A Catholic Life

Assembly of Canonical Orthodox Bishops of North and Central America - Record of Protest Against the Infringement of Religious Liberty by HHS

2012-02-02T19:18:00.000-05:00

Assembly of Canonical Orthodox Bishops of North and Central America - Record of Protest Against the Infringement of Religious Liberty by HHS

The Assembly of Canonical Orthodox Bishops of North and Central America, which is comprised of the 65 canonical Orthodox bishops in the United States, Canada and Mexico, join their voices with the United States Conference of Catholic Bishops and all those who adamantly protest the recent decision by the United States Department of Health and Human Services, and call upon all the Orthodox Christian faithful to contact their elected representatives today to voice their concern in the face of this threat to the sanctity of the Church’s conscience.

Shwachman-Diamond America Approves Additional Funding for the SDS registry

2012-02-02T14:09:00.002-05:00

The SDA board recently approved $7,000 of additional funding for the North American SDS registry. We received info on the registry and have paraphrased it below. For more information or complete details, please contact SDA.

The registry has identified more than 80 patients for the SDSR and has signed consent for more than 70, with data extraction and data entry in progress.

SDS registry projects for the upcoming year:

1) Continuing efforst to obtain medical records from enrolled patients.

2) Analyzing the data available thus far to define the clinical spectrum of presentation. The goal of the project is to improve diagnosis.

3) Analyzing the family history of patients with SDS to determine the clinical significance, if any, of being a carrier for the SBDS gene mutations.

4) Investigating the clinical spectrum and medical course of patients presenting with "clinically defined" SDS but who lack SBDS gene mutations. Also conducting studies to determine the pathophysiologic basis of disease in these patients.

Of note, these projects depend on increasing patient accrual over the coming year.

Just wanted to keep everyone up to date on what SDA has been doing.

Pattie Curran
President, SDA

I Am a Tomboy

2012-02-02T12:52:00.001-05:00

Imagine my shock when my boys told me I was a tomboy! I protested. Then they reminded me, "Mom, you were in the Army." Oh, yeah, I see your point. This conversation began because I was telling them how excited I am that our pigs will be arriving soon. I love dissection!

I have such fond memories of dissecting things in high school. I was fortunate to have biology I and Biology II (Medical Life Science). Through these courses, we dissected a worm, a fetal pig, a cat, a dog (it had been put to sleep and donated to the class) and a fetal horse. In college, we also dissected things and one of the experiments I remember most was done on a live turtle-- we poured digitalis and caffeine on his heart and recorded the effects. What's not exciting about these things? Matthew thinks he can use the "It will take me from my REAL school work" line to get out of participating in dissection. It won't work!

The boys think only tomboys like to dissect things. I disagree. I'm only PART tomboy. I balance it with all my cooking, baking and gardening, right? I wear skirts to Mass. I don't wear make-up often at all and I think that goes with embracing my natural feminine side.

The boys blood draws went well yesterday morning. After the last several required four sticks each, Joseph only needed one stick. We had to arrive in the morning for a special test that has to be frozen and arrive at the hypertension lab before noon. Sean is on day 10 of being sick, ran a fever last night, but is better on the fever front today. I'm hoping to avoid a visit to the doctor! Maybe the pigs will help him feel better. ~evil laugh~

Creative Minority Report: This Video Will Make Your Catholic Blood Boil

2012-02-02T11:02:00.000-05:00

Creative Minority Report: This Video Will Make Your Catholic Blood Boil

See the BHO administration defend its decision to force the Catholic Church to cover contraception and abortion drugs in the HHS mandate.

Komen Still Doesn't Acknowledge Abortion-Breast Cancer Link | LifeNews.com

2012-02-01T14:35:00.000-05:00

Komen Still Doesn't Acknowledge Abortion-Breast Cancer Link | LifeNews.com

Been saying this all morning! SGK cut funding to PP because PP is under federal investigation. It still doesn't admit the ABC link. A woman who has an abortion before her first fill term pregnancy increases her risk of breast cancer by 50-90% depending on family history. For statistics and medical articles about the ABC link, see the Breast Cancer Prevention Institute.

World of Coke and Pokes

2012-02-01T00:20:00.003-05:00

After poking 4 times, she called in another nurse

The week before last--searching for another spot

We don't always do fun things on our medical trips. This last one, we decided to visit the World of Coke afterward. testing and GA Tech tour. We decided to visit the Coke museum partly because we'd had two weeks of medical "pokies" before and ended up with more! I caved! Sure, they are just needle sticks, but when you are a kid like Joseph who never gets a line in or blood drawn on the first poke, life can seem a bit unfair. We had several four and five pokie days. I still call them pokies. When Joseph was little, that is what he called them and the name stuck. We try to tell the people drawing blood, but they never believe us. These ladies told Joseph that he was going to leak when he drank something on this particular day (above).

Sean is an easy stick. Got him the first try.

The lobby of one medical plaza in Atlanta had some great art work. After our visit, Joseph and I stared at the blown glass art for quite a while. I actually laughed when I realized we'd been having a conversation about the art....that doesn't happen with a 14 year old very often....conversations about art.

The pokies were not fun. I tried to tell the ladies in Atlanta, but was told she could get blood from a turnip. I believe she was humbled by the 4th stick. The glass art shown here is amazing-- we tried to see if we could find any sort of pattern in the rainbow piece. Do you see a pattern? The pear is the most unique lighting fixture I have ever seen. It was fun to look at.

First try

Second try

Third try

Between tries

He looks a bit like Darth Vader during this CPET testing

At the Varsity eating lunch--super cheap prices!

my favorite art at the World of Coke--love this mixed media work


4th attempt and success


Got Sean on the first stick

The Top 10 Apple iPod Touch Apps for English and Language Arts Teachers

2012-01-31T10:59:00.000-05:00

The Top 10 Apple iPod Touch Apps for English and Language Arts Teachers

Check out these free apps! We already have a few of them, but some are apps I had not seen or heard about. Fun stuff!

Picture of the Day

2012-01-31T08:56:00.000-05:00

Letter Raed in Many Catholic Churches Yesterday

2012-01-31T00:35:00.000-05:00

It wasn't read in our church, but I've heard from many friends who said itvwasvread, or portions were read in their churches. A few even commented that their homily was on the same subject.
We need to pray and fast. Obama must be stopped.

Judge Stops Obama Admin From Silencing Pro-Life Activist | LifeNews.com

2012-01-30T23:14:00.000-05:00

Judge Stops Obama Admin From Silencing Pro-Life Activist | LifeNews.com

Obama keeps losing in court.......you'd think being a lawyer and teaching constitutional law, he might be a better judge of things.

Obama and the Catholic vote - TheHill.com

2012-01-30T22:17:00.000-05:00

Obama and the Catholic vote - TheHill.com

I did not vote for Obama. I'm pretty shocked that Obama is attacking the Catholic Church in an elections year, but it might pull Catholics together in opposition to Obama, which, in my opinion, is a good thing. Obama needs to be defeated.

Let the Quiet Children Come to Me?

2012-01-30T12:16:00.002-05:00

I often wonder if "quiet" is a word many Catholics insert into Jesus' words when He says, "Let the children come to me." He didn't qualify that statement with "quiet", "well-behaved" or "mute". Our parish instituted a new policy last year sometime. Announcements about disruptive children being brought out were being made every week along with announcements about the "training room". We eventually began a nursery at one Mass. Note: this is not a teaching of the Catholic Church, it is a policy of our local parish. One I hope will change. Here is a good article on the subject: For Crying Out Loud

Not long after the policy went into effect, the priest asked a woman to take her child out during the homily. I was shocked, as the child was not being noisy. He was moving around a bit, sure, but 3 year olds do that. I complained. Then, the policy changed to making awkward pauses during the Mass for any noise or disruption. It has evolved into an atmosphere of complete intolerance for any noise, good or bad - from children. Adults talking during Mass goes without any punishment at all. I call the pauses and the asking people to leave Mass punishments.

Yesterday, this policy escalated into a new level of intolerance. Not only was Mass paused, but several parishioners, including an adult parishioner serving up on the altar, stared down a family whose baby cooed, babbled and made a few grunting noises. This baby was not crying. I was sitting directly behind this family with their precious children. Two well behaved toddlers and a baby in a car carrier. Really? A baby coos and people feel it is okay to turn their heads and stare them down? I'd never seen this family at Mass before and I hope they were not scared away. I was shocked by their actions and found it ironic that the man on the altar and one other parishioner staring had often disturbed me and my family with their conversations during the homily and even the Consecration!

I am opposed to cry rooms, training rooms and nurseries. We do not raise Catholic children by keeping them out of the church. We raise Catholic children by having them celebrate the Mass with us in the actual church and teaching them proper behavior and reverence.

My letter to the parish council (I just emailed it to them all):

Dear Parish Council,

The quiet baby policy has now escalated to an unacceptable level of intolerance. I’ve addressed each of these issues with Father XXX in the past, and have decided that it is best to inform the council of my thoughts regarding this matter. I find it quite ironic that those who stare down families whose babies coo or babble are often the ones who have disturbed me and my family with their endless chatter during Mass (even during the homily and Consecration!). I suggest adding announcements for restless, talkative adults. Perhaps suggest that the training room is there for them, as well.

Yesterday, there was a family directly in front of me with a baby and two young sons. Very well behaved young sons, I might add. The baby DID NOT cry during Mass. They baby cooed and babbled. I was embarrassed by the level of intolerance shown by my fellow parishioners, including one adult male serving up on the altar. At one point, the man on the altar stared at this family for at least one entire minute. I was horrified—he was standing sideways and adjusted his head so as to give them the “evil eye” when all their baby was doing was making a few coos and babbles.

My husband and I have already decided we would no longer attend Mass at this parish if we have any more children. No matter how wonderful, generous or brilliant the other parishioners are, they can never make up for the torment, embarrassment and torture parents must go through when their baby is cooing and babbling. A crying child seems to be an unforgivable sin. If we are truly a pro-life people, we would be filled with joy when we heard the voices of children. Jesus said, “Let the children come to me.” He didn’t qualify that statement with “quiet”, “well-behaved” or “mute”. Perhaps, the noise of children are the prayers God enjoys most.

Crying babies are a completely different matter, and not the point of my letter. We do not agree with cry rooms, training rooms or nurseries. We do not raise Catholic children by keeping them out of the church. We raise Catholic children by having them celebrate the Mass with us in the actual church and teaching them proper behavior and reverence. Children are not perfect, just as adults are not perfect. I personally am more irritated by adults who talk during Mass than any child who babbles or even cries. If you are going to punish families with pausing the Mass, evil looks and announcements, you need to treat the adult offenders accordingly. I am utterly disgusted by the treatment this precious family received on Sunday. I’ve not liked the policy from the very beginning, have voiced my opinion on the matter and believe, we, as a parish, have finally crossed the line.

One last note—while I do not care about the change in Mass times, I find it quite ironic that you expect parents to make their children behave inside the church, but do not require it outside the church. Isn’t is a bit ridiculous to be changing the Mass times when all that would be required would be to make parents be responsible for their own children? How about a few announcements about that?

If interested, here is a link to an article called “For Crying Out Loud” http://www.patheos.com/blogs/deaconsbench/2012/01/for-crying-out-loud-a-pastors-message-to-parents/

Pattie Curran

Quote of the Day

2012-01-29T10:14:00.000-05:00

As I head to Mass, I am going to reflect upon this quote (below my ramblings), pray for Obama and his administration, pray for the Supreme Court to reach the proper ruling on this attack of religious freedom and pray for our nation. I believe our nation is headed in the wrong direction and we need to pray, pray, pray and vote pro-life and pro-religious freedom (i.e. not vote for Obama). These attacks on religious freedoms cannot stand. The last attack by the Obama administration was tossed out by a unanimous (that's all 9 justices) decision of the Supreme Court. Obama and his administration wanted to force churches to ordain men and women-- the Supreme Court stopped him and upheld religious freedom.

"The Catholic Church defends religious liberty, including freedom of conscience, for everyone. The Amish do not carry health insurance. The government respects their principles. Christian Scientists want to heal by prayer alone, and the new health-care reform law respects that. Quakers and others object to killing even in wartime, and the government respects that principle for conscientious objectors."

"By its decision, the Obama administration has failed to show the same respect for the consciences of Catholics and others who object to treating pregnancy as a disease. This latest erosion of our first freedom should make all Americans pause. When the government tampers with a freedom so fundamental to the life of our nation, one shudders to think what lies ahead."

- Cardinal-Elect Dolan of NY

Atlanta

2012-01-28T23:59:00.000-05:00

God has a sense of humor. We had another adventure of epic proportions. On the way to Atlanta, we ended up with a flat tire. In the scheme of life, a flat tire really isn't a big deal, just a minor pain. We were able to meet with friends in South Carolina in spite of the flat tire. We just met them later than expected! Sean ended up with a low grade fever and a sore throat Tuesday night, but it seems to be better today.

