Month: August 2011

Lucy is still doing really well, improving every day.  Sleep is still an issue but she has had enough anesthesia to last a lifetime and we have been told that anesthesia causes dream/nightmares.  We are anxious for her body to detox all of the drugs out!!  We went to the Dr. today and he is pleased with her improvement.  We won’t start the heavy stretching with the TheraBite for a few weeks.  We are hoping that Lucy won’t have too much pain with this process because getting her mouth open to maximum width is key to her being able to maintain the artificial joint until she is a teen ager.  The Dr. was very pleased with the amount she can open already.

Compared to before surgery this is great.  The first time he saw her after the surgery he was almost moved to tears.  As you know, Lucy is the youngest person this procedure has ever been done on and he was not only proud of his work but very happy for Lucy and so glad that he was able to help her as he loves to help kids.  He works on adults more than kids, I believe.  Lucy would tell you it’s not a kids office because she always asks them for a sticker and they don’t have them.  Everyone is smitten with her cuteness so much so that on one appointment there were women searching everywhere for stickers for her.  They ended up giving her some stickers that had come with some address labels!!

Thank you so much for your continued prayers for us.  I will try to update as time permits.  We are very busy dealing with all of Lucy’s needs and fitting everything into our schedule.  Also, we have started homeschooling again and are trying to iron out that schedule as well.

Please keep my friend’s baby boy and his family in your prayers.  He was born on August 23rd and the next day taken to the hospital for some very strange behavior.  They were about to release him because he had not exhibited anything unusual while in the NICU and then he turned purple and brown.  This prompted more tests and they discovered that he had a massive stroke sometime within the past 7 days, possibly in the womb.  This stroke caused some damage to the left side of his brain and could cause some developmental problems concerning muscle development and speech.  Since he is a baby though it is highly probable that the brain will compensate as he learns new things and just form other pathways.  They are asking for prayers that the next MRI will show improvement in the damaged area.  He will remain in the NICU for a few weeks to ensure that the seizures caused by the stroke are under control. Please keep this family in your prayers.

In Christ’s Peace,
Katie Guy

Well, I obviously understated a few things on my last post.  First of all, I didn’t get an update out the next day like I had hoped.  Second, when I said we had some trials, but “nothing too horrible”, I was in denial!  I think I wrote in one of my earlier posts that Lucy had wires in her mouth that we would later need to put rubber bands on to close her mouth.  At the time I didn’t know all the details.  Apparently, they wired her jaw shut during the surgery to keep it in the correct position when they installed the artificial joint.  Shanti thinks they wired it shut before they sawed the mass of bone off to hold it in place too.  This would make sense because these wires were a tangled mess cutting into her gums and mangling her lips.  She had dead skin sloughing off all over her gums and lips.  Like I said before this had been the only thing she had been complaining about.  When she awoke from surgery one of the first things she said was “What is in my mouth, get these things out of my mouth”, followed by repeated complaints of “Get these stupid wires out of my mouth”.

You can see in the picture her lip entangled in the twisted wires in the front.  We could tell in the hospital that it was pretty bad but we had the resident look at them and he said “they don’t look too painful to me, we do some really painful things to kids and these don’t look too bad”.  Of course, this was after only taking a milli-second look at them.  Once we got home and she started to eat more, she started to complain more and more.  She wouldn’t eat anything that would touch her gums.  Wednesday I called the Dr. and they got us in right away.  They saw her lips were stuck in the wires and decided to pull them off the tangled mess and put wax on the wires.  The doctor told us if they were still too painful to use with the rubber bands he would just take them out.  We went home that day with Lucy feeling MUCH better.

