Lucy Mae

I’m sorry it has taken me so long to write this update.  After getting the kids to bed I had a very neglected house that needed some attention along with making a cake for the birthday girl tomorrow.  Right about now that $55 gluten free cake from Sublime Bakery sounds like a great idea, oh well.  Thank you so much for all of your prayers and support.  Lucy’s tooth was removed this morning at the oral surgeons without a hitch.  She was sedated in the office without any complications, except for the fact that she did NOT like the shot.  She’s still talking about it.  I got to be with her up until she was out of it and they could get started.  I went out into the waiting room, they gave her a shot of Novocain and pulled her tooth and I was back in there in about 15 minutes before she woke up.  We were able to leave once she started to wake up a bit.  Needless to say, she was quite out of it and repeated over and over how hungry, dizzy, tired, sick etc. she was.  Once we got home I got her to go back to sleep for a few hours.  She woke up and was still somewhat tired so she watched a movie.  By the time it was over she had eaten and was walking around.  Once she started to walk around I saw her feel the hole in her mouth where her tooth once was and let out a huge sigh and said “It feels SOOO much better!!!”  I asked if she was still numb and she wasn’t.  Then I asked if it felt better with her tooth out and she concurred.  Next she skipped off to the bathroom to look at her hole in her mouth.  She said she liked it.  The next thing I knew she was outside jumping on the trampoline with her brother.

Apparently, Lucy had been in some  pain with this tooth and/or abscess.  For her to exclaim that it feels so much better now is pretty amazing seeing as the Dr. basically cut out the abscess.  There is a chunk of her gum missing.  Now we can focus on getting her jaw healed.  I’m certain with some of her pain relieved this will be an easier task.  I hope to keep you updated with good news about her jaw soon. Please forgive any mistakes in this post. I am exhausted and going to bed now.

In Christ’s Peace,
Katie

OK, so we had our appointment this morning and the dentist suggested that we take Lucy to an oral surgeon. He has an anesthesiologist that comes in the office but he’s not scheduled to come in anytime soon and Lucy needs this festering tooth out as soon as possible. He gave us a referral and suggested we try Dr. Sinn as well. I called Dr. Sinn first since we have been there before. That call was inconclusive. I’m waiting on a return call from them. I then called the referral and they promptly scheduled us for tomorrow morning. Lucy will be sedated so she will have to fast from midnight tonight. Our appointment is at 9:15 and I’m sure we won’t get started until closer to 10:00 so I will have to think of some serious distractions!! Lucy usually wakes me up at 6:30 am saying how starving she is. I appreciate your continued prayers especially for Lucy’s fasting and recovery as her birthday is Friday, she’ll be 4, my how time flys!!! I’ll try to update as soon as possible tomorrow.

In Christ’s Peace,

Katie

Well, things don’t always go as planned. We went to the appointment as planned. Lucy did really well up until she had to get the shot of novocaine. It was just too much for her to handle. She started to cry every time the needle touched her gums. So we stopped and decided that she needs to see a pediatric dentist whose office is equipped to possibly sedate her for the procedure. This is actually good news because this means that they could fix any other decay on her front teeth at the same time. I spent the afternoon calling around to dentists to find the right one. First, I tried the other holistic dentist in Fort Worth, who actually has an anesthesiologist that comes into the office for procedures but he is booked up until the middle of January. I then called a pediatric dentist and asked my first question “do you do mercury filings?”. Their answer was yes so no need to go further. If you want to know why you can check out this link. I lucked out on dentist number two though, whose name I got from my sister who just took her daughter there for the first time. When looking up their website they state they are a mercury free dental practice!!!! Yeah!!! No worries about bringing Lucy into the building. Our appointment to meet the doctor and discuss our options for the distraction and filings is next Wednesday December 8th. Until then we continue to do our routines to keep Lucy’s mouth clean and healthy, as healthy as it can be with an abscess. Thank you for you prayers and kind words.

Dear Family and Friends,

I can’t believe it has already been six weeks since I last posted. Truthfully, I have been overwhelmed and brain dead. I’m pretty particular when it comes to my writing and I just haven’t felt like I had it in me to put something eloquent down. I realize this is a pretty prideful way to approach a blog that is meant to update people about my daughter and specifically, with this post, to ask for prayers. I’m sure you wouldn’t care what I wrote as long as it was coherent and you knew what was going on with Lucy. So, here I am, writing…

Since I last wrote we have applied for our passports and are anxiously waiting their arrival. Lucy was quite nervous when we went to the courthouse. She thought we were going to the hospital. Her passport photo looks like a mugshot of a three year old about to get a twenty minute timeout. I have also sent off all of the necessary information to the clinic that would be doing the stem cell injections. I am waiting on the passports before I try contacting the clinic for more details. If they contact me in the meantime no big deal, I just don’t want to contact them saying “when can we schedule Lucy…Oh wait we don’t have our passports we can’t come then.”