The appointment went well. We're special and interesting. Though I wish we were not interesting to a doctor who only sees interesting patients, if you know what I mean. ~smile~ He asked us to participate in his research study. While the appointment was only for Joseph, Sean and I also donated blood for his studies. Dr. S is part of the Foundation for Mitochondrial Medicine. It is a wonderful foundation that only supports research for finding a cure and new treatments.

Joseph had met testing and then we met with Dr. S. I think it went well. Not sure we learned anything new, but we will have to see about going to cardiology for their blood pressure issues. He doesn't think they are part of mito and feels we should be careful about assuming every symptom is part of Mito. We discussed NAA and what it means, he wants to think about it some more. He says it confirms the mito, but is not a specific finding to mito, just like all the other doctors said it was. The best news was that, because Joseph doesn't have MELAS or Leigh's disease, he doesn't have an increased risk of stroke because of the NAA finding.

We enjoyed our visit to Georgia Tech and the World of Coca-Cola. I'll try to post pictures from these two things later. We're trying to recover from the trip and get ready for a week of work ahead!

Blank Note

2012-01-28T23:45:00.000-05:00

Threw this together tonight:

Unity KOM Sketch Challenge

2012-01-28T22:30:00.000-05:00

I made this for the January KOM Challenge at Unity. Another Mito Awareness card.

The Pope and Bishops Speak about the Conscience Laws (or lack thereof)

2012-01-28T16:41:00.000-05:00

What the Holy Father and others are saying about conscience protections

The Obama Administration has opened another can of worms. They failed to realize that Catholic American Patriots will not stand by and allow a tyrannical government to attack our Catholic Faith. The Pope spoke the day before the ruling by HHS to force the Catholic Church to cover birth control and abortion drugs. Archbishop Dolan also had a great response to the HHS ruling. Excerpts can be seen at the above link.

I am willing to defend my faith-- with my life. America was founded by the blood of patriots who realized that religious freedom must be protected.

What Does it Say......

2012-01-24T13:18:00.000-05:00

When a US President is a lawyer and taught Constitutional law and his agenda of religious persecution is unanimously rejected by all 9 Supreme Court Justices? Yes, there is something fundamentally wrong our colleges and universities. It says that he is part of the problem.

I'm just a state college graduate. No Ivy League for me. Yet, I can read the First Amendment and it seems clear to me: Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

Mr. Obama, you already lost on trying to force churches to ordain men and women. The court unanimously said you were WRONG. On the issue of forcing the Catholic Church to cover and dispense birth control and abortion drugs, even the Washington Post is on our side. That really says a lot -- Once again you are wrong and will receive a fail. Obamacare is a fail. It needs to be repealed. Those of us on the right kept telling people this would happen, that the government would mandate and dictate our freedoms away once Obamacare passed.

God is on our side, Obama. God is bigger than the Obama Administration.

Obama Picks Fight with Catholics

Live, Laugh, Love

2012-01-23T23:16:00.000-05:00

This is what I've been working on today:

I found this sketch design on-line at Sweet Shop:

Source: sweetstopsketches.blogspot.com via Pattie on Pinterest

March for Life

2012-01-23T18:12:00.000-05:00

A news report from yesterday reports 400,000 marchers last year. EWTN reports that 500,00 showed up this year. This video is a wonderful story-- an abortion survivor tells her story. She says she is living proof that it isn't just a choice.

Occupy Washington, DC - March for Life

2012-01-23T13:58:00.000-05:00

The Obama Administration's recent decision wants to force the Catholic Church to also cover abortion drugs (the day after pill, etc) in its insurance plans and at its hospitals. On this anniversary of Roe v Wade, let us commit to protect all life and defend the Constitutional values this country was founded upon. Without Life, there can be NO liberty or pursuit of happiness.

I'm proud of my oldest son, who will soon be 18. He and a friend took a bus to Washington, DC for the March for life. Here is a picture from this past year, that I just love. The heart has "choose" written all over the inside.He, and many, many others are Occupying Washington, DC today and defending life! God bless

Work in Progress

2012-01-21T23:21:00.000-05:00

I found this sketch challenge at the Sweet Shop blog (click on image to visit the blog) and I want to make a card using the sketch. If you check out their blog, you'll see several cute examples with this sketch design. I hope I can come up with something as cute!

Source: sweetstopsketches.blogspot.com via Pattie on Pinterest

All Things Considered

2012-01-21T18:23:00.001-05:00

I've never been angry with a president of the United States and his Administration. Never. There is a first time for everything. I was in the military and can say that I was really not that fond of Clinton. I remember living in California during the Carter years, the long gas lines.....and I never felt anger.

I suppose, this is really the first time I have felt religious persecution. I am Catholic and the Obama Administration is blatantly attacking the Catholic Church. They are blatantly violating our First Amendment Rights. Forcing the Catholic Church to cover birth control, something that it finds to be morally objectionable, is against the Constitution. Oh, wait, we're supposed to be happy because he is giving the Church a year to comply. Read one article here: BHO Birth Control

What is next? Will the Amish be forced to buy into the new plan and pay social security? Will the Quakers be forced to sign up for the selective service draft? The BHO administration defines a tax exempt religious organization as one whose employees and clients are 100% that religion. So, the Catholic Church helps the poor-- no matter their religion. So will they force the Catholic Church to shut down its hospitals and stop caring for the poor because they service people of all faiths, creeds, sexual orientation, race or gender?

Time will tell. All things considered, the 2012 election is a battle and this picture sums up how I feel:

Newt Blasts John King

2012-01-20T13:09:00.000-05:00

Newt did an excellent job last night. He defended everyone on the stage. The media bias is sickening. If he were a Democrat, they wouldn't be asking the questions, saying that it was his personal life. I don't condone Newts sins, but at the same time, he has confessed (he has said he has asked God for forgiveness and I assume he means in confession since he is Catholic) and says he is a changed man. I've had many discussions with people about Newt. St. Paul was a murderer, St. Augustine had children out of wedlock..... even our founding fathers had their transgressions. I am not in the business of judging a man's conversion to God or his heart.

What Ron Paul Wants

2012-01-20T12:46:00.000-05:00

I read a great article in the WSJ today on What Ron Paul Wants. I agree with the article. Ron Paul makes me nervous. Not only does his pro-life record match the 50% of Harry Reid's, I think he uses "states' rights" as a cop out.

What about the Mann Act that prohibits crossing state lines selling sex? Is Mr. Paul fighting to get that repealed?If Mr. Paul is pro-life, hew would support a Constitutional Amendment ban abortion. Without Life, liberty and the pursuit of happiness are not possible. Our founding fathers were clear that we all had the unalienable right to LIFE, liberty and the pursuit of happiness.

States' rights is a valid argument, but we must realize that we live in an America where States' Rights have been watered down and where a Federal Government has often overstepped its bounds. We do need to work on giving rights back to the states, but we also need to protect the number one unalienable right, too. The right to life. The Roe v Wade decision made abortion a federal issue and now we must work to defend life at the state AND federal level.

Work is Good

2012-01-17T13:05:00.002-05:00

Preach it brother, Newt! 99 weeks is an associate degree...and I love his simple "no" answer to Juan!

Catholic Church TV Ad

2012-01-17T09:48:00.002-05:00

One of my favorite commercials!

The Most Blessed Sacrament

2012-01-17T09:36:00.001-05:00

Dysautonomia

2012-01-14T12:31:00.000-05:00

Patients with mitochondrial disease can have something called dysautonomia. Dysautonomia is a malfunction of the autonomic nervous system. In mitochondrial disease, the mitochondria (power houses) are affected in the cells of the body. Mitochondria produce the energy the body needs to function. In a person with mitochondrial disease, they can have good energy days and bad energy days, depending on how their mitochondria are functioning on that particular day. On a bad energy day, the body may not have enough energy to regulate the autonomic nervous system, causing blood pressure problems (high or low), temperature problems, irregular heartbeat or other symptoms.

S&J have problems regulating blood pressure. many days, they have high blood pressure. At first, it was just an odd finding and I thought it was strange that so many nurses and doctors asked me about their high blood pressure. Many times, the nurses repeat the blood pressure to see if they can get a lower number. Sometimes these high blood pressures will last for several days (I've had to chart) and then they will have a normal blood pressure day, only to be followed by random days of highs.

Today, I received the noes from J's endocrinology appointment last month and hated seeing that his BP was high and the doctor noted that it "suggests stage I hypertension". Because his BP varies and can be normal for a few days before it is high for another few days, he can't have blood pressure medication. If we did that, on his good days, it would lower his blood pressure too much. We've been to several specialists because the boys both have repeat high blood pressures, and so far, other than calling it dysautonomia, there isn't much we can do.

After reading the notes, I decided it would be good to share dysautonomia links on my blog.

Dysautonomia Cleveland Clinic

Dysautonomia MitoAction

Neurology Fun

2012-01-13T19:20:00.000-05:00

Yesterday was an hysterical morning. The doctor talked to me for 5 minutes about the spelling of Shwachman after he asked ME about its spelling. Seriously. He asked, I told him, then he went on about how he sees it spelled different ways, with a c and without and I assured him it was sH with no C after the H. He asked me what was going on in their marrow—I explained their myelodysplasia (mild) and he said, “We know that isn’t Mito related”.

He asked me what I did for a living and then praised me for my pronunciation of medical terms. Told me how complex the boys are (shocking to hear, really?). He also thought it was great that the boys could pronounce the medical terms and said they must get that from me. He’d asked Joseph what he knew about his diseases and J said, “Well, I probably know more about Shwachman-Diamond Syndrome ….” Told us all that we seem to be coping well (only in public ~giggle, giggle~). Must be a new thing in medicine—to assure the patient and family they are coping!? Either that, or they really are complex and I’m oblivious and it comes across as if I have great coping skills.

He pulled up the MRI/MRS.. He pointed at the NAA and said, “This is very low” and then pointed up higher on the screen and said, “This is where it should be”. Then went to another one of the graphs (They tested NAA in several areas of the brain) and did the same thing. J’s NAA is apparently significantly low. He said he wasn’t sure what it means. He knows Dr. Shoffner and feels like he really is the one who would know more about these findings. He is going to a neurology meeting at the end of the month where they discuss MRS findings and said he’d bring Joseph’s case up at the meeting.

He asked the boys if they had any questions (this is HYSTERICAL). Sean did not. Joseph, however, asked, “Well, I was going to ask you about NAA and what it means, but you said you weren’t sure.” The look on the doctor’s face was priceless! He then went into detail and explained it to Joseph. It means what everyone else says it means. Neurons have died off, there are too few neurons, etc…. he tiptoed around “cell death”, and then asked Joseph if he was worried about this.

Last funny thing: Sean had no reflexes (knee) and the doctor tried and tried. Had him holding his hands in the air while he did it to see if he could get some response. He said it was unusual and “curious” then looked at me and asked, “Has anyone ever said he doesn’t have any reflexes or mentioned anything about myopathy to you?” (I was thinking, “HELLO moron, mitochondrial disease IS a myopathy.”)

Almost 3 hours of complete joy. (note sarcasm) At least we have neurology here now. He knows all our neurology docs in Cincy, too.. so that is a plus.

From Pearl harbor to Hiroshima

2012-01-11T11:11:00.000-05:00

I love books! As I am fond of telling people, my husband doesn't worry if I tell him I am going shopping for clothes, but panics if I tell him I am going to the book store. Interactive books are even better. From Pearl Harbor to Hiroshima: The War in the Pacific is an excellent book for kids (and adults!). We've had fun not only reading the pages, but pulling out the replicas of original telegrams and even the notes of President Roosevelt's address to Congress.

My youngest is doing a research paper on Pearl Harbor this year, so we purchased this book for his studies. I really like how it is a simplified version of each campaign in the Pacific, setting up very nicely how Japan came to attack the United States at Pearl Harbor and finishing with each of the battles in the Pacific.

My First Lemon Blossom!

2012-01-10T12:35:00.000-05:00

I've had my lemon tree for almost a complete year and I am so happy to see my first lemon blossom! This is a Meyer lemon tree and I can't wait to taste the fruit.

I love lemons, can you tell? If you want to know more about lemons, I have info on my cooking blog- www.pattieskitchen.blogspot.com

Geaux Tigers!

2012-01-10T11:13:00.001-05:00

This is what I found when I walked past my oldest son's room this morning. The shirts he has not washed all season long:

I wondered, for a moment, "Is he throwing them away or going to put them in the wash?" He's worn these shirts for every game this Season and wouldn't let me wash them. He's learned that lucky charms don't work. Even with the defeat at the National Championship, LSU still had a great season. 13-1 is nothing to scoff at. They were undefeated in the conference, won the SEC championship and only lost one game this season. Like Les said in this video interview, "They accomplished a lot this season." It hurts to go out the way they did in the last contest, but over all-- it was an amazing season, Tigers. Les' post game interview

Questions that Should Never [have to be] be Asked

2012-01-10T11:06:00.000-05:00

I would be perfectly happy never having to spend any time in the medical world. My "perfect" life would include absolutely no time spent at doctors or hospitals. It would also be void of learning any medical terms. But alas, I don't live in that elusive land called perfect. Reality can be such a drag sometimes, can't it?

