Month: October 2010

This past week has been one of those weeks.  One of those weeks filled with ordered chaos.  I have come to realize, more concretely, this past week that everything we do, every experience we have is a part of something bigger, an opportunity to learn and practice the virtues.  I consistently stroll through life looking at the pixels instead of the picture.  This past week I caught a glimpse of the picture, or at least what I pray is the picture.  I am still marveling over it all so, I think I may have to write this, partly,  in chronological order backwards so it will be revealed to you as it was to me.

We had our much anticipated appointment with Dr. Sinn on Monday.  This went well.  He was refreshingly honest.  He recommends the rib graft, like the first doctor.  He told us that this surgery was only a temporary fix, it is very difficult to keep open and 75% of patients re-ankylos and that rate is even higher in someone Lucy’s age.  These things we were told by the second doctor who didn’t want to do a rib graft.  Lucy will need aggressive rehabilitation which we will have to do ourselves, creating a great strain on our relationship with her.  He only recommends doing it at her age if there is some factor like inability to eat, breath or severe tooth decay.  Since Lucy can breath and eat well enough the only factor would be tooth decay.  If her decay isn’t too significant he recommends waiting until she is 8 or 9 to do the rib graft because she will be pre-pubatal and the graft will be more likely to grow.  He said she would need another rib graft at around 13 or so depending on if she re-ankylos’ before then or not.  He also said her CT scan from March is too old and she is likely to have changed by now.  He has a CBCT machine in his office.  They would schedule it so that we could have PLENTY of time to practice with Lucy to get her used to it so she could sit still without sedation, which they don’t even do in their office.  Also, this scan will be better than the one in the hospital and about 1/4 of the price!

Why, you may ask, would I say this went well?  These things the doctor said are the very things that have been freaking me out all year.  Maybe now would be a good time to back up to a few months ago.  As you know, I am a distributor for Young Living.  In the spring they announced that they would have a three day training with Gary Young, the founder, in the summer.  I tried to sign up but it was already full.  I was disappointed but thought it wasn’t meant to be as we didn’t really have the funds for it at the time anyways.  A few months went by and I got another announcement that they had changed the date of the training from the summer to October and reserved a much larger venue so hundreds more could attend.  Again, we didn’t really have the funds so I put it off.  Something (someone) kept nagging me in the back of my head that I needed to go.  One month we had a little bit extra to spare so I signed up.  At this time, we had already seen the doctor in Dallas and were about to have our third opinion.  I was going to try to plan her surgery around the training.  I thought for sure by the time October got here Lucy would have already had the surgery or it would be scheduled for just after the training.  As you know, we have run into road block after road block trying to get a third opinion so that we could move on with the surgery.  Finally, we had an appointment with Dr. Sinn on Monday October 4th, three days before the training started.  Then that appointment got moved until Monday October 11th, two days after the training ended.  I hope you follow this so far.

So the training started Thursday, October 7th.  Within the first few hours Gary Young shared a testimony about  some major spinal problems he was having in 2009 as a result of a major accident in the ’70’s.  Long story short, he had several bone spurs, degenerated disks, herniated disks, etc. etc. and had to be on a morphine drip.  The doctors said he would need extensive surgery.  Gary Young is a great man of God and he took this to prayer.  Like many times in the past, God spoke very clearly to him that he would not need the surgery.  He didn’t know anything other than to tell his doctors he didn’t need the surgery.  Time passed and his wife began to wonder what God’s plan was.  Then one night he was woken and God explained what he wanted him to do.  He informed his doctors and they were skeptical and resistant to do what he was telling them.  He ending up phoning another doctor he know would do the procedure.  Essentially, it was to work with his own stem cells, injecting them into the spine.  This doctor came and did the injections and he was completely pain free and on a plane to Japan five days later.  He has since had several other injections and his bone spurs are going away, his disks are regenerating, his body is healing.  They have also done this procedure on several other patients.  Some who were supposed to have knee replacement surgery who no longer are in need of it.  We got to see the before and after images of these, truly amazing.  I knew that instant that this would be something for Lucy.  I can’t explain it but I really felt like this was an option.

