Help Cure Ana Maria

MItochondrial Disease Awareness Week 2011

noreply@blogger.com (Emmy) — Tue, 20 Sep 2011 01:52:00 +0000

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

noreply@blogger.com (Emmy) — Mon, 19 Sep 2011 02:54:00 +0000

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...

noreply@blogger.com (Emmy) — Thu, 14 Jul 2011 03:56:00 +0000

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 Eith ene'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

noreply@blogger.com (Emmy) — Mon, 11 Jul 2011 04:55:00 +0000

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!

noreply@blogger.com (Emmy) — Fri, 01 Jul 2011 00:28:00 +0000

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...

noreply@blogger.com (Emmy) — Fri, 24 Jun 2011 01:26:00 +0000

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!!!

noreply@blogger.com (Emmy) — Tue, 21 Jun 2011 00:41:00 +0000

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.

Praying for friends...

noreply@blogger.com (Emmy) — Tue, 14 Jun 2011 02:19:00 +0000

When you live with a child who has a rare... not really "rare"... disease, you meet lots of people and develop lots of internet friends. These friends play a huge part in our lives... they provide us with support (emotional & financial), prayers, information, and even housing when we travel. Some of them I have met face-to-face and some... through the phone, forums, virtual groups, personal websites, and blogs. No matter how often or how little we communicate... they are my "special" friends... our bonds are deep whether we talk everyday or only read each others updates on facebook. I love these ladies and I love their little ones. I pray for these ladies, their husbands, and their little ones. It breaks my heart every time I hear that mitochondrial disease has won the earthly battle. Yet, I am so thankful the pain is gone and these precious children can rest in their eternal homes with our Lord and Savior. This post is for Jessica, Sean, Gabriel, and sweet Eithene. I love you guys and pray for peace and comfort during this time. I pray that God would miraculously heal Eithene here or in heaven. I pray that he would give you the peace that surpasses ALL understanding.

Click here to meet Eithene and get updates... pray for her, please.

Come to Me, all who are weary and heavy-laden, and I will give you rest.

Take My yoke upon you and learn from Me, for I am gentle and humble in heart,

and YOU WILL FIND REST FOR YOUR SOULS.

Matthew 11:28-29

Happy Birthday Sweet Eithene Rose!

May God Bless you and keep you always in His tender, loving care!

Make an on-line slide show at www.OneTrueMedia.com

The Cost

noreply@blogger.com (Emmy) — Tue, 07 Jun 2011 16:18:00 +0000

I have been gathering information and planning for this upcoming Cincinnati trip. The Children's Hospital has made our reservations and the hotel bill will be $678.08 (this includes all hospital discounts). The fuel cost calculator estimates $337.02 for gas there and back. I am estimating another $60.00 per day for food, totaling at $540.00. The grand total for hotel, gas, and food comes to $1,555.10! Wow... we are expecting a miracle here! Every little bit counts, so please prayerfully consider helping us in any way possible! We can't do it without your help! Simply click on the "Chip In!" button below to give. If you have a website, please consider copying this widget and putting it on your site!

(For details about this trip please read the previous post.)

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)

Travel Update

noreply@blogger.com (Emmy) — Sat, 04 Jun 2011 03:20:00 +0000

I am having a very hard time keeping up with everything and blogging, so blogging has been on the back burner. I will try to do better...

Our trip to Pittsburgh was quick and so worth it! Sage is no longer allergic to rice!!! She doesn't much like the taste of rice by itself, but she can now have cereals, bread, and other things with rice in them! So happy about this!

As for Ana Maria's update... I am so excited to report that the new medication, to increase her Cerebral Folate, seems to be helping in many areas!!! Ana is eating more than ever by mouth.. each day is different than the other, but overall she is eating more... what that means?... we don't know just yet. She is also showing sign of improvement in the neurogenic bladder area... she is going potty without prompts. As far as the bowels, we aren't sure what she is capable of, but it is too risky to test it out without the guidance of a colorectal specialist. Her leg pain has improved beyond what we thought possible! You may wonder if she still has pain, and the answer is yes... however, the frequency and intensity (for the most part) are far less than ever before. So, with all that being said, you are probably wondering what exactly all this means... and I have no idea. I have spoken to the specialists in Atlanta and in Cincinnati and we have all come up with some "next steps" of sorts.