Not to say that my children have the worst medical problems on the planet, mind you, but I'd just like to be free of the issues they do have. I think of my kids as being mildly affected, and thus, when I am reminded of certain things, I am knocked off of my little white horse (on an ever so cute merry-go-round). Picture this: Me. Hands up, flailing around in the air as I run down the street screaming, "NOooooo this isn't real!" I don't REALLY do that, of course, but I can picture myself doing it one day! ~laughter~ It seems surreal that my kids have ANYTHING going on. They look and act like normal children. It truly boggles my mind.

I'd put off gathering questions for our upcoming appointments until after the start of the new year. I recently sent an email to one of the doctors to make sure I had all the questions. When the doctor replied, there was an added question: "would ask if we are at increased risk of stroke". I wasn't ready for that. I quickly did a search and there were several medical articles that popped up. I'm not worried or panicked at the moment. I'm going to wait and see what neurology says this week and what the doctor in ATL says. I'm just thinking there are some questions that parents should never have to ask. At the end of the day, God is in control.

Visit to GA Tech Scheduled

2012-01-07T14:17:00.000-05:00

We've scheduled our visit to GA Tech the day after J's appointment in Atlanta. Here's hoping I'm not too mentally drained after the appointment. I wonder if it is appropriate to ask them how many times they play LSU in a 4 year period? You know, just to see the looks on their faces. I also wonder if they remember students who were accepted, assigned a dorm and ended up going to another university? I sure hope not. Hubby got accepted and at the last minute decided to go somewhere else. :0)

I think I might be more excited about visiting the campus than the boys! We're planning on visiting more colleges this spring and summer. I think it will be fun. My parents never visited any colleges with me. Maybe that is why this excites me so much!

18 Days to Go

2012-01-06T14:31:00.000-05:00

Eighteen days and we head to Atlanta to see Dr. S. It has been two and a half years since we've been back to see him. It seems like an eternity since Joseph had his muscle biopsy and Mitochondrial Disease was confirmed.We haven't been sitting around, that is for sure!

I waited until January 1st to start compiling my questions for Dr. S. Hoping that he has answers our Mito doctor doesn't. Well, I can't say that our Mito doctor didn't answer the questions or doesn't know, I'm not satisfied with his answer to my questions about J's abnormal brain MRI. "It isn't classic mito, but it confirms mito," isn't enough for me. I'm not holding my breath that our neurology appointments next week will yield any more of an answer than that. This is why we decided to go back to the leading researcher and leading Mito specialist in the world. He no longer accepts our insurance, so we will pay out of pocket, but it is well worth it. Hubby and I have discussed this at length. Being able to sit in the room with a doctor we feel could shed light on the MRI results and all the questions we have is more than worth the fee he charges, the cost of travel and hotel. Our pediatrician agrees and even gave me a few questions to ask.

I waited until after the new year to make my list, because, quite frankly, focusing on making a list of questions I have regarding my son's abnormal brain MRI isn't a pleasant task. Oh sure, I realize he is doing well in the scheme of things. This finding certainly explains a lot of the things we and doctors have noticed. I wish I could file the results away and not have to dig it up or discuss it, but I do. Facing the Mito monster isn't fun, but we must face it, we must take control of it so that we can ensure our boys live normal, healthy lives... or at least lives that have minimal impact from Mitochondrial Disease and Shwachman-Diamond Syndrome. We refuse to allow these diseases to define who they are!

We've managed to get lots of school work done this week and now it is time for me to work on the medical front for a bit. God is good and continues to bless us abundantly.

The Latest in Politics

2012-01-06T13:46:00.000-05:00

Santorum won Iowa. I consider it a win. If Romney, who has been campaigning for President for 5 plus years can't pull off winning by more than 8 votes, it is a win for Santorum. Now that he did so well in Iowa, the attacks have begun. Santorum's Catholicism Attacked is an article I read this morning. As I read it, I thought, "Of course they are going to attack his Catholicism." They won't attack any other religion, but they WILL attack Catholicism" Where are the people attacking Romney and Huntsman's Mormonism?

McCain endorsed Romney the other night and we had a good laugh. I'm not sure that helps Romney. McCain attacked Romney's flip-flopping on many things, but was particularly hard on his pro-choice-pro-life flip-flopping. I had to wonder why McCain didn't endorse a candidate with pro-life views, like Santorum or Newt. Oh, that's right, he is a moderate, so of course he'd endorse the MA moderate in the race. In my opinion, Romney is a liberal. MA conservative = liberal in my book.

I'd love to see a Gingrich/Santorum ticket. I like them both. Romney's dirty politics and negative ads turn me off. His not being a true conservative turn me off. I'm hoping the Republican establishment doesn't nominate him just because he is an establishment Republican that they feel has the best chance to win. There are many of us out here who believe the only way to beat Obama in the next election is to run a true conservative against him.

Elements, moles and equations, oh MY!

2012-01-05T19:51:00.000-05:00

We've been working on Chemistry with fervor the last few days. It has been nice having time away from doctor's visits! We can put forth 100% of our energy toward school, well, after everyone got over the cold they shared, they have put forth about 95% effort into school! ~smile~

My favorite Chemistry curriculum is Friendly Chemistry, in case you're just dying to know. We are not using it in high school, but used it in middle school as a foundation for high school chemistry. It could certainly be used by high school students, though. It covers the topics very well and make it very easy to understand the concepts. In fact, we used it as a reference a few times the last few days. We also like the videos at Khan Academy - check them out! They are free. Their videos cover topics in all school subjects and we've found the biology and chemistry tutorial videos to be quite helpful. Of course, we love our chemistry set, too.

Yesterday, we were going over Avogadro's number and figuring out problems using it and I kept thinking of Avocados. The names sounds similar. I couldn't help it. Today, we balanced more equations than I care to admit, just to be sure the oldest truly understood the concept. I'll be dreaming of equations in my sleep. Which brings me to my next point.

Each child is different. My two youngest seem to remember chemistry from middle school, while my oldest seems to have dumped it all from his memory! How can it be that the two children in my house NOT taking chemistry are yelling out the answers and the one who IS currently enrolled in chemistry sits with a blank stare? Followed by one of the other two saying, "Dude! Mom has gone over this with us every year since we were in fifth grade!" I just have to laugh. Ask my oldest about politics, the US Presidents, the Catholic faith or the NFL and he seems to remember everything. He seems to do well in the things that interest him. Isn't that true for us all to some degree?

We'll wake up tomorrow, say a prayer and hope he's retained enough to pass the test! ~smile~ I'm sure he'll do just fine. I know he can balance equations!

Cupid's Facebook Page

2012-01-03T11:31:00.000-05:00

My youngest son got a BIG idea from a friend. He decided to create a page on Facebook for Cupid. I told him that it was okay as long as he was sure to watch his grammar! He says Valentine is jealous and needs her own page, too. Right. I'm using the creation of a page for Valentine as an incentive to finish his school work today.

It really is stupid how cute Cupid is. I posted a badge to the left (scroll down) and you'll see she isn't just an ordinary cat. It might be fun to imagine what life is like through her eyes. An experiment in English. Maybe this project will help my youngest gain command over the English language.... or, perhaps, I'll escape reality and help him out.

Saint Companion for 2012

2012-01-02T19:09:00.000-05:00

A friend of mine has been picking a saint companion for the last few years, and I decided to give it a try. What is a saint companion? A saint companion is a saint you pick at the beginning of the year and journey with throughout the year -- you grow in faith as you learn about your chosen saint. You also ask this saint to help you and to pray for you throughout the year. Here is a saint generator you might like to give a whirl: Saint's Name Generator

My friend picked a saint for me. Bl. Mother Teresa will be my companion for 2012. I really like this idea and can't wait to learn more about one of my favorite people. I'm betting Mother Teresa will be able to help me in many areas of my life!

Blessed Oils

2012-01-01T20:40:00.000-05:00

Until this afternoon after Mass, I had never really given much thought to blessed oil and all the rules surrounding its use. I knew blessed oil was different than Holy Oils and that lay Catholics cannot anoint people. Now I know the rest of the story!

We've used St. Joseph's oil in the past (oil that burns in the lamp under the statue of St. Joseph in St. Joseph's Oratory in Montreal) and blessed oil that is in our wedding crucifix. Hubby's dad was healed through the intercession of Bl. Brother Andre and this has always given us a special affection for Bl. Brother Andre. His parents brought oil back for us on their last trip to Montreal many, many years ago.

St. Joseph's oil was special to us, too. We passed along what we had left about 3 years ago to a lady who was battling cancer. I remember using the St. Joseph's oil when we lost our fourth pregnancy. Of course, the night before, we did not know the baby was dead. We prayed the rosary when I started having "complications" and I remember Chris getting out the St. Joseph's Oil and blessing me with it as he prayed over me. We continued to pray and hope for the best. Followed doctor's orders and the next day, we found Thomas' heart was no longer beating. They induced labor and he was given a conditional baptism by the pathologist with the Holy Water I brought from home. She used the prayer from my Mother's manual and everything (Our priest at the time refused to come out to the hospital). I'll never forget her tears and her hugging us after she'd given him a conditional baptism. I really think the blessed oil, the Holy Water and all of our sacramentals gave us blessings we needed to get through those long days.

Last year, a friend gave me some scented blessing oil that had not been blessed. It smells like church because it is Frankincense and Myrrh scented. Absolutely lovely. Or yummy, both words describe it well. This oil sat by my door for at least a year, until today because I am so forgetful.

After Mass, I asked Father to bless the oil and he looked perplexed as he asked me, "What is it?" I said, "Scented oil for blessing." I forget exactly what he said, but he didn't want to bless it. He mentioned something about people being confused between a blessing and anointing of the sick. I asked him if it was wrong to bless someone with oil and told him my boys know the difference between the Anointing of the Sick and a blessing. I was confused by his response because we'd blessed our children and each other with oil before. Certainly not a common practice, but we'd done it at certain "special" times. I started to walk away and he had second thoughts, I guess, because he grabbed my hand and blessed the oil.

This exchange made me research things. This was a policy I came across that made me feel much better. (I couldn't find one specific to our diocese online):

POLICY ON THE USE OF BLESSED OILS

No permission is necessary for the private use of blessed oil by individuals to bless themselves or members of their families.

The faculty is granted to pastors and priest-chaplains to give permission for lay ministers to use blessed oil for ministry to the sick in their parish or institution.

When blessed oil is used in the ministry of healing care must be taken to avoid any confusion with the sacrament of the anointing of the sick, which may be celebrated only by a priest. The minister should always make it clear that the blessing is in no way regarded as the sacrament of the sick. A lay minister may not perform anointings either with the oil of the sick or with any unblessed oil.

Blessed oil, used as a sacramental, must be blessed by a priest or deacon using a distinct formula of blessing (Book of Blessings, chapter 59).

A prayer must always accompany the application of the blessed oil since sacramentals achieve their effects through the Church’s intercession (Book of Blessings, #10; Sacrosanctum Concilium, #60).
Blessed oil may be used by a designated lay minister at the conclusion of the Order for the Blessing of the Sick (Book of Blessings, chapter 2), or likewise, at the conclusion of the rite of a visit to the sick (Pastoral Care of the Sick, chapters 1 and 2), provided that the rites and prayers designated for a lay minister are followed.

Bless Yous

2012-01-01T19:50:00.000-05:00

What a crazy week this has been. It started off with a member of our parish saying one of the rudest things that has ever been said to us and ended with a fabulous opportunity to learn more about my faith. We strive to be authentic Catholics. We fail. A lot. We battle the same sins daily and strive to do better. We have a lot of what we call "Bless Yous" each and every day.

On the illness front, Sean has had 6 headaches in 8 days and my oldest caught a nasty bug from a friend and spread it to his youngest brother. The first day of 2012 started off with illness. Here's hoping we can avoid any trips to the doctor or hospital before we have our neurology appointment! Sean helped to decorate the church for Christmas in spite of having a headache. He managed to have a good Christmas while battling a headache, too. If you saw him at church, you'd never know. He is naturally quiet, so it isn't always apparent that he is in pain.

I have to remind myself that some people do not understand and will never understand life with chronically ill kids. They may not put together the number of times any particular child is not present at Mass with our family or even realize they are there battling pain. I'm putting this comment into my "rudest things said by a church member at church" file. This tops Church Lady telling me it was a blessing and a curse to know our family and later sending me a letter in the mail saying satan has a hold on me. Lovely things people say, huh? This is the part of being Catholic folks might not write about often - the bless yous we encounter on a daily basis. Okay, so church lady was really quite a bless you, but this one......

