Lucy Mae

Part 1 HEAD:
Wow, where to start with this update. It has been a crazy couple of weeks on Wednesday July 7th Lucy fell and cracked her head open in the shower.

Surprisingly, this was all the bleeding there was. Only a smudge of blood on the towel. In my experience heads usually bleed like CRAZY! One explanation could be that right before her shower I had given her all of the therapeutic grade essential oils she takes internally, one of which is helichrysum. One of the benefits of helichrysum is that it works to balance the blood. This also is the oil we used religiously on location to help get rid of her blood clots after her infection a few years ago. When giving her the oils before her shower I accidentally gave her two drops instead of one…hmmm

After researching cuts, stitches etc. on the internet it was decided that she didn’t have any of the conditions needed for stitches, excessive bleeding, need for reduced scarring, gaping wound, so we bandaged it the best we could for the night and kept her head dry for a few days. It’s fine now.

Part 2 TEETH:
Saturday July 10th: This was a big one. Lucy fell head first into a concrete sidewalk. I was gone and Shanti had taken the kids to the river. They were venturing down one of the concrete bike paths and Lucy began to run several times and was told several times to stop. She ran and stumbled, was told to stop and immediately got up to run again, took a few steps and fell right on her front teeth, only one broke but it is pretty bad. When I got home I didn’t even notice it for 30 minutes but when I did it was such a shock I couldn’t control my tears. I know it is just a tooth but to me, at the time, it was her beautiful smile maimed. It is already changing, slowly, from her jaw not growing. I guess, this was just adding insult to injury, no pun intended!! Lucy and Miles my 5 year old happened to have a cleaning appointment the following week. My father in law examined the tooth and sure enough it is broken pretty bad. It goes up much further in the back and there is exposed nerve. He also smoothed it down as it was very sharp. We will wait to see if the tooth dies and then remove it. In the meantime, we are doing everything we can to salvage the tooth and keep it healthy.

I have a case study in a book about a woman who smashed her mouth, crushing the bone, moving the tooth out of alignment and turning it dark grey. She was told they needed to do a root canal to save the tooth. She decided to try rubbing several different essential oils on it first to see what happened. After two weeks of applying, wintergreen, thieves, peppermint, and cypress to her tooth it had moved back into place and turned back to it’s normal color. This is what we are trying. One more thing to add to my already full plate, but it will be worth it if we can save her teeth. Actually, the broken one has not changed in color at all and seems to be doing well. Unfortunately, the one next to it has turned grey. I am trying to be vigilant with the oils and it seems to change from dark grey to light gray/white from day to day. I have hope that we are helping it to heal!!

Part 3 PLUG:
With the tooth trauma, I took this opportunity to abruptly cure Lucy from her several year addiction to her plug (pacifier). I remember when she was born, shortly afterwards she began to cry, cry endlessly. Once I figured out her allergies and cut those foods out of my diet the crying lessened but she still cried and slept rarely. We were in a complete, utter exhaustive state. We pushed the plug on her like the corner drug dealer. She would have nothing to do with it. All she wanted to do was nurse, nurse and nurse. There were several months where I had to nurse her for over an hour before I could put her down to sleep. I bought every plug ever made. I even bought the ones they use in the hospital for premies. Nothing worked. I prayed she would take the plug so that we could get some sleep. I always had it with us and would offer it daily but she didn’t care one bit for it, until she had surgery and was in the hospital for a week at 16 months old. Be careful what you pray for. She became severely addicted. I’m grateful that she was able to use this to comfort herself in those times I wasn’t able to be with her, going into surgery, coming out of surgery, etc. but when we got home it was another story. Out of exhaustion we fell right in step and proceeded to give it to her at every whimper. We allowed her to use it at all times. Stress trauma, pain and suffering can lead you to make decisions you would never make normally. After things calmed down, Lucy’s PICC line came out, she was off of the blood thinner shots and our CPS case was closed I began to limit her use to the bed, car seat and doctor appointments. Then a year later it was reduced to bed and doctors appointments. She was getting much better at the doctors. Her fear was subsided and she began to not need it as much during appointments. Once we got her jaw diagnosis I began to tell her that when she had surgery she would have to stop the plug completely. I explained to her that sucking on her plug was not going to help with her therapy to make her mouth open wider. THEN the broken tooth. I immediately told her no plug. We quit it that day. What came to follow was something straight out of a heroine addict story. I’m not sure why I was surprised. Maybe it wasn’t so much surprised as completely unprepared. Every time the withdraw fits ensued “I want my plug, I’m so sad, it’s not fair!” I reminded her that I too was sad that she had disobeyed her dad and ran over and over until she fell and broke her tooth. She quit taking naps and quit going to bed at night. It slowly has gotten better but still not perfect…