First (step 1), we will be heading to Atlanta for follow-up. While Ana has had a tremendous amount of improvement, all of her pain is not gone. She is on the maximum dose of the medication and without another lumbar puncture... her dose cannot be increased anymore. So, they will decide at her follow-up if it is worth doing another LP. The goal is to eliminate the pain and wean her off of the medication that helps to control the neuropathy and seizures. Why? Because the seizure med further lowers the cerebral folate... I know... so confusing! The ideal situation would be to get her cerebral folate level to a normal range and prevent further neurological symptoms.

Next (step 2), we are headed to Cincinnati. Plain and simple... we want to know if the medication has improved bowel function. Ana has had over 1,200 enemas, and she wants a break. Will she ever get one? Maybe not. Is it worth a try? Absolutely! (Anyone who has ever had a 500ml saline enema would agree!) IF the medication has reversed the neuropathy of the colon and large intestine then a break is what she will get! Will this mean no more enemas ever? No, probably not... Ana has Mitochondrial Disease... and we understand things are never going to work perfectly here... in this world... with this disease. Now, you are probably wondering, "why Cincinnati?" Well, this is her colorectal team, and quite frankly, there is no other bowel management program like it. We will be there for 9 days. Each day Ana will get an abdominal x-ray to see if her colon and bowels contain stool. These x-rays will tell her team of doctors if things are working properly once enemas are stopped. If not... we come home on enemas. If so... she gets an "enema break." How long? We just don't know. With Mitochondrial Disease there are ups & downs... how long do they last?... no one really knows. We have to take it one day at a time. While we are in Cincinnati Ana Maria will also undergo some long overdo urology testing... we expect good news on the urology side of things for sure!

Next (step 3), we won't know until we complete steps 1 & 2.

Here is Ana's upcoming schedule:

June 21st -> Atlanta, Mito Dr.

June 29th -> Savannah, Cardiology (Annual follow-up.)

July 7th - 16th -> Cincinnati, Colorectal/Urology

Summer has become very busy very fast! I pray things go smoothly and I pray that Ana will find peace in whatever the outcome is. Please pray with us. Prayer is so powerful! Please pray over these upcoming trips and please pray for God to provide financially. It is extremely costly to travel. Please prayerfully consider donating to help Ana. Donations can be made on this page through the "Donate Now" button at the top of the column on the right. They can also be made at any Wachovia Bank to the Ana Maria Bennett Special Needs Trust Fund. Gas gift cards and food gift cards are also extremely helpful when traveling.

On the road again...

noreply@blogger.com (Emmy) — Wed, 06 Apr 2011 02:16:00 +0000

This will have to be a very quick update, because 4:00 AM is going to be here before I know it! Things are going well for the most part. Sage and Ana just got over pneumonia, so things have been crazy busy!

Ana is doing very well on the new medication and had her dose increased again last week. Her leg pain has been off and on, but mostly off! :)

Tomorrow we leave for Pittsburgh. Sage's food trial is scheduled for Thursday morning at 8:00 AM. I am not feeling very confident that she has outgrown her allergy to rice, but we shall know soon enough. We are going to try and record the trial so those interested in seeing the severity of it can. Most people are unfamiliar with FPIES and some even skeptical about it's existence. If Sage still has it, I have decided to dedicate time to raising awareness for this rare allergy.

Thursday's Schedule:

8 AM: Appointment with Dr. S

8:30 AM: I.V. Placement

9 AM: Sage gets to eat RICE... all sorts of RICE!

Then we wait!

If she has no reaction, we are done at 4 PM.

If she reacts they will rush her to the emergency room for treatment.

Time for our prayer warriors to get started! Pray for safe travels Wednesday and Friday. *Pray that we get a room at the Ronald McDonald House.* We would love to have you guys praying throughout the day Thursday as she goes through the trial. . . hopefully the schedule will help with specific needs. Pray that if Sage does react, it will not be life threatening. . . she has had three very severe reactions in the past. Pray for the Dr.'s wisdom in caring for her. Pray that Ana doesn't pick up any illnesses while we are out-of-town. Lastly, pray that we might meet someone to share Christ with while we are there.