A couple of months ago my mother attended a funeral mass at her church. To her surprise, when her priest spoke about the woman during his homily he brought up St. Charbel. This woman was of Lebanese decent and had given Father a relic of St. Charbel. It is a part of Catholic tradition to venerate relics of the Saints. I know I wrote about relics in my post about Mother Teresa but I thought I would try to explain them better with a quote from catholic.com:

Keep in mind what the Church says about relics. It doesn’t say there is some magical power in them. There is nothing in the relic itself, whether a bone of the apostle Peter or water from Lourdes, that has any curative ability. The Church just says that relics may be the occasion of God’s miracles, and in this the Church follows Scripture.

If these aren’t examples of the use of relics, what are? In the case of Elisha, a Lazarus-like return from the dead was brought about through the prophet’s bones. In the New Testament cases, physical things (the cloak, the shadow, handkerchiefs and aprons) were used to effect cures. There is a perfect congruity between present-day Catholic practice and ancient practice. If you reject all Catholic relics today as frauds, you should also reject these biblical accounts as frauds.

The use of the bones of Elisha brought a dead man to life: “So Elisha died, and they buried him. Now bands of Moabites used to invade the land in the spring of the year. And as a man was being buried, lo, a marauding band was seen and the man was cast into the grave of Elisha; and as soon as the man touched the bones of Elisha, he revived, and stood on his feet” (2 Kgs. 13:20-21). This is an unequivocal biblical example of a miracle being performed by God through contact with the relics of a saint!

Similar are the cases of the woman cured of a hemorrhage by touching the hem of Christ’s cloak (Matt. 9:20-22) and the sick who were healed when Peter’s shadow passed over them (Acts 5:14-16). “And God did extraordinary miracles by the hands of Paul, so that handkerchiefs or aprons were carried away from his body to the sick, and diseases left them and the evil spirits came out of them” (Acts 19:11-12).

So with this tradition in mind we asked Father if Lucy could come and be blessed with this relic. A few weeks ago we finally had our appointment and Father graciously offered to administer the Sacrament of the Sick to Lucy as well. In case you are unfamiliar you can read about this Sacrament here and here. The following day Lucy’s broken tooth abscessed horribly. I was able to get it under control using essential oils that day and was hoping for a miraculous cure and regrowth of the broken part but this was not part of Gods plan. The next day I spoke to my father-in-law, our dentist, it seemed clear that the tooth must come out. I had wanted to be able to keep this tooth healthy and intact until the normal time it would fall out so she wouldn’t have a big hole in her mouth but after this ordeal I am ready to let it go. Who knows how much pain it has been causing her and we know how hard it could be for the body to heal when the person is in constant pain. I know her jaw already bothers her so anything we can do to lessen her pain right now the better. As well as, I am constantly being reminded of some of the words Father recited several times in the prayers for the Sacrament of the Anointing of the Sick. To paraphrase it was something like this. Lord, we ask that you make Lucy whole, through the healing power of this Sacrament heal her body and soul and make them whole again. I know she didn’t have a miraculous regrowth of her broken tooth but I am confident that the timing of the abscess was not an coincidence. God wants this tooth out for whatever reason and I can accept that even if I don’t know exactly why.

The tooth extraction is scheduled for December 2nd, tomorrow morning at 8:30 am. I ask that you please keep this in your prayers. It has been some time since Lucy had to submit to something that could be painful. I’m not sure what her reactions are going to be to the whole process. It took us a lot of persistence and patience to resolve her fear and anxiety at doctors offices. The experience at the passport office proves that this is not completely gone. Please keep Lucy, myself, the Dr. and staff that will be working with her tomorrow in your prayers. I’m sure all will go well and I will be able to update tomorrow with the outcome. Again, I can’t thank you enough for lifting us up in your prayers.

In Christ’s Peace,

Katie Guy

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

It has been awhile since I have posted an update. The main reason is that I have been working on moving my blog over to WordPress. As much as I love Apple, iWeb was just lacking in some of the features I wanted. One cool feature available is to subscribe people to your blog posts. Most of you reading this I subscribed because you were receiving my email updates. This makes things a little more easy for me. You will now automatically be emailed every time I upload a new post. You can very easily unsubscribe yourself directly on the blog on the right hand side. If you do unsubscribe yourself you will have to remember to check back periodically to see any new updates to Lucy. I hope you will take a look around and let me know what you think.