Part 4 TOES:
One day, out of desperation, at “nap”, it became clear to me that she just might be able to go with out sleep FOEVER. It was bribe time. She had a new found fascination with ballet. She was doing ballet all over the house, she was doing ballet on the kneeler at mass, she called herself a ballerina, ballet was on her mind. I told her I would get her a ballet outfit, shoes, leotard, tutu…when she learned to go to sleep without her plug, she could have them. We went to buy them and came home at nap time. She went straight to bed and took her nap. When she woke up she came down and said “can I have my ballet stuff now, I took my nap”. We will see how long this lasts for.

I finally have some good news. It has been a crazy time getting to this point though. We were scheduled for a second opinion with a Dr. here in Ft. Worth on June 8th that happened to share an office with the surgeon who did Lucy’s first surgery. The office called me the day before to discuss insurance. Since Lucy had been there before they had her info in the system and could see that she had qualified for medicaid when we went to the hospital for the CT scan back in March. Apparently, Medicaid has different companies you can be signed up under and we were signed up under the worst one. On top of denying part of the CT scan, I’ve been told most doctors don’t accept Amerigroup anymore. So the office called me to inform me that they don’t accept Amerigroup…no big deal we will pay you cash. We are used to this as we have never had insurance and pay all of our medical bills up front. The office calls back an hour later to inform me that they got a call from corporate and they legally can not even see Lucy in their office or take our money because she is on Amerigroup. I burst into tears on the phone with this poor lady saying “You can’t take my money? My daughter needs to see this doctor!” She was as shocked as I was.

After getting through the grief that Lucy may not be able to see the best doctor for her because we were on government “aid” and trying to figure out if I should take the month needed to switch to a plan they do accept taking the risk that some other doctor we need to see might not accept this new plan, I decided to start the process to cancel the coverage. My grief passed and moved to anger at the ridiculousness of the situation and that people must go through this every day. People who don’t have the money to pay out of pocket or the knowledge to know they can do it a different way, suffer the consequences of not being allowed to weigh all the options and choose the right path for themselves or their child. I figure God has a reason He allowed this to happen. Perhaps personal experience in the “system” will help me to defend my small government ideals.

So, in the meantime, I scheduled an appointment with Dr. B in Dallas at the International Craniofacial Institute. Since we were canceling the Medicaid coverage we were able to be self-pay patients. We are blessed that for the time being we will be allowed to be “self-pay”. In the near future this may not be a legal option for anyone once this newly passed healthcare debacle is implemented.

On to the good news. Our appointment was last Wednesday. We met with the Dr. and informed him of all the details. He promptly said, he doesn’t agree with removing the jaw or doing the rib bone graft. He said this will not fix the problem and cause more problems. The real issue is the fibroses tissue. To deal with this Lucy needs to undergo extensive physical therapy. If she had the rib graft it is very likely that it will fibrosis right away and have the same issue. He said her joint is functional and has a good percentage of motion. We need to increase this percentage. Dr. Barcelo recommends for her age, since she would not be able to cooperate in extensive, painful physical therapy, to put her to sleep and inject a steroid to help break up the fibrosis and then manually stretch open her jaw while she is under. This will be a day procedure and she will go home with pain medication. The next step will be to under go physical therapy and use an OraStretch Press several times a day.