Just before midnight Mass, a man put his hand on Chris and when Chris asked what he needed, what he could do, the man replied, "Oh, I don't need you, I need someone who will actually do something and not just push their children on us." He ignored my asking twice, "What do you mean push our children on you?' Bless you. That is what we say to people who say or do rude, strange things. Bless you. I spent most of Mass thinking bad thoughts about this man (mostly when I heard his voice). I've gone to confession.... still don't have my question answered. How do we not judge those who judge us? Especially when we let these things slide, never cause a problem and go about our merry way. This is the same man who called our house three times to tell our family the boys should not serve so much. THEN pulled my oldest aside after Mass one day to tell him he was too old to altar serve. Bless you.

If you haven't figured out what a "Bless You" is, it is anything that someone does that is odd, of, strange, rude or otherwise and you can't think of anything nice to say about the person or the action. We just say, "Bless You". It goes hand in hand with the old saying, "If you can't say anything nice, don't say anything at all."

I've been praying and reflecting and I truly hope that I have never said anything so rude to anyone. I'm not perfect, so there but for the grace of God go I. I still have no idea what he meant by that statement and I still know we are not the most active members in our parish. We try to help where we are able. I could psychoanalyze this until the cows come home and never have my answer. Is he upset that my boys serve at funerals and we don't participate? It could be any of a million things!

More about the fabulous opportunity in a bit. Not quite a bless you, but something I found interesting along this journey of trying to live a truly Catholic life.

Unity KOM Challenge

2011-12-31T10:59:00.000-05:00

I made this for the December Unity KOM Challenge

Merry Christmas!

2011-12-25T10:50:00.000-05:00

We are blessed that everyone is healthy on this Christmas Day! We went to Midnight Mass and were able to get a few family photos beforehand. God is good. Merry Christmas!

Winter Days of Giving 2011 Blood Drive

2011-12-22T20:27:00.003-05:00

Sean and Joseph were interviewed for a Red Cross commercial. They didn't use any of their interview, but did use their pictures and talked about them. We hope and pray that it increases blood donations this Christmas season!

WXII12 Winter Days of Giving Blood Drive 2011 from Pattie Curran on Vimeo.

Sonata

2011-12-21T12:52:00.002-05:00

Another piece Sean is practicing for his upcoming competitions.

Sonata L. 104 Domenico Scarlatti from Pattie Curran on Vimeo.

Song Without Words

2011-12-21T12:26:00.000-05:00

Sean is preparing for upcoming competitions. This is one of the pieces he is working on for the UNCG district competition. Song Without Words Op. 102, No. 3 - Felix Mendelssohn-Bartholdy

Song Without Words Op. 102, No. 3 Felix Mendelsshon-Bartholdy from Pattie Curran on Vimeo.

He's got a lot of work to do, but he will get there. His teacher says he needs to work on getting it faster. :o)

I Can Only Imagine

2011-12-21T11:29:00.004-05:00

love the song I Can Only Imagine by Mercyme. I confess that I sometimes listen to it while I am at Adoration. Last week, we had four days of hospital and doctor visits. On Friday, we left the hospital with deflated spirits because we were told to return for testing this week. As we sat around the hospital yesterday, I imagined what heaven looked like, thanked God for iPods and listened to this song. I'm glad there are no hospitals in heaven! I can only imagine.......
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Isn't this a beautiful song? It took me away from the hospital surroundings and made me think of heaven. There won't be any hospitals in heaven!

We have two weeks with no scheduled appointments. I'm very excited about this and can now do more than just lighting the Advent wreath and make it through the season. I feel like I can now fully prepare for Christmas and His birth.

Another Bunny Tale

2011-12-16T20:16:00.001-05:00

Our bunny, Henry, died today. He was the sweetest bunny ever. Last night we found him after he'd had a seizure and brought him to the vet. By the time we got there, he seemed to be completely normal again. I really thought the vet would have to put him to sleep! With all of his medical problems, we never thought Henry would live 4 1/2 years! He had a good life, or so we'd like to think.

We didn't run any tests because the vet said if it was what he thought, there wouldn't be anything we could do for Henry, but he added that he might be okay. We got him home, he ate a few carrots and seemed to be fine until he had another seizure. He seemed to bounce back from that one, but didn't make it through the night. Joseph was able to tell him good-bye before everyone went to sleep.

We have many, many memories. From his medical adventures to daily life. We've always grown carrots and veggies in the garden for Henry (he was a spoiled bunny). He liked all the special treats. We're going to miss him. Joseph would read to him and do school work with him and we think Henry might have learned something! Here are a few pictures of Henry over the years. He's now playing with St. Francis in heaven.

Joseph with 2 week old Henry

Bunny nebulizer Treatment

Joseph fell asleep and Henry stayed here for 2 hours with him!

Studying with Joseph

Halloween

Henry loved to give Kisses

Merry Christmas!

2011-12-12T08:46:00.002-05:00

It's that time of year, where we send out Christmas cards to friends and family. I try to make them all. Here's another one I decided to sew last night:

I have no idea why I decided to sew cards. :o) One observation: sometimes I don't stamp straight! Oh well, it is still fun to send handmade Christmas cards, right? I made a few of the cards below, too. I embossed over stamped images.

Unity Stamp Challenge

2011-12-11T17:00:00.000-05:00

I broke out the sewing machine to make this card for the Unity Stamp Challenge.

Another Pink Christmas Card

2011-12-11T15:03:00.000-05:00

Life is All About How You Handle Plan B

2011-12-09T11:21:00.001-05:00

This week, a friend gave me a sign that says, "Life is all about how you handle plan B." I hung it on my door next to the sign that says, " with God all things are possible". Everyone can see these signs as they leave through our front door. A good reminder, right? One would think. I put it there to remind myself each day of these to things.

Of course, I don't always handle plan B very well, nor do I handle plan C or D as God might like. I often forget that all things are possible with God, too. What I find myself telling God is, "Hey! God! I didn't sign up for plan B, I signed up for plan A." I then proceed to tell Him exactly what I think plan A was supposed to be. I don't just stop there, I often tell God how impossible my life is and that I can't see how He makes things possible. Or, if I do see the "possible", I end up saying, "Ending up in a mental institution is possible, God." "It is going to be possible because I'm not seeing YOUR possible in my life today!"

The last few days have been an epic failure on my part. I don't like God's will, I don't like His plan for my life and I certainly felt like the holy day of obligation came at a very inconvenient time for ME. I admit it, I am self-centered at times. It seems small things are what break my spirit. Wednesday, my youngest had another toe that needed to be drained and we started antibiotics. A small toe with a hangnail turned into an infection. I had immediate flashbacks of the last toe infection, minor surgical procedures and resistant bacteria.

Yesterday, I handled cleaning up [human] urine until the point at which the sucking machine spewed it all over the dry part of the mattress and my body. I didn't curse God aloud, but, boy, you should have heard what I was saying in my head! I've been sprayed with urine and covered in urine before, so this should not have been an insurmountable event in my life. At the moment, it was just the thing satan needed to get me to doubt God was working in our lives. I was upset because plan A was a week without doctor visits and I didn't want this urine-filled, infection ridden week God allowed. So, my youngest failed to follow through with our plan A because he didn't think we needed plan A (waterproof mattress cover) any longer. Also part of our plan A was shoved to the side (a second hospital mattress pad for urine collection) and thus plan B was in full force before we knew it. Plan B spewed urine all over me and I bought a new plan B (little green machine). Plan C is currently working on mattress as I write. A friend told me this morning that if I get to plan P, then urine has declared victory over our lives.

Urine and infections can't win, right? So, life really is all about how you handle plan B or C..... or even D and E. As I sat in church yesterday, I could still smell the urine on my hands (I'd scrubbed them a lot!). I hoped that the priest didn't smell it when I went to confession ~laughter~ By last night, I'd gotten soaked in urine again, showered and life was back to normal. This morning, plan A worked and I'm happy to say that all I'm having to do today is wash urine soaked bedding in the washing machine. Sometimes, plan B is God's plan and sometimes plan B comes about because we fail.

Who knew that I could write so much about urine!? It, as even my oldest will tell you, plays a big role in our lives. I do know that God works in our lives even when we don't see Him or feel Him. He is in the urine filled, infection riddles days just as much as He is in the good days. I doubt Him often, but I'm glad to know that it is okay to receive Holy Communion when one is angry with God or, as I told the priest yesterday, when I hate God. God still loves me when I hate Him. He loves me when I doubt. Thanks be to God for that, huh? I'm blessed that I can receive Him in the Holy Eucharist and gain many graces that help me navigate plan B. (Note: my plan A didn't include Shwachman-Diamond Syndrome or Mitochondrial Disease.... that's why I say we are navigating plan B)

Cards for a Cure

2011-12-09T10:51:00.000-05:00

These are cards I made over the last few weeks. All Unity Stamps. These will be Christmas gifts, eventually! I like to put them in packages and give them out as gifts. (I don't shop at Christmas-- gave it up years ago) If people receive the cards, look up the blog and read about Shwachman-Diamond and Mito, it is a bonus!

Mito Cocktail - Quinine

2011-11-28T12:51:00.000-05:00

Here is what America's Compounding Center says about Quinine:

"Quinine, which is derived from the herb Cinchona succirubra, was historically applied topically to treat hemorroids and varicose veins. It can be prescribed by a doctor as the doctor as the brand-name medication Qualaquin to treat malaria and the tick-borne illness babesiosis. It is also taken by patients to prevent or treat nighttime leg cramps, and can be used to alleviate leg and muscle cramps in patients with mitochondrial disease. Quinine is taken at low doses of 200-300 mg once every evening for leg cramps, but is used in higher doses for the treatment of malaria and babesiosis. Quinine can cause serious side effects, including a condition called cinchonism, which may result in severe headaches, abdominal discomfort, convulsions, and vision problems. Quinine can also cause severe allergic reactions, hearing problems and ringing in the ears, fever, chills, blood abnormalities, confusion, dizziness, changes in heart rate and/or rhythm, jaundice, and kidney or liver problems."

Thanksgiving

2011-11-28T12:21:00.000-05:00

We had a great Thanksgiving break. We were very fortunate that we had no hospital trips during our Thanksgiving vacation. The last time we went home for Thanksgiving, we ended up with J on IV antibiotics for cellulitis, so this was a great trip! We were blessed to see so many friends and family. Even met old San Antonio friends along I10 as we headed home and they headed back to San Antonio. Facebook is good for something! *laughter*

We were especially blessed to see an aunt and uncle this Thanksgiving. Hubby's aunt has stage IV breast cancer that spread to her bones and other organs. She was originally treated in the 90s and it came back and spread throughout her body. The chemotherapy isn't seeming to work well. We continue to pray for her healing. God spoke to me this week through her. She looks wonderful-- absolutely, without a doubt amazingly wonderful. If you didn't know her and you saw her in a store, you'd never even think she had cancer, much less stage IV that has spread throughout her body. The things we can't see continue to boggle my mind! This is one way God spoke to me about His very existence over the holiday.

My mind has many, many battles. We can't see their bone marrow and thus, I often think it just isn't possible that they have myelodysplastic marrow. We can't see the Mitochondrial Disease or the brain. So, again, I have these battles in my mind about the results being real. Sure, we see the pain, the swallowing issues, the bladder issues, the fatigue and myriad of other things that go with Mito, but they seem to be mildly affected. I think this is why the brain MRI results have been so shocking. Anyway, I think God spoke to me in the sense that he was letting me know these things ARE real even when we can't see them. He is real, even when our faith is lacking and we doubt Him.

The holiday is over, now it is back to reality. I need to follow up on all the things I ignored over the last few weeks. *sighs* It felt good to walk away from all the medical issues for a while. I sure wish I could do it forever, but there is a two and a half week email calling my name, follow-up appointments to be made and other various things that need to be attended to. Life goes on. We'll be heading to Atlanta to the Mito doctor in January. Just confirmed the appointment and since he is a neurologist, geneticist and PhD, I think he will be able to explain the MRS results to us! Here's hoping......

Mito Cocktail - Magnesium Orotate

2011-11-17T10:56:00.000-05:00

America's Compounding Center says the following about Magnesium Orotate:

"Magnesium orotate is a naturaly occurring substance involved in DNA synthesis, maintaining healthy heart function, and in producing energy for the body's cells. Magnesium orotate may be used to treat magnesium deficiency, improve exercise performance, and improve heart function in patients with cardiovascular disease. Dietary sources of magnesium orotate include root vegetables and whey. Typical dosing for magnesium orotate ranges from 500 - 2,000 mg twice daily, to be taken before meals. Magnesium orotate supplementation is generally well-tolerates, but patients may experience diarrhea."