After trying to talk to Gary Thursday and Friday, I finally got to speak to him on Saturday.  He put me in contact with the lady that helps to run the clinic and told me to get all of Lucy’s medical records to them.  Their clinic used to be here in the U.S. but after years of dealing with all of the paperwork and red tape the FDA threw their way, the doctors were spending the majority of their time dealing with this instead of helping patients, they moved the clinic to Ecuador.  Young Living has a farm there where they grow many of the plants that they distill right on location, as well.  He lives there with his wife and children who go to the school his foundation built for the impoverished children near the farm.  Anyways, the lady was kind enough to give me an address in the states she was going to be at for a few weeks to mail all of Lucy’s medical records to.  I have spent this past week getting all of that ready and mailed it all off on Friday.  This week I will need to spend time figuring out what all I need to do to get our passports so we will be prepared to go if they determine Lucy is a candidate for this procedure.

Back to why I felt the doomsday appointment went well.  I guess it was because it was confirmation that my excited, hopeful feelings about this procedure vs. amputating her jaw was the right thing to do.  Dr. Sinn also explained to us why it may be better to wait until she is older to do the surgery.  In the meantime, we can try the procedure.  If it works, praise God, if not, at least we will know we tried everything before taking the drastic measure of amputating her TMJ.  I decided to start calling it that, an amputation.  This is the reality.  She isn’t having some tissue removed.  This is her jaw that will never grow back.  She will live the rest of her life without it.  I am so thankful that Lucy is able to eat and breath.  This affords us the time and relative leisure to try non surgical intervention.  I really am hopeful and truly feel Gods peace about the whole situation.

All along I have let these roadblocks, mix ups and canceled appointments frustrate me, to some degree.  In the back of my head I knew this was all part of God’s plan and timing, but why, how, when was all unanswered.  I only saw the pixels, not the picture.  That day I heard Gary’s testimony it was like all the pixels came together to form a beautiful picture.  It again made me think of that image of Jesus lifting me up so that I could see beyond the horizon, see the picture instead of the pixels.  If it weren’t for all of those roadblocks, mix-ups, unreturned calls, services being denied because of medicaid we may have already had Lucy’s jaw amputated and never had the opportunity to try this procedure.   I feel silly now about my attitude after each of these incidents.  These were all blessings and I didn’t always feel that way.  I’m certain I will be thrown some more curve balls along this journey and I’m sure I will slink ever so comfortably back into only seeing the pixels.  Hopefully, I will keep all of this in mind and fight against this temptation and continue to see the whole picture.

Please pray for us as we continue to discern and maintain our daily lives.  Please pray for Ecuador, as you probably heard, there was some civil unrest going on.  They informed me that they probably won’t be taking patients until the situation is more stable.  I know you all already are, but please continue to keep Lucy in your prayers.  We are praying that her opening doesn’t get any smaller and that we are able to maintain the integrity of her teeth.  I forgot to mention that since she stopped using her plug after she broke her tooth her overbite has gone away.  This is great, as it is a sign of a healthy child but we lost a millimeter or two of opening.  We now only have one type of spoon that can fit in her mouth and giving her some of her supplements has become more difficult.  This has been a great opportunity to teach me patiences.  It does break my heart to watch her opening her mouth, what seems like, even less.  Also, pray for Lucy’s perseverance.  I know not being able to open her mouth causes her great frustration.  We see this daily with her behavior.  We are trying to walk that very thin line between spoiling her to death and not taking into consideration her physical pain and frustration when disciplining her.  Shanti and I and the rest of the kids need prayer for patience, perseverance and all of the virtues.  This whole situation has taken a toll on us all.  In light of this new option, I have renewed hope and continue to take solace knowing all of your prayers are with us.

In Christ’s Peace,

Katie