They will reevaluate her after 2-3 months of therapy to see if she may need to be put to sleep again for more manual stretching. Then we will wait until she is 5 or 6 and see if that side of her jaw is growing. If not, at that point she will need to have surgery to perform distraction osteogenesis (breaking the bone and separating with pins to encourage it to grow back together lengthening it).

She may need more orthodontics or surgery when she goes through a major growth spurt near the teen years as well. I am very hopeful that she may need nothing more that this first procedure. We have been very diligent in supporting her body with many natural supplements, specifically many that help to balance the bones, ligaments and muscles. She is a champ at taking anything asked of her. She calls one of the supplements we give her the “disgusting acidophilus” except she actually says “acilofilis”. Since she can’t swallow a pill we have to put several things in applesauce or yogurt. Regardless of the yuckiness of it she takes it without fussing!

Needless to say all of this was very relieving to hear. I’m not positive this is the route we will take. We need to pray about it and discern if we need to get another opinion before we make a final decision. In hindsight, I can see how the road blocks we encountered (MRI scheduling mix up that we ended up canceling, not being able to get into the Dr. in Ft. Worth, etc) were all part of God’s plan to lead us to this Dr., especially the MRI. That would have been a completely unnecessary risk for us to take, putting her to sleep for several hours just to take pictures, whereas this procedure to start the process of fixing the problem will probably be much less time under and we will be working towards an end.

Thanks again for all of your prayers and support. I hope that you will continue to pray for Lucy, us and all of the people involved in her care. I will update as soon as I have some more specifics on what we will do next.

Once again, thank you so much for your continued prayers. We are so grateful to be blessed with so many people who take their precious time to, not only, pray for us, but ask others to pray for us!! On the last update I said Lucy would be having her MRI on the 19th, which is tomorrow. Well, the hospital messed up again and had us scheduled for the 13th. They called me on the 12th to discuss anesthesia protocol, etc. I was quite shocked to learn of the scheduling mess up, they doubled checked and she was only down for the 13th, not the 19th. I had to cancel the appointment as we had things going on the next day, Shanti had to work, we didn’t have my mom lined up to help out, I was not prepared with the food you need when going into a fast etc. AND I was not emotionally prepared, for one week sure, but one day, no!

This appointment was set up by the TMJ specialist’s office, the only Dr. we have consulted with on this surgery. If you remember the orders were thoroughly messed up with her CT scan. This is one of two things: either God is trying to tell us to get a second opinion sooner rather than later or this is the best guy for the job and satan is trying to mess it up. Well, we have decided to seek another opinion before moving forward with a MRI. Because of Lucy’s inability to open her mouth the MRI is more complicated than with another child. They reassured me that they do nasal intubations regularly (almost daily) but because she can’t open her mouth they would have to have a crash cart in the room, just in case. Having weighed this, we decided it would be best to seek the second opinions first as the other doctors may see the MRI as an unnecessary step.

In the meantime, I see this as more time to pray for her healing. I know God designed the body so wonderfully. I have been praying that whatever miscommunication happened in her little body, to result in this extra bone/tissue growth, be resolved and that every nerve, cell and atom in her body have perfect communication.