Mito Cocktail - Uridine

2011-11-17T10:52:00.000-05:00

America's Compounding Center says the following about Uridine:

"Uridine is naturally present in the body and is a component of RNA whichis used to produce DNA. Urisine is also involved in the breakdown of carbohydrates to produce energy. Some patients with mitochondrial diseases cannot produce uridine. A recent clinical trial has reported that uridine supplementation may improve cognition, muscle control, and kidney function in children with mitochondrial disease and was generally well-tolerated over a period of two years. The ideal dose of uridine for patients with mitochondrial disease is currently unknown. Long-term therapy with 150 mg of uridine daily has been reported as safe. Uridine supplementation may cause stomach discomfort and diarrhea."

Mito Cocktail - Ribose

2011-11-17T10:47:00.000-05:00

America's Compounding Center says the following about Ribose:

"Ribose is a sugar that is produced by the body from food as a source of energy. Ribose may be effective at increasing energy levels, improving ath;etic performance, improving functionality in patients with coronary artery disease, fibromyalgia, and congestive heart failure, and to prevent symptoms associated with the mitochondrial disease moadenylate deaminase (MAD) deficiency (also known as AMPD deficiency) after exercise, such as muscle pain and cramping. Ribose is usually given as a 15g oral dose four times daily, but can also be given before, during, and after exercise to prevent muscle cramping. Side effects of ribose include stomach discomfort, nausea, diarrhea, headache, and hypoglycemia."

Mito Cocktail - N-Acetyl Cysteine (NAC)

2011-11-17T09:42:00.000-05:00

America's Compounding Center says the following about N-Acetyl Cysteine (NAC):

"N-acetyl cysteine, also known as acetylcysteine or NAC, is an antioxidant related to the amino acid cysteine. N-acetyl cysteine is commonly used to treat acetaminophen (Tylenol) overdose; however, there are many other uses for this medication. N-acetyle cysteine is also used to relieve respiratory symptoms associated with chronic bronchitis, cystic fibrosis, and reduce mucous in other lung conditions, and to prevent liver and kidney damage. It is used in patients with mitochondrial disease dues to its antioxidant effects. Dosing depends on the indication, but oral dosing for chronic conditions generally ranges from 200-600 mg two to three times daily. Side effects of n-acetyl cysteine include nausea, vomiting, diarrhea, rash, headache and drowsiness."

Mito Cocktail - Glutamine

2011-11-17T09:32:00.000-05:00

America's Compounding Center says the following about Glutamine:

"Glutamine is a naturally occurring amino acid that is primarily produced and stored in the muscles. It helps the body produce proteins and protects the lining of the stomach. Glutamine also acts as an antioxidant and helps to protect and remove harmful waste products from the liver. Glutamine supplements are used to treat short bowel syndrome, inflammatory bowel disease, inflammation of the mouth associated with chemotherapy, to prevent nerve damage due to chemotherapy agents, to improve wound healing, and to treat glutamine deficiency in patients with mitochondrial disease and other conditions. Dietary sources of glutamine include meats, dairy products, and uncooked spinach. Glutamine is generally given orally as 5 grams (in powder, tablet or capsule form) up to six times daily, for a total daily dose of up to 30 grams per day. Patients should mix the powder with cold or room temperature liquids, as heat inactivates glutamine. Side effects associated with glutamine supplementation include rash, stomach discomfort, nausea, vomiting, swelling in the arms and legs, cough, fever, chills, and liver and kidney problems."

Mito Cocktail - NADH

2011-11-17T09:09:00.000-05:00

America's Compounding Center says the following about NADH:

"NADH, which stands for nicotinamide adenine dinucleotide hydrate, is a naturally occurring chemical related to B vitamins that helps the body produce energy necessary for normal cell function. NADH supplements have ben used to enhance immune system function, increase energy levels, improve athletic performance, decrease blood pressure and cholesterol levels, improve nerve function in patients with Parkinson's disease, decrease the side effects of some medications used to treat human immunodeficiency virus (HIV) infection, and for conditions such as mitochondrial disease that may result in NADH deficiency. Patients typically take between 2.5 and 10 mg of NADH by mouth daily. Side effects reported with NADH supplementation are minimal and include insomnia and anxiety."

Mito Cocktail - Coenzyme Q10 (Idebenone)

2011-11-17T09:00:00.000-05:00

America's Compounding center says the following about idebenone:

"Idebenone is a synthetic product similar to coenzyme Q10 (CoQ10) which is primarily used for its antioxidant effects. The effects of idebenone are being investigated in patients with Alzheiner's disease, optic nerve problems, a type of heart failure known as Fredreich's ataxia, and mitochonrial disease. Patients most commonly receive doses of 90-120mg of idebenone by mouth daily, but doses up to 300mg daily have been used. Side effects associated with the use of idebenone include stomach upset, nausea, vomiting, diarrhea, headache, dizziness, and confusion."

Talking to God

2011-11-16T19:45:00.002-05:00

I've been talking to God lately. I'm in search of answers that may never come and I'm trying to find Jesus in the wake of the unsettling news. Tonight, Joseph asked me again what the abnormalities in his brain meant. I cannot even put into words what it feels like to hear my 14 year old son ask such a question. I told him the truth. These are moments that no parent should ever have with their children. I thought explaining bone marrow failure, bone marrow transplant, neurosurgery and cathing were all hard. I can now tell you, compared to explaining that he has something wrong on his brain MRI/MRS, those things were a walk in the park. In these moments, all a parent can do is pray for the Holy Spirit to bring guidance, wisdom and the proper words to speak.

I've been praying, asking God to somehow make it all go away. I've listened for His voice to tell me it is something else. No one wants to hear that the results indicate a neurodegenerative disease (neuronal degenerative disease). I've asked God over and over again, "What am I supposed to do with this information!? What are we supposed to do with this information!?" My brain is a filing cabinet chock full of stored information. Joseph doesn't have a match in the bone marrow donor registry. Joseph doesn't have a sibling match, either. Both boys have bone marrow failure and have myelodysplastic marrow (pre-leukemic changes in their marrow). Joseph's bladder doesn't function properly, so we test frequently for kidney damage (he'd also not have a match if he needed an organ transplant). We've already filed away that Mitochondrial disease is a progressive neuromuscular disease with no cure and that Shwachman-Diamond Syndrome has no cure and that those kids are less likely to make it through transplant, too. That's a lot of information to file away, and it isn't even the tip of the iceberg.

Every single day, we are faced with the realities that they have medical challenges. From the medical supplies that litter the house to the piles of pills in the kitchen. From the infections to the muscle weakness and chronic pain, we don't get to escape the reality that there is something REALLY wrong. We do our best to live a "normal" life, but sometimes, like recently, when we are given more information, it can be a challenge to confront the information without being emotional. It can be a challenge to go through a normal day. I'd love nothing more than to bury my head in the sand for a few days.

So far, we've done okay. We've avoided becoming emotional in front of the boys, even when one of them asks a question that takes our breath away. I end up talking to God. A lot. I cry late at night when they are asleep. It is a parent's worst nightmare-- having to be honest with your child, but acting as if this really doesn't affect our lives. Reality is that, at this moment, it doesn't change anything. It confirms what we know to be true and it leaves us many, many questions about what the future holds for Joseph. Truth is, the doctors won't know how quickly it could progress. We just have to place it in God's hands and know that He is the only one who knows the course of this disease and the number of days Joseph has on this earth.

Mother Teresa is quoted as saying, "Prayer is not asking. Prayer is putting oneself in the hands of God, at His disposition, and listening to His voice in the depth of our hearts.”

I have been asking God for a cure, for a miracle... or even a call saying they read something wrong. I'm trying not to ask. I'm trying to place it all in His hands..... it is a difficult journey. I know He is with me. That is what gets me through these rough moments where I'm not exactly in love with His will. Next year, this will be filed away and he'll be playing football. This will be a distant memory and just one more thing we check each year.

Mito Cocktail - Vitamin D3

2011-11-16T18:24:00.000-05:00

America's Compounding Center says the following about Vitamin D3:

"Vitamon D3, also known as cholecalciferol, is a fat-soluble product which is naturally produced by the skin when a patient is exposed to sunlight. Fat-soluble vitamins are stored by the body and do not need to be replaced daily through dietary consumption. Dietary sources of vitamin D include dairy products and fish. Vitamin D is necessary for calcium absorption and is involved in bone formation. Adequate vitamin D intake reduces the risk of bone fractures, and may reduce the risk of heart disease and certain types of cancer. Severe vitamin D deficiency may cause rickets, a condition involving softening of the bones and joint malformation due to a combination of calcium, phosphate, and vitamin D deficiency. Causes of vitamin D deficiency include malabsorption or genetic disorders, lack of exposure to sunlight, poor dietary intake, and kidney failure. Because vitamin D is a fat-soluble vitamin, doses are represented in international unitls (IU), rather than milligrams (mg). Vitamin D is commonly given orally in doses of 400-2000IU daily. Side effects are rare, and may include weakness, fatigue, headache, and loss of appetite."

Mito Cocktail - Folic Acid

2011-11-16T17:49:00.002-05:00

America's Compounding Center says the following about Folic Acid:

"Folic Acid, also known as folate or pteroylglutamic acid, is a B vitamin involved in DNA synthesis and the production of red blood cells. In pregnanct women, folic acid is necessary for the development of the baby's spinal cord. Dietary sources of folic acid include green leafy vegetables, beef, eggs, fish, and whole grain cereals. Folic acid deficiency may be due to alcoholism, malabsorption syndromes, genetic and mitochondrial disease, liver disease and certain medications. Symptoms of folic acid deficiency include anemia. fatigue, forgetfulness, headache, and diarrhea. The UMDF recommends a supplemental dose of 1-10 mg of folic acid daily. Folic acid is generally well-tolerated, but high doses may result in side effects such as abdominal pain and diarrhea."

Mito Cocktail - Vitamin K1

2011-11-16T17:41:00.001-05:00

America's Compounding Center says the following about Vitamin K1:

"Vitamin K1, also known as phytonadione or phylioquinone, is a fat-soluble vitamin that plays an important role in producing specific chemicals in the liver that allow blood to clot. Fat-soluble vitamins are stored by the body and do not need to be replaced daily through dietary consumption. Dietary sources of vitamin K1 include green leafy vegetables, such as spinach, broccoli, and kale. Vitamin K1 is commonly administered in newborns to prevent bleeding, and is also used to reverse the effects of the anticoagulant medication, Warfarin. Causes of vitamin K1 deficiency include malabsorption syndromes, genetic defects, liver disease, bowel resections, and poor dietary intake. Vitamin K1 deficiency may cause unusual bleeding or easy bruising. Common doses of oral vitamin K1 supplementation range from 1-25 mg daily. Potential side effects include jaundice and allergic reactions, such as rash, hives, and airway constriction."

Mito Cocktail - NA Succinate

2011-11-16T17:21:00.001-05:00

America's Compounding Center says the following about NA Succinate:

"Na sucinate, also known as sodium succinate or succinate, is a chemical involved in the body's production of energy required for normal cell function. Succinate has been studied to improve mitochondrial function in patients with mitochondrial disease, and may aid in energy production and increase overall energy levels. Succinate is also an antioxidant that helps protect against damage to cells by harmful chemicals called free radicals and may even help to prevent cancer. The UMDF recommends taking 6 grams of sucinate daily."

Mito Cocktail - Biotin

2011-11-16T17:00:00.001-05:00

Here is what America's Compounding Center says about Biotin:

"Biotin, also known as vitamin H, is a water-soluble B complex vitamin that is involved in the metabolism and conversion of food into energy. Water-soluble vitamins are not stored in the body, therefore need to be replaced regulalry in the diet. Biotin helps maintain the health of several tissues, including the eyes, skin, hair, and liver. Dietary sources of biotin include egg yolk, mushrooms, dark green vegetables, liver, and shrimp. Biotin deficiency is rare, since it is normally produced in the intestine. Biotin deficiency is usually due to chronic malabsorption, genetic disorders, or long-term therapy with total parenteral nutrition (TPN), anticonvulsants, or antibiotics. Symptoms associated with biotin deficiency include stomach upset, fatigue, muscle pain, hair loss, anemia, mood changes, and dry skin or a grayish discoloration of the skin. The UMDF recommends taking 2.5-10 mg of biotin daily. Biotin supplementaion has been associated with stomach upset, but is generally well-tolerated."