The next morning I went to check the wax and it had slipped up off the wires and her lip was right back in the twisted mess.  I called the Dr. and told them and they said to start fasting Lucy and they would call me later when she could come in.  That was at around 10 in the morning on the third day after surgery.  I think Lucy had hit her limit.  We had quite a rough day.  Lots of screaming and fit throwing.  She proclaimed she wanted to keep the wires and eat.  I tried to remind her about all the days of complaining about the wires but all she could think about was eating.  I managed to distract her for bits of time here and there until they finally called and told us to head in to the office.

They happened to have an anesthesiologist in the office that day for another surgery so they were really trying to fit her in.  Thank God they did.  We got there and within a few minutes they were ready for her, which is good because she had started screaming in the office for food.  I carried her back and she had her arms and legs wrapped around me so tight they had to peal her off and hold her down to put the mask on her.  She went to sleep kicking and screaming. About 10 minutes later they called me back before she woke up.  In a few minutes she woke up kicking and screaming.  The poor thing was so tired that she fell asleep for awhile before she finally woke up to drink a bit before they would release us.  While she was out the Dr. also took off the rest of her bandages.  During her surgery they covered the sutures with steri-strips and a giant plastic circle that covered half her cheek and both incisions.  He said it would have taken us several days to get it off working on it after a shower or bath.  I’m sure this saved us many tears and fits.

Lucy was one thousand times better with the wires off.  That night she was laughing and smiling.  Before she would hardly move her lips or mouth and I can see why.  She is now almost back to normal, with the exception of some night terrors, swelling, sporadic crankiness, and hyper sensitivity to things not going exactly as she wants.

Now that she is feeling a better I am starting to work on her behavior.  It’s amazing what a few days of spoiling a child out of complete necessity can do.  We are doing a lot of  “try agains” and apologizing for yelling and screaming at her siblings.  You would be amazed that she can scream already.  I can’t believe it doesn’t just kill her jaw to do it.  I imagine it may make her swelling last longer though.

Today I caught her yawning for the first time since her surgery.  This was a big deal to me because before the surgery watching her yawn was one of the most painful things.  Her mouth would open that tiny bit, her jaw would stop as if it had hit a brick wall and her lips would try to do the rest of the yawn.  It always made me want to cry when I saw her yawn before.  Today she yawned and while her mouth can’t open as wide as it will after a few months of painful therapy, it opened about 14 mm and quivered.  I asked her if that felt good to yawn and she smiled and said yes.  I could tell she was proud.  It’s funny how something like a yawn can be such a big deal.  I’m doing a lot of yawning these days and I try not to take it for granted even though I’d rather not be this exhausted.

The other kids are all handling it pretty well.  Everyone is pretty exhausted.  I think the level of stress in the weeks leading up the surgery was so high we were all operating on adrenalin and now that is slowed down we are all crashing.  Miles is the one having the hardest time.  Since him and Lucy are so close in age and relationship, he is dealing with feelings of sadness over how many new toys she got.  They are both very glad to be back playing with each other though.  They play, fight, I separate them, then they ask why they can’t play together.  I guess that is just how it is.

Thanks again for all of your prayers and support.  We know the graces poured out on us through your prayers, fasting and masses offered are abundant.  We certainly could not have made it this far without them.

In Christ’s Peace,

Katie

Just a quick note to let you guys know we were discharged yesterday evening. Lucy is doing very well. She has been up and playing already, even last night. We have had a few trials but nothing too horrible. I will fill in more details tomorrow as I am falling asleep and brain dead. I wish I could write a very heartfelt, personal letter to each and every one of you expressing my gratitude, but this forum will have to do for now. Thank you, thank you, thank you for all of your prayers, support and everything else that you have done that I am unable to think of at this time. I pray that going through this experience with us has touched you in such a way that it brings you ever more close to the Love of God. Lucy has definitely shown us that. Her ability to handle things and some of the things she says makes you know that the innocence and purity she possesses are the key to discovering God’s infinite Love. I hope to able to share some of these stories with you in the future.

