going to write “you may want to sit down for this”, but hopefully your already sitting to read this.  Just the hospital portion is $155,828.01.  If you add in her CT angiogram, the surgeon, anesthesiologists and follow up CT scans and care the grand total is more like…$190,000.  It doesn’t seem feasible that we will be able to raise anything close to this in the next three weeks, so qualifying for their 25% up front discount is not an option.  I’m hoping that when the surgery is done and the itemized, detailed bill comes through it will end up being less than this for the hospital portion.  They told me the bulk of the cost is for charges associated with the operating room.  I’m hoping they have over estimated everything.

It’s hard not thinking about this aspect of this situation.  I’d love to be able to just be focusing on Lucy and the rest of the family trying to make this as stress free as possible, but that just isn’t the case.  Of course, prayers for Lucy and a very perfect, successful surgery, recovery and ensuing physical therapy are of top priority.  In addition, if you could please keep the financial end in your prayers, as well, and if you feel led by God to donate or help out in anyway we truly appreciate it.  I hope to send out a short email update in the next few days that you can send on to your friends.

In Christ’s Peace,

Katie Guy