Month: July 2011

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

 

Earlier this week Lucy had her last dental hygiene appointment before her surgery.  This is exciting and scary at the same time.  I know the hygienist will be glad when she can finally get in there and clean all of her teeth properly.  We are all anxious to see the condition of them too.  From Lucy’s last CT scan the surgeon said it didn’t appear that she had much decay but that it wasn’t exactly conclusive.  I’m hoping all of the things we have been doing to keep her healthy have paid off.  Much of the decay on her front teeth that she developed right after her first surgery hasn’t progressed.  This is primarily due to the fact that I have been using the Thieves toothpaste and mouthwash on her religiously.  I have been so pleased with the effectiveness of these products.

I know Lucy is looking forward to being able to open her mouth and truthfully she likes to go to get her teeth cleaned.  She has come a long way since her last surgery.  The first few times we went to the dentist, after her first surgery, we focused on getting her comfortable with the chair.  She slowly progressed to letting the hygienist clean her teeth and then at longer intervals.  We are very proud of her progress and pray that she is old enough now that this surgery will not set her back emotionally in that area or any area for that matter.  So, for any of you adults that make excuses for getting your teeth cleaned, you don’t have one anymore…if a 4 year old who can’t open her mouth and is in constant pain can sit through one, so can you!!  :)

 

In Christ’s Peace,

Katie

 

I have been working very hard over the past several days to get my site up and running and looking good(thanks to my husband!). I think it is finally finished. I’d like to send the link out to you guys first to let you see if it is working for you, specifically the Lucy Mae Timeline. Please feel free to comment here on Lucy Mae or on the new site, Swell Living.

In a day or so I will send out an email with all the necessary information and links for you guys to forward on to friends and family that may be interested in donating to help with Lucy’s surgery.

Please also keep us in your prayers in the coming weeks as we were informed that Lucy would need to have an angiogram and an MRI before her surgery.  She will need to be put to sleep for the MRI for sure and if they can’t do them at the same time she will need to be sedated for the angiogram.  This wasn’t something I was planning on having to do before the surgery.  It especially makes me nervous to have her intubated, nasally, prior to the surgery, but God is in control and I have to put my trust in Him.  This is easier said than done sometimes though.

Thanks to all of you that have already offered your help in many ways when Lucy has her surgery and, of course, for your continued prayers.

In Christ’s Peace,

Katie Guy

 

Today we went to the surgeon to schedule Lucy’s surgery.  I have been thinking alot about this and for some reason August 15th kept popping into my head.  I think mainly because it is smack in the middle of the month and I couldn’t decide if I wanted it to be earlier or later.  The Catholics reading this will note the significance of this date and know that was a contributing factor to my attraction to this day.  I really just left it up to God.  When it got down to the time to pick a date I told the Dr. I wanted to do it in August and he explained that he only operates on Monday’s.  I got out my calendar and started to look at the Monday’s.  August 15th was the third Monday, with two Monday’s before and two after.  It couldn’t have been more perfect.  His calendar was open and so it has been set on his end.  We just have to wait until this coming week for the assistant to call the hospital to make sure there is an opening on that end.  We don’t see any reason for there not to be though.

There are many things to prepare before then…scheduling where the other children will be, determining how long I will be completely occupied with Lucy’s recovery, getting in shape physically, as I’m sure this whole process will be draining, figuring out where/what homeschool co-ops the kids will be taking, how to raise money to pay for this very expensive surgery.  I’m sure there are many, many more things I am not thinking of, but I can only deal with what comes to mind right now and try not to stress too much about it.  I can’t do anything about getting the kids homeschooling organized until I know what co-ops they will be in and that won’t be for a few weeks.  I have been planning on putting them in as many as possible for several months now as I know my time will be monopolized with the very extensive physical therapy Lucy will have to do to prevent her mouth from closing up again.  Lucy is a very strong willed girl and getting her to do something she absolutely doesn’t want to do can be very difficult.  I’m trying not to dwell on this, but it sometimes seems like an overwhelmingly, daunting task…to get her to put an appliance in her mouth and crank it open especially because this will most likely be very painful.

For now, I am focusing on some practical things.  I have been working on another blog, mainly where I will be writing about essential oils, but I am also putting a page on there that will be a modified version of this blog with a fundraising feature.  It will have significantly less information so that I can disseminate it to more people and on Facebook, to help raise the money.  We won’t know exactly how much it will cost until we schedule with the hospital and negotiate with them but the estimates we have been given are between $50,000 and $100,000.  This will also be determined by how well the operation goes.  If she has to stay in the ICU for any time the price will be significantly increased.  The surgeon has been really great and knows that we do not have insurance.  I’m not positive but I’m pretty sure his rate will be discounted.  He also told us he won’t put her in the ICU unless it’s necessary and he knows how we feel about this.  Whatever Lucy needs it should be done regardless of the cost.  We refuse to let that determine her care.

I, once again, humbly ask for your prayers for all of this and, of course, for Lucy and a very successful surgery.  I hope to be updating soon with my new blog and fundraising page, but until then you are all in my prayers.

 

In Christ’s Peace,

Katie