MItochondrial Disease Awareness Week 2011

Galatians 6:2

Bear one another's burdens, and thereby fulfill the law of Christ.

I am begging everyone to bear this burden of mitochondrial disease with us for one week! It is so easy! All you have to do is help us turn facebook green by changing your profile picture to the one in this post.

Did you know.....80% of children diagnosed with Mitochondrial Disease before the age of 5 will not survive to see 20 years of age? If it was your child, would this statistic be acceptable to you?
Ana has been sick since birth and was diagnosed at age 3! If this bothers you just a little, then help us spread the word! Change those profile pictures and spread awareness. Let's turn facebook green!

Instructions:

1) Right click on the picture above and save it to your computer.

2) Log in to your facebook profile and click on your profile picture to change it.

3) Click the upload tab and upload the picture to your profile.

4) Leave it up from September 18th to September 24th!

Please visit www.UMDF.orgto learn about other ways to advocate for Ana Maria. The UMDF website will even assist you in sending a letter!

Mitochondrial Disease Awareness Week 2011

Today marks the first day of Mitochondrial Disease Awareness Week!!!

Help us spread awareness!!!

If Ana has ever made you laugh, cry, think, or pray, then change your facebook profile picture to the one in this post. Keep this profile picture from September 18th through September 24th! Lets see if we can turn facebook green!

On Monday, I plan to show Ana her group member list and my friend list. I pray they are all green and she can see how much you all care about finding a cure. People assume mitochondrial disease is rare, but it is not! Kids are not the only ones affected!

Please visit www.UMDF.org to learn about other ways to advocate for Ana Maria. The UMDF website will even assist you in sending a letter to your state representatives!

Instructions:

1) Right click on the picture above and save it to your computer.

2) Log in to your facebook profile and click on your profile picture to change it.

3) Click the upload tab and upload the picture to your profile.

4) Leave it up from September 18th to September 24th!

Exciting News...

Creation Museum

Therefore I say to you, all things for which you pray and ask,

believe that you have received them,

and they will be granted you.

Mark 11:24

Ana has now been enema free for 6 days!!! The laxative trial is working better than any of us thought possible! Ana is so HAPPY!

Our days have been full with x-rays, attractions, and new friends. The hospital graciously provides free tickets to almost every attraction in Cincy... we have been to the Fire House Museum, The Cincinnati Museum Center (3 museums in 1), and the Cincinnati Zoo... we are so thankful for the generosity of these venues! God has blessed us in so many ways! Last month in Beaufort we met a man connected to Answers In Genesis and this has led to new found friendship... not only with his family, but also with others in his local church family up here in Ohio. We are so thankful for the wonderful people God has placed in our lives on this trip. The food, the fellowship, the friendship, and the fun! We have also had the opportunity to spend lots of time at the Creation Museum which has been a great outlet for the children and we are so thankful for the generosity of our new found brothers and sisters in Christ! I am so amazed at all of the answered prayers... God is so GOOD!

Pray that Ana continues to do well in the Bowel Management Program. Pray that her ultrasound is normal friday and we get a good report from Urology! Pray for Ana's peace and strength as she has taken on 4 more doses of medication to make this all possible... this new regimen takes her from 8 doses of medication a day to 12... pray for me as I work hard to establish a routine to keep all of her meds on a schedule.

PLEASE say a special prayer for Eithene's family as

they lay her sweet body to rest on Friday.

Please forgive any typographical errors... it is 12:30AM and I am very tired.

Ana & Sage dressing up to play "Vet" at the Children's Museum.

Ana playing in the ball room at the Children's Museum.

This parrot decided to take a rest on Emily's head!

Quick Update

This is a very brief update as it is time for sleep. I plan on doing a full update tomorrow.

The initial abdominal x-ray looked perfect... this was a post enema x-ray and we expected it to be clear. Friday we attended a laxative lecture and had an appointment with Dr. L. He is letting Ana try laxatives in place of enemas, but not confident it is going to work. She has been on the new regimen for 3 days and tomorrow morning she will have another x-ray. We are praying her bowels are clear. If they are clear we will continue as planned, if not the doctor will attempt to tweak the doses of meds. Ana is so happy to be enema free... even if it only last a short time.

I also wanted to let everyone know that we raised above and beyond the needed funds! God is so good!

I will have a more detailed update tomorrow and maybe a slideshow! Please keep praying!

Healthy Heart!

I am very happy to report that Ana's heart is healthy! No signs of myopathy at all! She did so well with all of the tests and we are very proud of her.

Our plans are all on track for the Cincinnati trip. We have had some donations over the past few days and only need $169.00 to meet our goal of $1,600!!!! I am so amazed at God's faithfulness! I realize these numbers don't match the "Chip In!" tracker and that is because the other donations have been delivered to us in person or through the mail. Thank you so much to everyone who has donated to help Ana get the BEST medical care! May God Bless each and every one of you for your giving hearts!

Below is Ana's schedule for Cincinnati.

• July 7-> Travel Day
• July 8-> Enema Lecture; Abdominal x-ray; Appt. with Dr. L
• July 11-14-> Bowel Management- Daily Abdominal x-ray
• July 12-> Colorectal Parent Group
• July 15-> Renal Ultrasound; Abdominal x-ray; Appt. with Dr. A; Appt. with Dr. L
• July 15-> Travel Day

Therefore I say to you, all things for which you pray and ask, believe that you have received them, and they will be granted you. (Mark 11:24)

Please pray... as you read this... for the last $169 we need for this trip! With God ALL things are possible!

Atlanta Update...

First, I want to thank everyone who has donated to help Ana! God is so faithful! We are only $575 away from our goal of $1,600 by July 1st! That is amazing! THANK YOU!!!

Now, about Atlanta... We left for Atlanta Tuesday morning at 8AM, saw the doctor at 1PM, and made it back home at 8PM! It was a very long day for the children. The mito specialist has decided to increase her folate dose. Ana is now taking the three pills four times a day instead of three. The specialist was very happy with the improvement she is able to see in Ana and so are we! Hopefully keeping the medication in her system throughout the 24 hour period will improve her symptoms even more. We are going to have to return to Atlanta in the near future to see a pediatric GI specialist, but I am not sure when that will be. To top off all of this good news, Ana has gained 4 pounds!!!!! That is a huge gain for her! Thank you so much for praying for our little girl!

Lastly, Ana's baptism is this Sunday. She is so excited about this next step in her walk with Christ! I know a website doesn't take the place of a personal invitation very well, but please consider it one. You are all personally invited to see this special occasion in our daughter's life. If you want to know more about her spiritual journey I encourage you to read about it here.

This was taken tonight when I tucked her into bed.

Goodnight!

BAPTISM!!!

this is ana. i am happy i am getting baptized this Sunday! i hope you are all coming. it is at community bible church. it is at 638 paris island gateway in beaufort, sc. i will be baptized at 11:00 am sharp so don't be late. i hope you enjoy my church. the sermons are good and pastor broggi teaches you how to get saved. bye.