In Christ’s Peace,
Katie

Lucy is doing well. As you can see from the photo above she can open her mouth significantly more. That is probably like 8-10 mm. She was at 4 mm before surgery. In the operating room the surgeon used the orastretch press I talked about last year to stretch her mouth open to 34 mm. Of course, so was unconscious, completely relaxed and couldn’t feel a thing. When we do this at home it will be another story.

For the amputation and artificial joint installation they had to detach her muscles from her lower jaw. This means it may now be hard for her to keep her mouth closed until the muscles reattach. Therefore they installed wires around her teeth on top and bottom. They are wrapped around several teeth to stay in place and then they have hooks coming off of them that we will attach rubber bands to later this week. This has been what she has been complaining about the most. She keeps asking to get them out if her mouth!!

She is doing remarkably well considering all she has been through. Her swelling showed up last night and is very minimal and not too much bruising either!! I’m sure this is in direct correlation to all of the prayers and sacrifices on her behalf. Again, we are so grateful for the support of family, friend ms and probably hundreds of people we don’t even know.

The ICU has been great. The nurses are wonderful and really look to us for direction on how Lucy is doing, does she need more pain medicine, asking what we want to do, letting me give her the meds, take BP cuff off to get her comfortable, etc. Such a different experience from 3 years ago. We defiantly are not being treated like degenerate prisoners this time, even though we have the tattoos!!

They plan to move her out of ICU sometime today when a bed opens up and if she does well she may go home today. We are hoping they will get us out of the ICU before it rolls past 24 hours. While it’s been great, she is stable and no longer in need of it and I’m a little worried about how this will affect the final bill. Not too much though, I know God will provide.

From her CT scan until the surgery we raised just enough money for the down payment!! Two times in a row. Pretty cool.

Anyways, I guess that is it for now.

In Christ’s Peace,
Katie

Lucy has been out of surgery for seversl hours. She is in the ICU for the night just to be safe. She has woken up several times complained about tube in her nose and everywhere else. She was crying and asked for a tissue to wipe her tears and did it herself. Was super thirsty and drank a whole cup of water. They took the tube out of her nose, CATH out, arterial line out, took pain meds orally, sleeping. She wakes periodically and talks but then goes back to sleep. When the Dr came in to check on her she was sleeping and he tried to wake her and get her to move her lips and eyebrows to make sure there was no nerve damage. He asked her if she would and she shook her head no with her eyes shut.

Just a few minutes ago she got up and sat on my lap so the nurse could change the sheets. She keeps trying to do things by herself, sit up move her head. I don’t know where she gets her independence from.

Anyways sorry it has taken so long to update it has been pretty hectic. I know you guys have been storming heaven with prayers. We are eternally grateful and you all will be in our prayers as well.

Sorry if this is incoherent, I’m pretty tired!!

In Christ’s Peace,
Katie

I just wanted to write a quick note letting you guys know that the surgery started. They took her back around 8 am and started all the prep work. She was sedated without a fuss, nasally intubated and stable when they started the surgery at 9:15. They have called a few times with updates. Lucy is still doing well. They have removed the bone and are deciding which joint to use or if they can use an artificial joint. I will try to update later with significant information. Thank you so much for all of your prayers. I know we could not make it through this without them.

In the below picture you can see where they marked the right side of her face and the doctor initialed it. Just to make sure the correct side was done. :)

In Christ’s Peace,
Katie

I have had the idea for many months now that I would write about my other kids, at least once.  I hardly find time to write coherently about Lucy’s updates, so this idea was not prioritized.  Well, God reminded me of it again and this time he used words, through someone else’s mouth. So I’m not only listening, but acting!!!