Let's Pray

noreply@blogger.com (Emmy) — Sat, 19 Mar 2011 04:19:00 +0000

Sometimes I look at my life with my sick daughter and I think. . . "This is too much to handle.". . . "How will I ever keep up with everything?". . . Can I really administer 365 enemas this year?. . . Fix 730 bags of formula?. . . Pull up and give 730 doses of medication by December 31st?. . . Take multiple trips out-of-town?. . . Rub hurting legs several hours a night?. . . Tell her "everything is going to be ok" day after day?

Sometime I get down. . . it's only natural. . . she is my baby and I love her. Things weren't suppose to be this way. I am human. . . I am a mommy. . . I am created in the image of God. . . I feel emotion.

God uses these times to show me I CAN. . . to show me I WILL. . . and He will help me. . . He will help us. I am so thankful for my children. I am so thankful for my husband. I am so thankful for salvation. I am so thankful for every minute we have together. . . good & bad. God's love is so amazing.

It is so easy to take things for granted. . . so easy to focus on the bad and miss the good. Tonight my heart aches for the people of Japan.

Dear God,

Thank you for my family. . . my husband and my beautiful children. Thank you for our home, our church, and our community. Thank you for the courage and strength you give me to get through each day. Thank you for answering our prayers concerning Ana's leg pain the other night.

Lord, tonight I pray for the people of Japan. I pray that you give them comfort and peace in the days to come. I pray that they seek you. I pray for the many people who have lost loved ones. I ask you to give the people of Japan the strength to persevere and overcome this tragedy.

In the name of Jesus Christ, Amen

New Diagnosis with a Treatment

noreply@blogger.com (Emmy) — Tue, 15 Mar 2011 19:27:00 +0000

Being cute!!!

Cleo & Rosie

So many people have been asking about our Atlanta trip and things have been so busy I haven't had a chance to update. So sorry everyone had to wait.

Ana had a great appointment and didn't even cry during the blood draw! We are so proud of her!

Ana has a new diagnosis, Cerebral Folate Deficiency. This is good news in that it is treatable! CFD could be the cause of her leg pain and neuropathy. She was started on a low dose of folinic acid and they are increasing as needed until we see a change. Once there is no more leg pain, they will attempt to wean the keppra and see what happens. We are so excited about this. . . to think she could be pain free. . . WOW! During the course of this treatment she has experienced burning in her legs which could be a sign that the nerves are trying to repair themselves! The erythromelalgia (red, warm, painful hands and feet) that she had started having is not happening as often. . . yet another blessing! Please pray this is the answer to these many neurological problems! I am also praying this will help the neuropathy of the bowel and bladder!

We are getting ready for our trip to Pittsburgh on the 30th of this month and praying there will be vacancy at the Ronald McDonald house and God will provide sufficient funds for gas and food. Also on the agenda is the Cincinnati trip on May 24th. . . praying the same prayer for this trip as well. Please pray for these needs with us. . . the power of prayer is amazing! God has always provided for our needs.

I also wanted to let Ana's friends and prayer warriors know that Ana has been chosen to receive a "Love Quilt!" You can visit her special page here. We are very excited about this. . . it is a secret, so don't mention it around Ana! I can't wait to see her face when it comes!

Lastly, I will be scheduling her baptism next week. Once I have the date I will post it. All are invited to this special event!

Painting her AWANA Grand Prix car!

Atlanta Bound

noreply@blogger.com (Emmy) — Sun, 30 Jan 2011 05:22:00 +0000

I hope you enjoy the post below! Ana had a wonderful birthday and she wanted to share it with you all.

Tomorrow we are Atlanta bound. We are going to see Ana's mito specialist for a follow-up. Things are going pretty well. Ana has been having some issues with her hands and feet turning a deep red color and getting very warm. Her neurologist is thinking it may be due to autonomic issues, but we just don't know yet. I am hoping to know more after Monday's appointment. Please pray for safe travel and a good report from the doctor.

Also, we are in need of prayer for our upcoming trips. Financial prayers... these trips are costly, especially with gas prices going up. We were unable to do Cincinnati and Pittsburgh in one trip. This was a disappointment, but we know the Lord has a plan... and we know He will provide a way. Sage is going to have to go to Pittsburgh in March and Ana's Cincinnati follow-ups are May 25th- May 27th. So, please pray about this with us. And, please prayerfully consider donating to these trips on Ana's "Donation" page.