Mito Cocktail - Selenium

2011-11-16T16:52:00.001-05:00

America's Compounding Center says the following about selenium:

"Selenium is an essential element found in trace amounts throughout the body. It is an antioxidant and may have anticancer and anti-aging effects. Selenium also helps maintain immune system and thyroid function. Dietary sources of selenium include nuts (particularly Brazil nuts), fish, shellfish, meats, and whole grain breads and cereals. Selenium deficiency is rare, but can occur in patients with malabsorption syndromes, genetic and mitochondrial disease, and in alcoholics. Complications of selenium deficiency include changes in the fingernails and nail beds, muscle weakness or pain, bleaching of the skin and hair, and heart problems. The UMDF recommends taking 25-50 micrograms (mcg) of selenium daily. Patients should not receive more than 400 mcg of selenium per day due to risk of selenium toxicity, which can result in fatigue, hair loss, and skin lesions. "

Mito Cocktail - Vitamin C

2011-11-15T12:16:00.000-05:00

America's Compounding Center says this about Vitamin C:

"Vitamin C, also known as ascorbic acid, is a water-soluble vitamin found in fresh fruits and vegetables such as oranges, green peppers, broccoli, tomatoes, kiwi, and strawberries. Water-soluble vitamins are not stored by th ebody, therefore they need to be replaced regularly in the diet. Vitamin C is a natural antioxidant, helps the body maintain skin and bone health, and aids in wound healing. Vitamin C has been studied for many uses, including prevention of the common cold, cancer, and heart disease, as well as treatment of high blood pressure, and acceleration of wound healing in patients with severe burns. Causes of vitamin C deficiency include poor dietary intake, cigarette smoking, malabsorption syndromes, and genetic disorders. Symptoms of Vitamin C deficiency include fatigue, petechiae, bleeding or swollen gums, dry skin, brittle nails and bone changes. In cases of severe deficiency, a patient can develop scurvy. The UMDF recommends taking 100-500 mg of vitamin C one to three times daily. Adverse effects associated with high-dose Vitamin C supplementaton include nausea, stomach upset, diarrhea, and kidney problems. "

Mito Cocktail - Cobalamin (B12)

2011-11-15T12:05:00.000-05:00

America's Compounding Center says the following about B12:

"Cobalamin, also known as Vitamin B12 or cyanocobalamin, is a complex B vitamin involved in DNA synthesis, and in the conversion of food into energy. Dietary sources of cobalamin include meat, poultry, clams, oysters, liver, and dairy. Since cobalamin is stored in the body, deficiency is rare and takes about three years for the body to develop. Cobalamin deficiency most commonly develops in patients with chronic malabsorption syndromes, genetic disorders, and vegetarians who do not consume any animal products. Complications of cobalamin deficiency include anemia (low red blood cell count), fatigue, muscle weakness, poor coordination, confusion, and tingling or numbness in the hands and feet. Cobalamin is available in oral, injectable, or intranasal dosage forms. A common oral dose for patients with cobalamin deficiency ranges from 100-1,000 micrograms (mcg) daily. Potential side effects of cobalamin supplementation include itching, diarrhea, headache, and anxiety."

Mito Cocktail- Pyridoxine (B6)

2011-11-15T11:28:00.000-05:00

America's pharmacy says this about B6:

"Pyridoxine, also known as vitamin B6, is a water-soluble B vitamin involved in the conversion of carbohydrates and protein into sources of energy. Water-soluble vitamins are not stored by the body, therefore they need to be replaced regularly in the diet. Pyridoxine is also necessary to maintain healthy nerve cell function, and is involved in the production of red blood cells and hormones. Dietary sources of pyridoxine include whole grain breads and cereals, spinach, green beans, bananas, carrots, eggs, chicken, and walnuts. Pyridoxine supplementation is used to treat pyridoxine deficiency, which may be due to malabsorption or genetic disorders, alcoholism, poor dietary intake, or certain medications. Symptoms of pyridoxine deficiency include dry, peeling skin, mental confusion, nerve dysfunction, and poor coordination. Pyridoxine can also be used to treat medical conditions such as anemia and nerve disorders. Typical doses used in the treatment of pyridoxine deficiency range from 10 to 250mg daily, but doses up to 600mg daily have been used. Potential side effects of pyridoxine include and increased sensitivity to light, rash, headache, stomach upset, allergic reactions, and tingling or numbness in the hands and feet. "

Mito Cocktail - Niacin (B3)

2011-11-15T10:57:00.000-05:00

America's Compounding Center says this about Niacine (B3):

"Niacin, also known as nicotinic acid, nicotinamide or vitamin B3, is a complex B vitamin. Niacin is used to treat patients with niacin deficiency, known as pellagra, which may be due to poor dietary intake, aging, malabsorption syndromes, or alcoholism. Classic symptoms associated with pellagra include inflammation and irritation of the skin, mental confusion, and diarrhea. Patients commonly develop a rash with darkening or thickening of the skin on the face. Niacin is found in lean meats, poultry, grains, eggs, fish, milk and legumes (such as beans, peas and peanuts). The recommended dose of niacin for mitochondrial disorders ranges from 50-100mg by mouth daily, according to the UMDF. Side effects associated with niacin supplementation include stomach discomfort, flushing of the upper body (particularly face and neck), headache, and liver problems. "

What is N-Acetylaspartic Acid (NAA)?

2011-11-14T16:41:00.003-05:00

This is a question I've been asking over the last month. What, exactly, is this chemical, NAA, that is low in Joseph's brain?

Simply stated, N-Acetylaspartic Acid (NAA) is a marker of neuron integrity and viability. A study in the American Journal of Neuroradiology said the following: Due to its near-exclusive localization to neurons and their processes, NAA is regarded as a marker for their health and density, and its level has been reported to decline in all neurodegenerative central nervous system disorders in adults.

N-Acetylaspartic Acid even has an entire website dedicated to it. N-Acetylaspartic Acid.com
NAA is also known as N-acetylaspartate and NAA is the second most most abundant amino acid in the brain. NAA gives off the largest signal in MRS of the human brain. This along with the fact that it is pretty much exclusive to neurons, makes it a reliable marker. The levels measured in the brain are decreased in many neuropathological conditions ranging from brain injury, stroke, Alzheimer's to Parkinson's. This also makes NAA a reliable diagnostic molecule for doctors treating patients with brain disease.

An article that I found on PubMed says:
An article I found on PubMed says this: "MRS studies of human brain disorders have invariably detected decreases in brain NAA concentrations when neuronal loss or dysfunction are involved with one major exception: Canavan Disease... virtually all other neurological disorders involving neuronal loss or dysfunction result in reduction of NAA levels."

A 2003 Medscape article titled MRI Shows Brain Injury in MS That Precedes Atrophy says the following:
"Neuronal cell death may be an important marker to measure the progression of MS, and this eventually may be a therapeutic target. "First you lose the neurons, and then the axons atrophy," Dr. Gonen told Medscape. "We don't have a treatment that interrupts this process, but physicians can use these images to encourage their patients to take medications that prevent attacks."

The marker for neuronal cell death is the amino acid derivative N-acetylaspartate (NAA). Because this protein is present almost exclusively in neuronal cells, Dr. Gonen and colleagues theorized that quantifying the level of NAA by proton MR spectroscopy would give an indication of whether the patient was experiencing a loss of these cells. Therefore, they sought to quantify the relationship among NAA levels, brain volume, and disease duration to better understand the early developments in MS."

It certainly doesn't give me the warm fuzzies that NAA was ow on his MRS. All of the research into this brain chemical does give me hope for the future, however.

Coping is So Overrated

2011-11-14T13:42:00.003-05:00

Ever had a stress hangover? If you have never experienced one, good for you. I'm in the middle of a ginormous stress hangover at the moment. It is like a real hangover without alcohol consumption. I describe it as making it through a stressful situation and then hitting the wall. This seems to happen to me frequently. More frequently than I would like. The inability to focus, forgetfulness, chest tightness, fighting for every breath, feeling you might vomit at any moment all while feeling you are living in an alternate universe. Smiling on the outside while your inside is doing nothing but and trying to appear as if you have it all together and life is good. Living on the edge of a nervous breakdown is pretty much the best way to describe some days with chronic illness. ALWAYS living on the edge. People who have kids with chronic illnesses will know exactly what I am talking about.

Coping really is overrated. Last night, I woke up because I was gagging and throwing up.... in my sleep. Just a symptom of stress, right? I've never done that before, though I often walk around feeling like I'm going to throw up because I'm continually overwhelmed.I often think, "Who could cope with this?" I think 15 years of this would bring a saint to his knees. Just sayin'.

Just after midnight Friday (aka early Saturday morning), the mito doc emailed me about Joseph's brain MRI/MRS. I had been hoping that not hearing from him meant his original assessment was just another "thing" for us to file away or that his consults with other specialists meant it was nothing or, even better yet, that the hospital here had it all wrong (I take frequent trips to denial). They reviewed the discs and agreed that the NAA was abnormally decreased. He went on to say that this spectroscopy is not classic of Mito, but shows an abnormality that supports Mito. Talk about confusing. We've already received a third opinion on what it means.

It is all real. The abnormality is real. I think this is what plays over and over in my mind. So, while we file it away in the "things to remember" simultaneously with "things to watch" bin, we wonder what this truly means, other than a confirmation of Mito. I don't think anyone, aside from God, can answer that. We know it confirms the Mito Monster is real and that the Mito Monster is affecting his brain, but what we don't know is the course of progression. Can remain stable for long periods? As I have always said, not knowing is really the worst feeling in the entire world. It also gives satan a way in.

If I stop to think about it, none of us knows the number of days we have on this earth. Only God knows that. Why are these abnormalities so distressing, when we know God is ultimately in control of everything? I suppose we all expect kids to be healthy and when they aren't, we worry. This weekend, I've been telling God, "If you are going to give us this much information to process, you need to tell us where the off switch is located." I need to turn my brain off for a few days and let it restart. I wonder if it would work like a computer? Restarting manages to fix almost all of the problems on a computer, except in the case of the blue screen of death.

Mitochondria and Brain Disease

2011-11-14T12:28:00.000-05:00

Mitochondria and Brain Disease is a great article for anyone looking for the link between the two.

"It is not surprising that, in adult neurons, which depend primarily on ATP production to meet bioenergetic demands, any compromises in mitochondrial function place neurons at a high risk for both dysfunction and/or death. The association between mitochondrial abnormalities and disease has been known for approximately four decades, with the description of a patient with hypermetabolism and a skeletal muscle biopsy demonstrating large numbers of abnormal mitochondria, a disorder now termed “mitochondrial myopathy” (Cassarino & Bennett, 1999). There exists substantial evidence that mitochondrial dysfunction and oxidative damage may play a key role in the pathogenesis of neurodegenerative disease. Evidence implicating both mitochondrial dysfunction and oxidative damage in the pathogenesis of Alzheimer’s disease (AD), and Huntington’s disease (HD), as well as ischemia and other neurological disorders, continues to accumulate"

MR Spectroscopy in Mitochondrial Diseases

2011-11-14T12:05:00.002-05:00

Proton MR Spectroscopy of Mitochondrial Diseases: Analysis of Brain Metabolic Abnormalities and Their Possible Diagnostic Relevance

http://www.ajnr.org/content/24/10/1958.full

I've been trying to find medical papers on MRS in Mito. This one seems to be quite useful. Our doctor sent us a good one, but I have not been able to find it on-line. I'd say enjoy reading, except, if you are interested in reading, it isn't likely because you enjoy the topic (at least this is the case for me...I wish I'd never heard of Spectroscopy, to be honest)!

A quote from the article: "Mitochondrial diseases with respiratory chain dysfunction are a wide group of clinical disorders that result from mutations in mitochondrial or nucleus-encoded OXPHOS subunit genes. Skeletal muscles and brain are the most commonly affected tissues mainly because their energy production strongly relies on mitochondrial oxidative phosphorylation. However, other organs and tissues such as heart, liver, kidney, and endocrine glands may also be involved. Different syndromes have been described on the basis of the type of primary or nucleus-driven mitochondrial DNA (mtDNA) mutation, but in most cases the consequent biochemical defect is not related to a single clinical manifestation. Diagnosis is often a challenge, based on a multidisciplinary approach that uses clinical, biochemical, neuroradiologic, and genetic data (1–3)."

When Neuromuscular Disease Affects the Brain

2011-11-14T11:03:00.001-05:00

The MDA has a great article titled When Neuromuscular Disease Affects the Brain
The following is an excerpt from the last portion of the article that addresses Mitochondrial Disease:

"Mitochondrial Diseases: Damage to the Brain

  Of all the neuromuscular diseases covered in MDA’s program, those that have to do with the mitochondria — the tiny energy-producing units tucked inside human and animal cells — are perhaps the most mysterious, confusing and challenging for physicians and families.
   All cells and the tissues in which they’re located require energy to function, but some tissues — such as the brain and muscles — require more energy than others. That’s probably why defects in mitochondrial function hit these areas hard.