We have also been blessed by a friend who told us about St. Charbel. He was a priest, monk and hermit that lived his life in the path of our Lord Jesus Christ, detaching himself greatly from this world. As a result of his devout service to our Lord, in the late 1800’s, after his death his body was incorrupt and lifelike for 65 years and exuded an oil, of which many miracles are attributed. For those of you that are not Catholic, we do not believe that St. Charbel performed these miracles himself, but that because of his extraordinary holiness and devotion to Jesus Christ, God preserved his body from decomposing and authored these miracles through St. Charbel’s intercession (fervent prayers) to draw more people closer to Him and the holiness each and everyone of us are called to. Also, when we “pray” to saints, since they are our dear friends in Christ, it is the same as me asking you to pray for me. Since we can’t physically speak to them we use the word pray to describe what we are doing. Our friend also gave us some of this oil and Lucy has me bless her with it daily. She has become very fond of St. Charbel and her face lights up when she speaks of him. She made me hang his holy card in her bed and she says he talks to her! Before I knew much about him, I didn’t even know he was a priest, she told me that he baptizes people. It’s things like this that make you realize how innocence helps us to stay connected to God and His saints. If only we all could remain that way throughout our lives.

At this point, I don’t know what will come next. Since canceling the appointment I have not had an opportune time to schedule any appointments with the other surgeons. I hope to have time to sit down and do this towards the end of this week. I hope that you will continue to pray for this whole situation and for God’s guidance in our discernment and Lucy’s healing, one way or another!!

After a long LONG wait the Dr. finally reviewed the results from the CT scan. It looks as though she does not have total boney ankylosis, she has some bone growth on the exterior of the jaw and fibrosis elsewhere. From the conversation with the doctor I am not exactly sure where everything is located though. Also, the images revealed that the TMJ ball joint is swollen and the ball socket is receding a bit towards the skull. The TMJ doctor wants to schedule a MRI to get a better image of the area so he will know how to proceed surgically. According to him he would do the same procedure (rib graft and all) regardless of boney vs. fibrosis ankylosis.

He didn’t seem too concerned about the possible infection (swollen joint) but I immediately scheduled an appointment with my naturopath. God, once again, provided as they had no appointments available for quite some time but just after they got my message on Monday 3/28 someone called and canceled for that Thursday 4/1.

Lucy is now being treated naturally for several things going on in her system, which I have full confidence in being able to take care of these infections until we can remedy her mouth. Her inability to open her mouth is causing an over inundation of bacteria on her system and whenever new pathogens are introduced (from nature, friends, kisses from mom, dad and siblings, grocery carts, etc.) her immune system is having a hard time keeping them fought off. Since she can’t open her mouth we cannot clean her teeth properly and she has developed some decay. Our mouths are usually one of the first lines of defense against bacteria and viruses but right now her mouth is part of the problem. We do our best to keep her mouth clean and keep her away from places that might introduce too many pathogens, but we can’t keep her in a bubble!! Most of you know that we use therapeutic grade essential oils. We have been utilizing these in maintaining her health. We use many oils on the location of her jaw, she takes some internally and we use a mouthwash and toothpaste with antibacterial, antiviral, anti fungal. etc. essential oils in them that help greatly.

I thank God for all of these natural things He has given us. I know that if we had not been consistently treating her with these things she would be in much worse shape than she is now. All of these natural things keeping her healthy allow us to proceed slowly weighing all of our options instead of having to make hasty decisions because of a medical emergency. Your prayers are also helping us to take everything one step at a time with much consideration.

As of today, the hospital does not have any openings for an MRI until May 19 (my grandmothers birthday, I know she is praying for a miracle!!). Until then we will continue to keep Lucy healthy through diet, natural remedies and hopefully sleep, if she cooperates, she has never been a great sleeper. We know that she must have some pain, constant or shooting we don’t know. In general, she is a normal little girl and people don’t notice any difference.

We have a few options for second opinions that seem straight from God. The first is a recommendation from a lady named Lucy and her surgeon just so happens to share an office with the doctor who did Lucy’s mastoidectomy. The second is a woman Shanti has known for a long time but never sees. She happened to have an appointment with Shanti’s dad (he’s a dentist) last week while Shanti was there helping out. He told her about Lucy and she just so happens to be friends with the wife of the surgeon in Dallas who separated the conjoined twins from Iran awhile back, they were conjoined at the skull. Did I mention his wife’s name is Lucy and she does cranial sacral therapy!!