A Day To Remember

noreply@blogger.com (Emmy) — Sun, 30 Jan 2011 04:58:00 +0000

I'm thinking... Paulie's...

Yes, Paulie's... that always puts a smile on my face!

One bite of pizza fills me up! Yummm...

and then, the best part...

ZEPLIES!!! I can eat a whole one!

(Zeplies are the size of a doughnut hole.)

And don't forget the cake!

(No, I don't eat that either... nope, not even cake.)

You are not going to believe this!

(I have been asking for months!)

My very own Gamecock uniform!

A day in the life of Ana. This was the story of her birthday.

Happy Birthday Sweet Girl

noreply@blogger.com (Emmy) — Fri, 14 Jan 2011 04:39:00 +0000

You know... I am amazed every day... amazed at how powerful prayer is. I want to thank each and every one of you who pray for our Ana. It is because of your faithfulness and God's mercy that she is with us today. Her life is my testimony... her smile is a beautiful reflection of God's grace... so sweet.

Ana realized she was a lost sheep very early in her life and the Lord found her so fast. She knows that the moment she dies she lives... in heaven... She knows that Christ died that she might have life eternally... His death on the cross paid the price for her sin and she knows it... He died so that she wouldn't have to... He died so that she could live forever with Him... to hear her talk about heaven and God is amazing.

Last year at this time she was sad. Not because of hospital stays and feeding tubes... not because of carrying a backpack 24/7... not because of mitochondrial disease, she was sad because she couldn't be baptized. Ana had a central line (like an I.V.) in her chest and she couldn't get wet... she couldn't get baptized... She knows that baptism doesn't save... she knew it wouldn't get her to heaven... Only Jesus Christ could do that. Ana wanted to be obedient. She simply wanted to honor God and obey. Jesus taught that a Christian must FIRST believe and THEN be baptized. Baptism is a mere symbol of ones relationship with Christ... One doesn't wear a wedding band before marriage and one doesn't get baptized before believing.

The only thing she could do about it was pray. She prayed night and day... day and night... that the leg pain would subside and the central line would be removed long enough for her to be baptized. It was so sweet... her faith... she asked believing... and God answered. In July the line was removed... in November she met with Pastor Broggi and went public with her decision... and in the coming weeks she will be baptized! She is SO EXCITED! It is all she talks about... all she thinks about... all she cares about. I am so happy for her... so happy her desire to please God is so deep. What a special day it will be... and yes, you are all invited! I will post the time and date next week.

And to think they (the doctors) said she wouldn't live past birth... what were they thinking? God determines life... not doctors... and not diseases...

(Click on the picture for a better look!)

Happy New Year!

noreply@blogger.com (Emmy) — Tue, 11 Jan 2011 16:58:00 +0000

Ana has lost all 4 front teeth now!

We are truly blessed by Ana's medical status! Things have been so quiet around here lately. Praying 2011 is a nice quiet year for our little miracle girl.

We have been following up with the local GI and Neurology teams and things are very stable. Her leg pain has been minimal, however, there have been some issues with feeling in them. We have had a few complaints about her legs feeling rubbery and heavy, but this is most likely just nerve issues from the disease. Ana's feeds are going perfect as well as her enemas! This month we will travel to Atlanta for follow-up care with her mito specialist... This should be a very basic follow-up appointment.

Right now we are in the process of scheduling follow-up appointments for Ana in Cincinnati and Sage in Pittsburgh. Ana will have to follow-up with the colorectal team and urology team this year. We were hoping to get urology care switched to our local children's hospital, but that has not worked out. Every appointment has had to be cancelled due to an error with the scheduling... and now Ana is months behind on her urology tests. Sage has to make a trip to Pittsburgh to see Dr. S for her rare food allergy. She has an allergy to rice, called Food Protein Induced Enterocolitis Syndrome or FPIES. We have not been able to find a doctor who is willing to do her trial as rice typically puts her into shock. Dr. S in Pittsburgh agreed to do it after her 4th birthday and the time has come. Our plan is to take both girls in one trip. I will update as I have more details. Please be in prayer about these trips! A donation page has been set up... pray we raise the money needed to get Ana the care she needs.

That is all for now! I hope you all enjoy the new and improved site! Please take a look around and let us know what you think!