There are several types of mitochondrial diseases, and they all have different characteristics. What’s even more confusing is that even when a mitochondrial disease runs in a family, various family members can have different symptoms or degrees of severity, even though their mitochondrial flaw may be the same.    Neuromuscular disease specialist Tim Miller at Arizona Health Sciences Center in Tucson says it isn’t so much the mitochondrial defect itself that makes the difference in cognitive functioning. Instead, as with the congenital muscular dystrophies, it’s the presence or absence of severe seizures, as well as two other aspects of mitochondrial disease — strokes and high levels of lactic acid in the blood.
   “Seizures are a major factor,” Miller says. “For kids with underlying mitochondrial changes, you have to worry, because seizures can damage things even worse.”
   Fortunately, Miller says, seizures can often be adequately controlled with medication. But these medications can themselves cause some side effects, which can include sleepiness, confusion, memory problems and trouble with vision. The benefits and side effects have to be carefully weighed by the doctor and parents and the dose meticulously monitored.
   Strokes or “strokelike episodes” occur in some children with mitochondrial diseases. A “stroke” is the term for an interruption of blood supply to the brain, with resulting brain damage, either temporary or permanent. Strokes can be caused by either abnormal bleeding in the brain or an obstruction to blood flow in the brain.
   “There are probably changes in the brain’s blood vessels,” Miller says. “We know that mitochondrial dysfunction can affect blood vessels.” (Other experts say strokelike episodes may sometimes be seizure-related.) Unfortunately, there’s little that can be done to prevent or control these episodes.
   When mitochondria don’t produce energy for cells in the usual way, energy-producing pathways are altered, leading ultimately to the buildup of lactic acid. When enough of this chemical gets into the blood, it changes the blood’s acidity level, which leads to a host of unwelcome changes in body chemistry. This lactic acidosis isn’t good for the brain, causing a variety of cognitive symptoms.
   “The body maintains a very strict level of acids and bases,” Miller says. “Any time that level is affected, it can affect thinking.”
   Miller says a medication called lactulose (brand names Constilac, Chronulac and others) can sometimes be used effectively to draw off some of the acid into the intestines, but that the best approach may be to try to prevent lactic acid buildup from occurring in the first place.
   Making sure the child’s respiratory function is adequate, preventing or promptly treating infections, and maintaining good nutrition can all help prevent lactic acidosis, Miller says.
   “When kids are challenged with something like an infection, that may make it more difficult for them to stay in [metabolic] balance,” he says. Parents have to be on the lookout for signs of infection and for cognitive symptoms that suggest lactic acid may be building up. Diminished concentration, diminished talking, confusion and irritability are among those symptoms.
   The brain’s vision-processing cells, as well as the retina at the back of the eye and the muscles that control eye movements, can all be affected in mitochon-drial diseases, so vision can be a problem.
   Vision therapy may be helpful, as can assistive technology such as adapted computer screens and computer-operating devices.
   Hearing can also be affected, and some children need hearing aids and/or devices to help them communicate.
   Children with mitochondrial diseases and their families often need referrals to hearing and speech specialists, vision specialists, respiratory doctors and therapists, educational specialists, and social workers or counselors. (Ask about these specialists at your MDA clinic and through the public school system in your area.)"

Mito Cocktail- Thiamine (B1)

2011-11-14T02:04:00.000-05:00

The handout from our compounding pharmacy, America's Compounding Center, says the following about Thiamine:

"Thiamine, also known as B1, is a water-soluble, complex B vitamin. Water-soluble vitamins are not stored by the body, therefore they need to be replaced regularly in the diet. Thiamine is essential to maintan heart and nerve cell function, and for converting food sources into energy. Thiamine is commonly found in legumes (such as beans, peas, and peanuts), whole grain cereals and breads, pork,m and beef. Common causes of thiamine deficiency include poor dietary intake, malabsorption syndromes, alcoholism, prolonged diarrhea, and states that increase thiamine requirements, such as pregnancy. Thiamine deficiency, known as beriberi, can cause neurological symptoms, such as tingling or loss of feeling in the hands and feet, and muscle weakness. Patients with thiamine deficiency may also experience cardiac symptoms, such as increased or abnormal heart rate. The UMDF recommends taking 50-100mg of thiamine by mouth daily., but doses up to 800mg daily have been used in patients with mitochondrial disease. The most common side effects associated with thiamine supplementation include allergic reactions, such as rash or hives, and stomach upset, which can be minimized if taken with food."

My First Holy Communion

2011-11-11T15:23:00.000-05:00

Here is a blast from the past. This is a picture taken with my friend, Lisa, on the day of my First Holy Communion. March 13, 1977. It is an old Polaroid.

We didn't attend church very often when I was growing up, at least not that I can remember. This was especially true after my First Holy Communion and our move to another state. On this day, God had a special plan for me. Of course I didn't know it then, but look how far I've come-- and He protected me and drew me closer to Him each and every day. God is good!

Mito Cocktail - Vitamin E

2011-11-11T15:16:00.000-05:00

Vitamin E can be part of a person's Mito Cocktail. Remember that each Mito patient is different and the cocktail is tailored to the individual. America's Compounding Center says this about Vitamin E in their Mito Cocktail handout:

" Vitamin E, also known as tocopheral, is a fat-soluble vitamin. Fat Soluble vitains are stored by the body and do not need to be replaced daily through dietary consumption. Vitamin E is a natural antioxidant and is involved in the formation of red blood cells. Dietary sources of Vitamin E include vegetable oils, nuts, seeds and green leafy vegetables. Vitamin E has been studied to prevent cancer, Alzheimer's disease, diabetes and heart disease, as well as to treat dementia and improve cognition. However, these results have been somewhat controversial and inconclusive. Vitamin E deficiency is rare (since it is stored in the fat), and occur most often in premature infants and patients with abnormal fat absorption due to genetic or malasorption disorders. Symptoms of Vitamin E deficiency include muscle weakness, anemia, and nervous system dysfunction such as tingling or numbness in the hands and feet, loss of balance, and lack of coordination. Because vitamin E is fat soluble, doses are generally represented in international units (IU), rather than milligrams (mg). The UMDF recommends taking 200-400 IU of Vitamin E one to three times daily. Side effects of Vitamin E supplementation include nausea, diarrhea, bleeding or bruising easily, headache, and fatigue. Patients with certain health problems such as diabetes or heart disease, should not take more than 400IU of vitamin E daily, as some studies have shown that it may increase the patient's risk of death."

Making Cinnamon Rolls

2011-11-11T10:46:00.000-05:00

Sean is my not-so-little chef. He has always liked to cook and bake. This morning, he make Wildtree's Sunday Morning Cinnamon Rolls . They are so easy to make, even my 15 year old can do it! I drank my coffee and read The Daily while he worked away. I captured these photos of the entire process from start to end. If you are interested in Wildtree products, check out my Wiltree website. Have a blessed day!

1 Cross + 3 Nails = 4 given

2011-11-11T10:33:00.000-05:00

I don't like all of the cards I make... I love the stamp set, but I'm not sure about the card. I figure I should go ahead and share those cards I feel are dismal failures, too. This is the first week in a long time that we have not had to go to ANY doctor's appointments. I thought we might, but we were able to avoid going. Yeah us! Sean has finally recovered from football and made it to play racquetball at the Y for the first time since we joined. He has always been too tired to come along. No one stayed up or woke up with pain last night, so life is good.

I just posted my Sugar-free Vanilla Creme Brulee recipe in Pattie's Kitchen. Check it out. I can't tell the difference and I am a sugar snob.

So, now for the card I don't think is all tat great. You win some, lose some.

See what I mean..... not my best work ever.

Mito Cocktail - Creatine Monohydrate

2011-11-10T10:49:00.000-05:00

I'm learning a lot as I share information from America's Compounding Center's handout. I think it is wonderful that they send this with the part of the boys' Mito Cocktail they compound for us.

"Creatine Monohydrate is a naturally occurring substance that is stored in the muscles and serves as a source of energy. It is produced in the liver, kidneys and pancreas, but can also be found in meats and fish. Creatine supplements are often taken by body builders and weight lifters to improve athletic performance. The UMDF recommends taking 5g of creatine twice daily. Side effects of creatine supplementation include stomach upset, nausea and muscle cramping."

Mama's Mission of the Month

2011-11-10T10:36:00.000-05:00

I'm doing well with Christie's November Challenge and I'm making headway on the other tasks I placed on my Mama's Mission list this month. I find making it to daily Mass is so rewarding, but it is SO hard to get to Daily Mass when I've been up at night. I made it once last week, but haven't gone this week. Tomorrow, I hope to get there. It is my goal for Friday morning.

My youngest has had a bad Mito week so far. Back pain woke him up and kept him up for a while one night, another night it was eye pain and last night he was having unusual symptoms of feeling weak and dizzy (along with stomach pain). Dear God, he's not my dizzy one! He has had a few bouts of dizziness in the past, but nothing like his older brother. That is supposed to be Sean's symptom and not his! ~laughter~ He seems better this morning, thankfully. I am offering many prayers of thanksgiving because of the Neurontin's effects on Joseph's pain. Here is a picture we took yesterday at the YMCA. Joseph playing racquetball. Something he had to stop because the foot, ankle, back and leg pain were too much. So, while he's had some bad nights, I am thankful for the good days.

Racquetball brought to you by Neurontin

What's up with the late night pain? I wish I could remember everything from all of the Mito sessions I have gone to. He does seem better most mornings-- unless he is having one of his "I'm going to vomit" days. In the scheme of things, our kids are really mildly affected by Mitochondrial Disease. Today, I am remembering in prayer all the Mito kids who are in the hospital right now. Hope to go visit one of our friends today. Muffins are in the oven!

Mito Cocktail - CoQ10 (Ubiquinone)

2011-11-09T21:58:00.000-05:00

America's Pharmacy sent us this wonderful information sheet on all the components of the Mito Cocktail with our boys prescription. They were helpful and worked to get our insurance to cover the Mito Cocktail, too!

"CoQ10 also known as ubiquinone, is a natural antioxidant that is involved in producing a molecule that serves as the primary energy source for all cells. Dietary sources of CoQ10 include fish, meats, eggs, spinach, and peanuts. CoQ10 has been used in studies to prevent cancer and heart disease, increase energy levels, lower blood pressure and cholesterol levels, enhance immune system function, and for the treatment of mitochondrial disease. The UMDF recommends taking 5-15mg per kilogram of ubiquinone daily. In general, CoQ10 is well tolerated, but some side effects include nausea, stomach upset, headache, loss of appetite, and dizziness."

Mito Awareness Won!

2011-11-09T14:30:00.001-05:00

I'm so excited! I just found out that my Mitochondrial Disease Awareness Card won the challenge. I receive a $20 gift certificate. I love free stamps! You can see the post here

Unity Opportunity Challenge

2011-11-09T14:09:00.000-05:00

Here is a card I made for the current Unity Opportunity Challenge:

I used a set by Unity (Jillibean Soup) called Snowflakes Fall From Heaven.

Mito Cocktail - Carnitor (L-carnitine)

2011-11-09T12:32:00.000-05:00

America's Compounding Center says the following about L-carnitine:

"Carnitor, also known as L-Carnitine, levocarnitine, and carnitine, is an amino acid that is naturaly produced in the liver and kidneys and is stored primarily in the muscles, heart and brain. It helps the body convert fat into sources of energy. Dietary sources of carnitine include meats (particularly red meat) and dairy products. Carnitine deficiency is rare, since the body usually produces an adequate amount, and is often due to a genetic defect, such as mitochondrial disease. Premature infants who are fed exclusively formula that does not contain carnitine may also become deficient. Symptoms and complications associated with carnitine deficiency may include muscle weakness, liver problems, heart failure, and hypoglycemia. ...The typical dosing range for patients wth mitochondrial disease is 30-100mg per kilogram daily. The UMDF recommends starting at 30mg/kg/day, and increasing to a maximum of 10mg/kg/day. Side effects associated with carnitine therapy include stomach upset, diarrhea, body odor, and rash. Carnitine may also increase the risk of seizures in patietns with a history of seizures."

Mito Cocktail, an Introduction

2011-11-09T12:24:00.000-05:00

According to a handout from America's Compounding Center, "The Mitochondrial Cocktail or "mito cocktail" refers to a combination of commonly used vitamins and minerals taken by patients with mitochondrial disease. There are many different types of mitochondrial diseases, which may be genetic or acquired. DNA mutations result in mitochondrial dysfunction, which impairs the ability of the body to convert food into energy. Although there is no cure for mitochondrial disease, many patients respond well to dietary supplementation."

MitoAction has a great explanation on its blog that can be found at this link: The Mito Cocktail Explained I think this is a good article that will help to gain a basic understanding of what the Mito Cocktail is.

Mito Cocktail - Riboflavin (B2)

2011-11-09T11:04:00.000-05:00

The Foundation for Mitochondrial Medicine says this:

"Mitochondrial disease means the power plants in cells don't function properly. When that happens, some functions in the body don't work normally. It's as if the body has a power failure: there is a gradation of effects, like a 'brown out' or a 'black out'.

Scientifically, it is actually a category or group of diseases. That's why mitochondrial disease takes many different forms and no two people may look alike."

Because these powerhouses of the cells (Mitochondria) do not function properly, patietns take the Mito Cocktail to help improve cellular function.

