Month: July 2010

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…

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.