Since I last posted we had been waiting on an appointment with another doctor for a third opinion. That appoint was scheduled for September 17. I say ‘was’ because the morning of the appointment, about an hour before it, the doctors office called to cancel. Apparently, the doctor had looked at the schedule the morning of and noticed that we were self pay, in addition to Lucy’s condition, which is one he doesn’t treat. He was actually being very kind, trying to save us a couple hundred dollars for him to tell us he didn’t treat the condition and give us a referral. Instead, he gave the referral over the phone, saving us time and money!! This referral was to a Dr. Sinn. “Who?”, I asked the nurse a few times before I proceeded to ask her to spell it, hoping that I was just misunderstanding her. Nope, no misunderstanding with the exception of the extra “n”.

I got off the phone discouraged for several reasons. First of all, when I first contacted their office I explained in detail Lucy’s condition to a couple of different people who assured me he treated the condition. This was three months ago! We have, essentially, been waiting on this appointment and opinion to make our final decision, not doing anything else as we saw this as the last step. Secondly, we were being referred to Dr. Sinn…I got off the phone thinking “She just referred me to Dr. Evil”. I was joking that if he was anglo, which he is, his name came from the old country just like “Mason”, “Shoemaker”, “Blacksmith”…”Sin”. When they moved to the new world the family added the extra “n” to change it up a bit. This was all on the day I was very disheartened about the canceled appointment. I’m better now and my mother brought to my attention a verse that God showed her in prayer. “Where sin abounds, grace abounds even more” Romans 5:20

So here we are again, waiting. After a few hiccups, no surprise there, we finally have an appointment for next Monday October 11th. Until then, I’m not sure what to do. Do I try researching to find another doctor just incase this one does not pan out? Several people have mentioned looking elsewhere in other cities, Houston, Mayo Clinic, etc. I have attempted a few quick searches on the internet and of some clinic websites without much luck. I did, however, find on one search numerous doctors in middle eastern countries that have treated the condition. Most of them have case studies with similar protocols as the first and second opinion we received. I did find it very interesting the high rate of ankylosis of the TMJ in those areas.

Regular life keeps me pretty busy, for now, I think I will just wait until next Monday and then try to decide where to go from there. Prayers for continued endurance of this sometimes exhausting race and for discernment once we see the third doctor are always appreciated and greatly needed.

I think the saying “God never gives us more than we can handle” is put in better perspective when we take into consideration all of the spiritual support we receive from the Communion of Saints. Imagine trying to hold up all of our troubles by ourselves. It seems impossible. Now imagine that every person who is praying for you is holding a little piece of it. Usually, each person that is praying for you has asked at least one other person, if not many more, to lift your situation up in prayer. Feel how much lighter the load is. Today, I thank all of you for taking off some of the weight. Weight which can sometimes drag us down. I recently heard a saying. This saying was a tremendous visual for me. “…what we call death is only a horizon which is the limit of our sight. Lift us up, strong Son of God, that we may see further.” That weight being lifted off of me by your prayers allows me to be lifted up, willingly, by the “strong Son of God” to see further, beyond the horizon.

A few months ago we got a State Parks pass. We decided that once a month we would venture out to a different park. This month we chose Dinosaur Valley in Glenrose. Once again, Lucy had ballet on the brain as she proceeded to call it “Dinosaur Ballet” the entire time, despite several of her siblings numerous attempts to correct her. So Dinosaur Ballet it is.

We had a fun time, in spite of the fact that I spent much of the time being an overprotective mother. We began our day with a hike, a hike up and down some steep trails. Trails which Lucy wanted to go up and down very quickly, like any normal 3 year old! It’s times like these that I view Lucy as a-not so normal-3 year old. Her track record on falling has not been great over the past month. Fortunately, Shanti decided it would be best to just stick her on his shoulders for a bit and we got to enjoy a “normal” hike. Can you call a hike “normal” with five kids? We had to cross over a river to get to the trail we wanted to hike. On our way out of the trail we were crossing back when another group was crossing over. They made our, not so normal, group look pretty normal. There seemed to be a few pairs of adults with a half dozen boys or so, several of which were “riding” their bikes over, through and all around the river, I’m assuming, on their way to a trail. That was the lsat we saw of them but I’m glad we didn’t drag any bikes along. After our hike we headed over to a different area of the river. If you have ever been to Dinosaur Valley you know that the Paluxy River runs through it and there are some great areas to swim. We have been there many times and once before at this time of the year when the river was completely dried up with the exception of some stagnant pools of water, in fact, that was when I was pregnant with Lucy. This year we were blessed with a flowing river, flowing, yet very warm and not something I wanted Lucy to swallow. All the kids enjoyed the swim but we soon left to go eat some lunch. We happened upon a wonderful restaurant in downtown Glenrose, Riverhouse Grill. Great fresh food, grass fed beef, very friendly staff and owner! If you plan to visit Glenrose Texas I highly recommend it. It’s well worth the drive.