~Meet Sage!~

From our family to yours, "Happy New Year!"

update at last...

noreply@blogger.com (Emmy) — Mon, 18 Oct 2010 10:59:00 +0000

Wow... it has been a very long time... thank you to those who faithfully come back to check on Ana through her blog and those who dedicate time to prayer for our little girl.
Ana is doing very well! She is dealing with the occasional leg pain, but it has not been as long lasting as in the past. The new regimen of meds seems to be working well.

She is loving school so far this year... and has exceeded our expectation in all areas! Her determination amazes me. She is oh so happy to be back at AWANA, also!

Accomplishments in the first 9 weeks of 1st grade:

Learned to read!
Finished her Sparks book for AWANA!
Aside from AWANA, she has memorized Psalm 1 & Psalm 8... now she is working on the Sermon on the Mount!
Can write an entire verse without fatiguing or switching hands!
Has addition facts memorized and can solve for the unknown!

This list could go on, but these are the things that really stick out to me... a child who we were told wouldn't make it... and we were told that if she did she would be brain dead or deaf & blind??? God is so amazing and so much bigger than we could ever imagine.

Breast Cancer Awareness

noreply@blogger.com (Emmy) — Tue, 05 Oct 2010 22:41:00 +0000

This year has come with a mountain of grief and one too many deaths... healthy friends with sick children... sick friends with healthy children... and tragic accidents which ended lives way too soon for my earthly mind to understand... so maybe you are wondering why on earth Ana's blog is pink???... Well, not too long ago a dear friend, a sister in Christ, was diagnosed with breast cancer. She is still fighting the battle with God on her side and winning! This week Ana's blog will be pink for KELLY! Kelly, her husband Ted, and her three sweet children...

Kelly & Ted,

Thank you for all of your prayers for our sweet Ana.

You are in our prayers daily.

Thank you for helping us raise awareness for Mitochondrial Disease

and know that we will help you in any way we can.

Love,

Ana's Family

Mitochondrial Disease

noreply@blogger.com (Emmy) — Tue, 21 Sep 2010 12:22:00 +0000

Galatians 6:2

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

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 19th to September 25th!

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!

Mitochondrial Disease Awareness Week

noreply@blogger.com (Emmy) — Sun, 19 Sep 2010 04:54:00 +0000

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 19th through September 25th! Lets see if we can turn facebook green!

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 19th to September 25th!

A month already???

noreply@blogger.com (Emmy) — Fri, 10 Sep 2010 08:05:00 +0000

I can't believe it as been a month since my last post! So much has changed and so much has stayed the same. Ana had a wonderful August. I think the whole month she only had two minor bouts of pain. The brain MRI went perfect. Ana was so brave! The results came back normal. There is still some confusion as to her organic acids, and what "high" might mean or not mean. She did see the GI doctor on August 31st. He wants to treat some of her symptoms with Prevacid. I have mixed feelings and am still praying over the matter.

August was a big month for us. Ana, Emily, Baden, and Isabelle started school! We homeschool all of them. Ana is doing so well. She battles the tremors in her hands with every ounce of strength she has in her. I do pray she doesn't give up this year as things progress and become more of a challenge. Homeschooling would be the biggest reason why I haven't updated. I pledged to dedicate all of my free time to making that run smoothly and alot of things got put on the "back burner." We are finishing up week four and everyone is comfortable with the new routine.

As for September, it started out as smooth as August ended. We have made all of the preparations for baby Sage's 4th birthday! I cannot believe she is going to be 4... seems like just yesterday Ana was turning 4... oh! how time flies!

We are now in our second week of September and things aren't going so well. It is time to get our prayer warriors involved. Daddy brought a cold home from work on Friday and things have gone downhill since. Isabelle was the first to catch it, and now Ana is struggling. The leg pain has been horrible since Thursday morning and we are having to give lots of extra medicine for it. Her breathing sounds rough and her cough is terrible. As for the present, she is still tolerating her tube feeds. If her feeds become an issue or the leg pain cannot be controlled, she will have to go to the hospital. She is very upset about all of this. When she is awake, she is crying that she doesn't want to go to the hospital... she knows things aren't looking favorable right now. It is 4AM and I just gave another round of meds for the pain. I am planning on taking her to the pediatrician this morning to make sure we are not overlooking anything and get a current weight as a reference point incase she gets sicker. I am so disappointed about this. She did not get one virus last year, not one. It is times like this that the central line would have been a blessing... but God has a plan... a plan that I have to trust... a plan that I do trust.