Anyways, I’m sorry it has taken me so long to get this update out to you. It seems as if every time I have a chance to sit and write it I am exhausted and brain dead. I truly appreciate all of the prayers that are being offered for Lucy and our family. I know we could not get through this without them. The next update may not be for a month, unless we have some unexpected news or appointments before then. Thanks again and may God bless you for offering your time praying for us.

Thank you for all of your prayers. Lucy had her CT scan yesterday and everything went well, with the exception of continued confusion over the orders for the scan.

We planned to try the scan without anesthesia but needed to have her fast just in case. So, after a hour or so of waiting we were called back to the CT room to try without sedation. When we got in the room I began asking when they were going to start the IV for contrast. The tech thought I was talking about sedation and proceeded to tell me this was just a practice run and they don’t do IV’s in the CT room. Lucy vocalized a few times she was scared without fussing or crying, just matter of fact, “mom I’m scared”. She did great!! I talked to her about why she was scared and we got through it and she laid down on the table and got strapped in. We did the practice run after sitting for several minutes waiting with her completely still. Of course, when the table moved for the practice run she looked all around with her head. We explained that she couldn’t do this when they took the pics, etc.

Then the time came for the real run and the confusion over the orders came up. I had spoken with the Dr. and hospital the DAY before to confirm ALL orders so I would know what was going to be done so we would not have to do things twice. Well, the CT tech proceeded to tell me they had spoken with the Dr. and they didn’t need contrast, etc. This scenario frazzled me a bit and they don’t really give you much time to prepare the child/talk them through it before they say “OK lets start the REAL scan”. Unfortunately, Lucy moved her head slightly on the very end of the 20 second scan and it didn’t come out. The tech was nice enough to try one more time but she moved her head at the exact same point (when the table was coming back out of the machine, she looked back a bit at something behind her). So, we ended up having to do sedation. Everything went just right with this but I was very nervous because if something went wrong they would have to intubate. Since she can’t open her mouth this would be a more pressing issue. I could tell even the anesthesiologists were a bit concerned about this. They reassured me though, as they should. She is back to her normal self today, running around and bossing everyone in the house. This was a good introduction to the hospital again for when she will have to go back in for surgery!!

We won’t find out the results until the Dr.’s office gets them and we come back in for the consult. So now we wait.

First of all let me apologize for not updating you guys sooner.  We decided to take things one step at a time and shortly after that Lucy along with several of us got sick.  So, we have been focusing on getting everyone healthy before pursuing any further steps.  It seems as if that sickness has passed so I made the appointment for her CT scan for this coming Wednesday March 10th.  We are still praying for a significant improvement over her last x-ray.

Since I last wrote I have found out some new information.  First, the procedure the doctor explained to me, removing the jaw and replacing with a rib graft, seems to be the worst case scenario.  In my research I found out that the ankylosis can be true (bone) or false (fibrosis tissue).  We are praying that it is only fibrosis tissue as this would be possibly a less invasive procedure.  Also, I have found out that there are several different kinds of procedures that can be done to correct this, so we now have some questions to go on when we meet with the TMJ specialist with her CT scan results and get a second opinion.

Lucy is doing great considering all she is going through.  She was up all night last night with a stomach bug and  despite the normal discomfort of throwing up I’m sure it was especially hard for her because her mouth does not open enough to let things escape in a timely manner.  This morning she was complaining of a very sore throat.  It is incidents like this that make me eager to have her jaw corrected.  I still have some fears but God has been working them out.  I’m not sure they will completely go away as we are talking about my child going in for surgery with blind intubation on top of everything else.

Anyways, I can’t thank all of you enough for all of your prayers and support.  We continue to feel God’s grace upon us and know that whatever the outcome of the CT scan Wednesday we trust in God’s will and hope that we will be able to use everything for His greater glory.