Some other news since I last wrote is that Lucy is officially over her addiction to her “plug”. We have had a few weeks of going to sleep better and not asking for or even mentioning it. Thank God for that!! Even though it was hell to go through that abrupt detox, in hindsight, I’m glad we did it now rather than right before or right after her surgery. This will make that very strenuous time a little less chaotic. Speaking of “plugs”, Lucy’s guardian angel has been hard at work again. She was playing with a metal slinky in the same room as me. I didn’t notice until it was too late. My vacuum was plugged in to a wall socket and she was putting the slinky on the cord, with the cord up between the slinky “rings”. I’m assuming she was sliding it all around the cord playing with it, probably pretending it was a ballet dancer and then decided to hang it up near the top where it was plugged in. Ely and I were not more that three feet from her and saw this giant flash, her throw half the slinky one way and the other half the other, smoke and the wall socket and vacuum plug were completely black. The slinky was cut in half and she made such a shock that she blew the circuit breaker. I am so thankful we have the circuit breaker as she would have been much more severely injured had it not tripped. She suffered a very small burn on her finger that blistered up in the shape of the metal. Lucy was very shaken, as were Ely and myself. I quickly became upset with her as she has done this once before in her bedroom while playing by herself. That time it was a metal necklace and I wasn’t in the room. In fact, I didn’t even find out about it until I found the severed necklace and the blackened plug and wall socket. Needless to say, she had already been spoken to thoroughly about the dangers of playing with things near the plugs/outlets, but she gets very stuck in her imagination when she is playing. I think this time it scared her more, along with the shock she received from it. Hopefully, she will NOT do this again.

Yesterday, we were very blessed to go see the relics of Blessed Mother Teresa. God’s Providence lead us there. I was going to blow it off because everything I had read said you could view the relics AFTER the 6pm mass. Then I spoke with a friend who told me we actually could arrive at 4:30. We did and were able to stand in a short line and view everything with peace. My friend stayed for mass. She said I was lucky to come early as it was CRAZY afterwards, crowds of people everywhere.

Let me backtrack for a moment. I had gone to the store that morning and ran into a friend. We started to chat and I told her about how we were going to go see Mother Teresa’s relics. I then told her how I was taking Lucy and that Mother Teresa only needed one more miracle to be beatified, become a Saint, and I was going to present her with a perfect case (in my imperfect opinion).

After our conversation I realized what I said must have sounded crazy to a protestant. I always forget when I’m not talking to someone Catholic and say things that could be construed the wrong way, if the person doesn’t know all of the nuances of Catholic “speak”. I want to take this opportunity to clarify what I said. The miracle is not performed by Mother Teresa. As Catholics, we believe in the Communion of Saints. We believe the faithful who are dead and living have a great connection and that we can ask the dead to pray for us just as I can ask you to pray for me. When a miracle is attributed to a Saint it is not through their powers that this miracle occurs but through their most holy, fervent prayers to God on our behalf. God chooses to grant miracles, to us on our earthly journeys, through the intercession of the Saints. He does this to honor the Saints holiness, their persistent efforts to live in the path of Jesus Christ. God wants to highlight these Saints because He knows their example will help us to the holiness we are all called to be. In any case, she knows who she is and I’m sure she will read this, at least I hope. It’s also very possible she didn’t even interpret what I said how I thought, but I thought I would clarify just the same.

At the viewing we were given a holy medal that they let us touch to her first class relics (lock of her hair and drops of her blood) making our medal a third class relic. They also gave out, to those who were ill or in greater need, holy cards with a second class relic in it. Lucy cherished these. That night when putting her to bed she said “Mom, thank you for getting me my new holy card and medal. I love Teresa, she blessed me!”. She now makes me pray the prayer on the back of the Mother Teresa card every night for her healing along with the St. Charbel prayer. I pray that you will never cease asking the Angles and Saints for their prayers of intercession. I know this gives them great joy to spend their heaven helping us reach our ultimate goal, the presence of God for all eternity.