The information on Riboflavin (below) comes from the sheet our compounding pharmacy sent to us. America's Compounding Center says this about Riboflavin (B2)

"Riboflavin, or vitamin B2, is a water-soluble B vitamin necessary to maintain healthy cell function in the eyes, mucous membranes, skin, hair and nails. Water-soluble vitamins are not stored by the body, therefore they need to be replaced regularly in the diet. Dietary sources of riboflavin include green leafy vegetables, dairy, eggs, meats, poultry, fish and whole grain cereals. Common causes of riboflavin deficiency include malabsorption syndromes, alcoholism, and poor dietary intake. Symptoms associated with riboflavin deficiency usually affect the eyes and skin and include blurred vision and sensitivity to light, dry, flaky skin and sore throat. Riboflavin supplementation has been used to treat patients with riboflavin deficiency and has also been studied for migraine prevention. The UMDF recommends that patients take 100-400mg of riboflavin by mouth daily. Doses between 100 and 120 mg daily have been studied in children with mitochondrial disorders. The most common side effect associated with riboflavin is a bright yellow-orange discoloration of the urine. "

The Mito Monster Never Sleeps

2011-11-09T10:50:00.000-05:00

We've had a few rough Mito nights this week. We are hoping to put them behind us and move to better things! That's part of the Mito Monster we battle.. some days are so good that you forget Mito is a part of your life, while others the Mito Monster lets you know he is there. The Neurontin has helped, but it doesn't take away all of the pain and it isn't a cure for Mitochondrial Disease.

At one conference I attended, the doctor explained why Mito patients might experience more pain when they lie down to go to sleep. I need read my notes again! I've forgotten the why behind it, but do know he said it happens in Mito. MitoAction has a great article on pain in Mitochonrial disease. Pain MitoAction

Here are a few quotes from the article. It goes into headaches in Mito, neuropathies in Mito, so forth and so on.

"Neuropathic pain is pain coming from the nerves due to nerve damage. These types of nerve problems are called neuropathies, and are considered a characteristic feature of mitochondrial disease."

"Muscle pains and aches are of course very common in patients with Mito due to the muscles involvement in the process of OXPHOS as part of energy production. Pain in the muscles may be exacerbated by exercise, exertion, and dehydration."

"Headaches are very common. Patients may suffer from migraines, tension headaches, chronic daily headaches and combinations of these."

The article goes into several more common pains found in Mito and describes treatment. It is well worth the read. It is good to know that we are not alone. While we don;t want anyone else to suffer, it lets us know this Mito Monster is real.

Be Careful What You Say.......

2011-11-08T17:12:00.000-05:00

The other day, I had someone make the comment that I should be careful about what I say on my blog. She suggested that I nott say anything that could be reported. What!? Over the years, I have been thankful for those moms who shared their experiences with me. If you aren't a parent of a chronically ill child, you might not understand how much these shared conversations, stories and experiences mean. I'm lucky that there are Mito moms close enough to visit in person. That takes things to an entirely new level. We are blessed to be able to go to Shwachman-Diamond Syndrome week at Camp Sunshine where we meet SDS families from around the world. We even traveled to visit some of our SDS friends this summer in Colorado. We also get to meet other families when we travel to Cincy... all a blessing on this journey. We've hosted SDS families in our own home as they travel up to Cincy and other hospitals around the country. These friendships have been a huge source of support for me over the last 15 years.

On our family website, I have pictures of the boys receiving IgG. I have pictures of their bone marrow biopsies. To some, it might seem like too much information, bu to others who have never seen these things before their own or their child's procedure, they are helpful. I would loved to have this information before they started IgG or before their first bone marrow biopsy.

I wish I could share some of the emails I have received. I haven't kept them. People have emailed me to thank me for posting these pictures, for writing the books and articles I have written. Not only did these things help them to understand and cope, some of them had children who benefited from our shared experience. That is my biggest hope in writing what I write. I hope that I can help others. I hope that others won't feel so alone on this journey. One mom told me that coming across our family website made her hopeful, joyful and happy. Her son had been diagnosed with Shwachman-Diamond Syndrome and she and her husband were depressed and feared the future. When she saw the pictures of our boys, read the stories about them leading normal lives, she was filled with joy.

Some of what I share here may be shocking to some-- life with Chronic illness isn't always pretty. Some days we cope and others not so much. Our lives are centered on Christ, and while not always perfect, we mange to have what I'd like to believe is a normal life. I am careful in what I say here, as in, I don;t ever mention our doctors by name ~ smile~ The rest is shared for those who might find comfort in this awful, crazy, beautiful life along SDS Highway 101 and Mito Highway 101.

Mito Cocktail - Alpha Lipoic Acid

2011-11-08T10:40:00.000-05:00

There is no cure for Mitochondrial Disease. The Foundation for Mitochondrial Medicine says the following:

"Currently there are no highly effective mitochondrial disease treatments. Though related symptoms, such as seizures or attention problems can be managed with various medications, the mitochondrial disease itself is unchanged. Unfortunately, supplements such as CoQ10 and L-Carnitine have little to no effect on most patients.

In 2009, FDA approval occurred for an EID (Emergency Intervention Drug) to treat a mitochondrial disease with the new drug from Edison Pharmaceuticals, EPI-743. This represents the first steps toward viable treatments and hopefully, the beginning of many more near-term advancements in mitochondrial medicine research."

I've met many Mito families who have asked what the various components of the Mito Cocktail are, and what does each one do or target? Today, I wanted to write about Alpha Lipoic Acid (ALA). Our compounding pharmacy (America's Compounding Center) sent us the following information on ALA.

"Alpha Lipoic Acid (ALA), also known as thioctic acid, is an antioxidant that is naturally produced by the body and helps convert glucose into energy. Dietary sources of ALA include red meat, liver, broccoli, spinach, and yeast. ALA deficiency is rare, as healthy patients produce enough themselves, but certain genetic and metabolic disorders can lead to a deficiency, including patients with mitochondrial Disease. Because of its effects on glucose, ALA has been studied to improve circulation, prevent nerve damage, and improve blood glucose control in patients with diabetes. ALA may also improve mental function in patients with dementia because of its antioxidant effects. The UMDF recommends taking 60-200 mg of ALA three times daily. Side effects associated with ALA supplementation include nausea, vomiting, rash and headache."

I'm hoping to get information on all the Mito Cocktail components on my blog soon.

30 days of Giving and Thanks - Giving Blood and Marrow

2011-11-08T10:17:00.000-05:00

November is rolling right along, isn't it? I've been trying to do extra deeds of giving and thanks, though we typically do this year-round. I've been able to do my normal activities and add a little here and there. We often bring meals, food and other items to friends.

The boys will be featured in a Winter Days of Giving commercial that airs in our local area all December long. We shot the commercial last month-- we hope it will encourage others to donate blood. This time of year is when they REALLY need blood donors. I'm continuing with the challenge, but won't write about all of the extra things I've done. Somethings are better left unsaid, right?

I'm hoping that others will give blood this Christmas Season, this is what I'd like to write about right now. Blood and bone marrow donors save lives. Having two boys with Shwachman-Diamond Syndrome, a bone marrow failure syndrome, we realize the need for blood and blood products. We have many friends whose lives were saved by generous blood donors. Sean and Joseph received IgG (a blood product made from blood plasma) for over 9 years. Joseph has been off of IgG for a few months and we are hoping he will continue to do well lke his brother, Sean, who has been off of IgG for 2 years.

Joseph almost went to transplant back in 2006-early 2007. The doctors felt it was a real possibility-- so much so that they did a preliminary search of the bone marrow donor and cord blood registries registries (6.5 million registered donors) in preparation. We found out that Joseph doesn't have a match. Our family was retyped (HLA typing was also done back in 2000 when they felt the boys wold be going to transplant) -- it confirmed that Matthew is a perfect 10/10 match for Sean and not a match for Joseph.

We lost a SDS friend last year because he developed leukemia and did not have a match. He died waiting to receive a bone marrow transplant. There are many people who are waiting for life saving bone marrow. If you are interested in how to become a donor, please visit www.marrow.org

Son Of Braves GM has Mitochondrial Disease

2011-11-06T09:49:00.000-05:00

I read an article today about the son of the Braves GM who has Mitochondrial Disease. It is uplifting! He plays baseball at the college level and it made me think of the baseball player in our house who has Mito. You can read the article here.

It sounds a lot like my boys. Dr. Shoffner is amazing and I am glad that he is tireless in his efforts to find real treatments and a cure for Mitochondrial Disease.

A few quotes for those who don't want to read the entire article:

"It seemed the more he worked out, the worse shape he’d be in. If he started off bench pressing 185 pounds, he was down to 130 the next week. He’d have cramps that lasted two hours after a football game, no matter how much fluid he drank. The longer he played in a game — and as a ninth grader he played fullback, linebacker and kicked and punted for Landmark Christian’s junior-varsity team — the worse he got."

"He didn’t know it, but he was dealing with a chameleon of a disease. It targets mitochondria, “power plants” in almost every kind of cell in the body which convert nutrients from food and oxygen into energy. Mitochondrial disease can affect different systems in the body — brain, heart, muscle — at different times in different people. It’s complex and difficult to diagnose."

"A frantic call to the neurologist, who then consulted Wren’s other doctors, brought word: Wren should see Dr. John Shoffner, a specialist in mitochondrial disease. He was world renown and practicing in Atlanta."

LSU v Alabama

2011-11-06T09:42:00.000-05:00

The boys' football games were cancelled due to bad field conditions. I think we were supposed to be sad about this, but we were elated! This made it possible for us to watch the LSU game live, in real time!

What a game! Sean had a migraine and ended up going to bed as halftime started. That's just life with Mitochondrial Disease. It was a nail biting game all the way through OT. In the end, LSU won in OT 9-6. Geaux Tigers! I feel a National Championship game coming on........

This is the play of the game according to The Daily. I agree. This interception saved LSU.

Mito Awareness Card

2011-11-04T17:53:00.001-04:00

I'm in love with this $6 set from Ippity! It is called All things are possible. When I saw it, I knew I had to have it to make Mito Awareness cards. See the entire set below or at the hyperlink above. 5 stamps for $6 is an awesome deal. I also made another 4 X 4 Mito Awareness card for the Unity Opportunity Challenge with this set. Isn't it cute?

The entire set:

System Overload......Struggling to Find God

2011-11-04T12:22:00.005-04:00

Do you ever doubt God's presence? I certainly do. It is a battle for me, especially on days like yesterday. Some moments take my breath away. These moments leave me feeling like God couldn't possibly exist, because, if He did, surely He would have heard my plea for no more. I'm certain I've told him that my brain is full, my life is full and I cannot handle even one more teeny, tiny thing. This leaves me wondering if praying really does any good. I have specifically asked God for less appointments and we walked out of the second appointment of the day with four more! He obviously did not get my memo.

Apparently, He sees something in me that I don't see. Other people see something in me that I can't see. My brain is on system overload. I forget so many things. What is God thinking? Doesn't He know I'm not the right person for this job? I'm not even doing a god job as wife, mother and homeschooler..... Oh, I try, I just fail. A lot. Our medical world adds an extra dimension that I have never been able to overcome.

Joseph's brain MRI/MRS was abnormal. Check. I've spent the last several weeks battling with my mind. It isn't real, surely it can't be anything that bad, God wouldn't allow this and the test just has to be wrong. At the very least, it is unsettling to learn your child's brain is affected by the monster we call Mitochondrial Disease. I want to file it away under "check, I know this" and never look back. I wish I could keep it to unsettling. I'm trying, but somehow, God doesn't allow me to forget.Why!?

I also forget that I come across as competent and normal. Those who don't know my innermost thoughts seem to think I have it all together. Yesterday, the doctor had Sean leave the room. She gave me the most wonderful accolades and said to me, in reference to the other doctor, "This would be a good teaching moment," then proceeded to discuss Joseph's brain MRI/MRS results. While I knew what they were, hearing her describe it and say it was "very abnormal", just made my heart sink. She has the same questions that I do-- how quickly does it degenerate? When do we repeat it? She told the new doctor about Shwachman-Diamond Syndrome and Mitochondrial Disease, which is a good teaching moment for him... but darn it, I hate being the freak family on display (no, she doesn't think that, it is what I feel). When I told them that I didn't think it was a good thing that the specialist who ordered the test had to consult with other specialists, they agreed all too quickly. If God was present in my life, wouldn't He stop some of this? Especially when I've got my hand up and saying, "I can't hear or take any more of this!"?

These are the moments I wonder about God's existence. I wonder if He hears our prayers, and if He does, how does He decide which ones to ignore and which ones to answer? I know Jesus was a real person who walked on this earth-- one of my degrees is in religious studies and I took classes on that very topic- Jesus in History and Tradition. We looked at the Gospels and other writings of the time and it is clear Jesus existed. The problem for me is proof that He is still here today. Yes, I know He didn't heal everyone while He walked the earth, which is, I suppose, my answer.

Lord help my unbelief. Help me to see the many prayers you have answered-- especially when doubt fills my mind.