We have four other children besides Lucy.  She is the youngest.  I will focus today on my oldest son, Jake.  There he is just a few days old.  It seems like just yesterday and now he is 16 years old and will be a junior in high school this fall.  WOW!  I can’t believe that.  Time flies so fast.  If you look closely at the photo at the top of his head you can see a very large swelling.  This is where his head proceeded to hit my tailbone through four hours of pushing.  Me, being a naive 20 year old, thought that labor and delivery would be uneventful.  Looking back this event has set the stage for just about everything in our lives.  Nothing is “uneventful”.  I still remember the Irish nurse, who told us she was a midwife back in Ireland…NOT!, saying with every contraction “push, Tracie, push”.  Tracie is my sister-in-law who was at the birth.  Anyways, Jake decided to keep his head in the posterior position throughout labor and pushing.  Therefore, he was born by c-section 30 some odd hours later.  He was a very good baby.  Slept, nursed, etc. all great.  Jake was also a very advanced baby.  He stood before he could crawl, he climbed before he could walk, he walked at 9 months, talked in complete paragraphs before he was potty trained, and stood during his entire baptism…

Here are some more pictures.  The family photos seems so small.  It must have been so easy to take them with only one child.   I couldn’t choose just one of such a cute baby.  I’m sure you’ll notice Jake wasn’t the only one who looked like a baby either.

Click on the photos to enlarge…

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Jake began to be interested in art at a young age.  When he was around 7 or 8 years old he started to make stop animation videos.  Since these were all done on a non digital video camera I won’t be able to post them here for lack of time, but he was very creative.  He also has been drawing since he was very young.  He has really polished his skills over the years.  Here are a few examples of his more recent work.

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Two years ago Jake and Ely expressed an interest in taking piano lessons.  We had no idea that they would be so talented.  They started to take lessons in August of 2009 and by Jakes first recital he had learned to play the “Can Can”.

Over the course of the next few semesters he learned several more complicated pieces as well as writing some of his own music.  I will leave you with a few videos of his recital performances.  I hope you enjoy reading about my other children for a change of pace.

After only four months of lessons Jake performs Hard-Driven Blues and the Can Can.

This recital was after only 9 months of lessons. Jake performs St. James Infirmary Blues and The Pink Panther.

After only 1 year and 9 months of lessons Jake performs St. James Infirmary Blues that he arranged himself and a piece he wrote himself “Untitled”.

In Christ’s Peace,

Katie Guy

So, what I didn’t share the other day about Lucy’s CT scan was that they made us pay cash up front for the CT scan.  I had just enough money in my account to pay for the scan, around $2300.  Well, I say $2300 but they just charged me for the CT scan not the anesthesia or angiogram.  I wasn’t going to argue, I just paid it at the time.  I later started to think about it.  I started to think about all the donations we had received so far, many around $10-$25, some larger, the largest $700.  I had a feeling that what had been donated was just about what we needed to pay for the CT scan.

Today I sat down and added it up.  Every donation we received before her CT scan added up to just about the same as we needed for the scan, a little bit more.  Isn’t that just awesome!!  It’s like God is saying don’t worry, I will provide just what you need.  I have been trying not to worry about the cost of her surgery.  I will try to take this example to heart and know that He will provide just what we need for her medical bills.

I know some people have said that they feel like donating $10 isn’t going to help, but it was all of the small donations combined with the larger ones that provided enough money for us to pay for the CT scan.  Never underestimate the power of small acts!!

Thank you very much!!

In Christ’s Peace,

Katie Guy

Just a quick note to let you all know that Lucy’s CT angaiogram went well today.  The anesthesiologist was pretty concerned about the fact that she could not open her mouth.  She told me that this is an anesthesiologist “Worst case scenario”.  There was some confusion about what kind of juice Lucy had consumed at 6 am, so just to be safe, she made us wait an extra three hours.  She said if Lucy were to throw up she would choke because there would be no way to suction her.  She said nasal suction could be attempted but it would be very difficult.

Thanks for all of your continued prayers.  Lucy did very good in that extra three hours.  Nadine came with and was a huge help.  Of course, a bribe trip to the gift shop helped her to not complain too much.  We have 10 days to go…please continue to pray for us.

In Christ’s Peace,

Katie