Blessed Teresa of Calcutta, you

allowed the thirsting love of Jesus

on the Cross to become a living

flame within you, and so became

the light of His love to all.

Obtain from the Heart of Jesus…the

healing of Lucy’s jaw.  Teach me to

allow Jesus to penetrate and

possess my whole being so

completely that my life, too, may

radiate His light and love to others.

Amen.

Well, we are back on the roller coaster again with the exception being, I am used to it now. We went back to Dallas for a second consult with Dr. B at the International Craniofacial Institute. I had some questions about the first procedure he recommended (forcing the jaw open while under anesthesia) and the extra bone growth. Apparently, the Dr. had re examined Lucy’s CT scan and enhanced it and came to the same conclusion as I had: question the effectiveness/safety of forcing the jaw open blindly and the extra bone growth. We met and went over the CT scan. You can see in the photo above her right joint is significantly larger than the normal one on her left, your right.

The prognosis is that Lucy will in fact need a more extensive surgery. He will have to cut her open just in front of the ear and remove the part of the jaw that is all fibroses tissue and extra bone. It is his opinion that there will be no TMJ joint left underneath this mass so she will be left with an open joint or no TMJ joint on that side. They will then take part of the muscle just above the TMJ area from the skull and fold it under the skull, creating a space between the two bones to help prevent re fusion of the bones. They will also have to sever a muscle down on the lower jaw so that it won’t contract and pull the two pieces right back together creating the same problem. They will then attach a TMJ distractor. Essentially, this will be pins stuck in her skull and lower jaw coming out of her head with bars and a hinge so it will be able to move with the opening and closing of her mouth. Apparently, we will have to turn something on this contraption daily. The good news is she will be able to open her mouth immediately after surgery. The bad news is everything else. The distractor will be on for at least a month. When he told me I was thinking a year so a month sounded great! During this month she will still have to use the stretching appliance for her mouth and therapy.

Once it is determined that the space between the jaw and skull is stable she will go back in for surgery to have the distractor removed. She will then continue with the stretching and therapy for an undetermined amount of time. The doctor still thinks it is unlikely her jaw will ever grow and that she will probably need jaw distraction surgery when she is 5 or so. Of course, I always have hope that her body will adapt. I think once she is able to open and move the muscle and the whole area is functioning better her growth receptors in the lower jaw may kick in. She will also most likely need major orthodontics and final surgery as a young adult when she is done growing.

You can see in this photo how much smaller her jaw on the right is compared to the left. To me it actually looks like it has been growing still but bunching up instead of elongating like it should. I would think this would be from the restricted movement and the muscles binding everything in place. If you look closely at her teeth you can see the center line of the bottom two teeth are way over to her right side compared to the top teeth.

For now, we are glad Lucy is stable. Dr. B. told us we could take our time to decide on our path and get another opinion if we wanted. That is what we are doing. Right now I am trying to find someone else to get another opinion with. Please pray for wisdom and discernment for us as we go about this process. I know your prayers are working as I have much more peace about all of this compared to how I felt months ago when we got the diagnosis and initial recommendation of the rib graft. We are eternally grateful.

Today Lucy fell down our steps. For those of you that have been to our house you know this is not a good thing. Those are our actual steps pictured above!! I was in the shower which is positions slightly below the steps so I can always hear when a little one gets up from their nap and descends down the steps. This day I heard her start down the steps as usual and then a pause. I’ve learned that pauses are usually not good things to hear when listening to little footsteps on the stairs. I think all five kids have tumbled down these stairs to one degree or another and a pause usually proceeds the fall. After Lucy’s pause I heard the fall and jumped out as fast as possible grabbing a towel. By the time I made it out to my bedroom my oldest daughter Nadine was bringing her to me, crying and screaming. “Where are you hurt?” I say as I’m frantically looking for blood, knots, bruises. I ask her “What did you hit?” and I notice a tinge of blood coming out of her nose just as she answers “my nose”. There were no witnesses so we have to go on what she told us and all I got from her was she hit her nose. She is doing fine now but I’m beginning to wonder if she can be “Bubble Girl”. She seems to fall all the time. I think everything she has going on with her jaw may be affecting her balance, but now that I think about it she fell as a baby more than any of my other kids. Maybe her lack of balance is causing all of her other problems…