A gentle spirit. A kind soul. Ana started choir back this week and she is so excited. She got to move up to the "big" kid choir! In Sonrise Choir, they do scripture memory with Mrs. Broggi, and Ana loves it. Since Wednesday I have read her Psalm 1 at least 20 times. She doesn't let much time go by before she asks me to read it again. She wants it hidden in her heart so bad... she longs for it. Before bed she was really feeling bad... crying through the leg pain... and she still asked me to help her say Psalm 1 one more time before she fell asleep. How sweet is that?!?!

Please pray for her today. Pray for her right now as you finish reading this post. Thank you.

^{Psalm 1}

¹How blessed is the man who does not walk in the counsel of the wicked,

Nor stand in the path of sinners,

Nor sit in the seat of scoffers!

²But his delight is in the law of the LORD,

And in His law he meditates day and night.

³He will be like a tree firmly planted by streams of water,

Which yields its fruit in its season

And its leaf does not wither;

And in whatever he does, he prospers.

⁴The wicked are not so,

But they are like chaff which the wind drives away.

⁵Therefore the wicked will not stand in the judgment,

Nor sinners in the assembly of the righteous.

⁶For the LORD knows the way of the righteous,

But the way of the wicked will perish.

Anchor of my soul

noreply@blogger.com (Emmy) — Wed, 11 Aug 2010 03:13:00 +0000

Hebrews 6:19

...abide in Him, so that when He appears, we may have confidence and not shrink away from Him in shame at His coming. 1 John 2:28

And He said to him, "You shall love the Lord your God with all your heart, and with all your soul, and with all your mind." Matthew 22:37

The last few weeks have been a journey. Ana is doing well, but there was a little issue up in the air. On July 15th when Ana had the MRI's, there was some miscommunication and the brain MRI was not done. This was a big deal, because MRI=anesthesia and anesthesia is very risky with Ana. It was decided on July 16th to schedule a follow-up on August 10th (today) to discuss the next step. After further evaluation in the neurology clinic, it was decided that the MRI of the brain could not be avoided. Ana has tremors in her hands and the doctors need a baseline of her brain in the case that the tremors get worse. After lengthy discussion we agreed to the brain MRI only if we could try it without anesthesia. The MRI is scheduled for this Friday at 7:30AM. Please pray for God to give her comfort and peace. We are praying she will not have any anxiety on Friday and will lay still for the test to be done.

We also got the results of the Lumbar Puncture today. Everything looks ok at the moment. One of the amino acids was high and her folate level was on the lower end of normal... what does this mean? Nothing at the moment, but they will repeat the Lumbar Puncture in a year to recheck those levels.

There is still some concern over three of her urine organic acids being high and they rechecked those levels today... I promise to let you all know more when we get those results. As of right now we don't know much about what this all might mean. We do know it could mean there is a liver and/or kidney issue, but we will wait to see what these tests show.

Thank you all for your support. Your prayers are worth more than you know... we serve an awesome God. What a blessing to live in the day we live... a day where tube feeding is possible and medicines are readily available...

Going Home!!!

noreply@blogger.com (Emmy) — Fri, 23 Jul 2010 11:49:00 +0000

The caffeine did the trick... she had a little trouble coming off of it, but the headaches are gone! They did have to start TPN, but they were able to put it through the I.V. Ana wasn't happy because it burned, but she got use to it and we were able to avoid a central line. Last night she got up to full feeds of 55cc/hour and the TPN was stopped. She is completely back to her old self and begging to go home. We will be on our way around 10AM! A special thank you to all of our prayer warriors... Ana is better because God faithfully answered our prayers.

The last three days...

noreply@blogger.com (Emmy) — Wed, 21 Jul 2010 01:50:00 +0000

Sunday the headaches and backaches were almost unbearable... she was given morphine to stop the pain. Monday the backache subsided, but the headaches were still happening full force. Monday afternoon it was decided that Ana would be given three 400mg doses of caffeine citrate. This along with morphine did the trick. Today Ana has battled with neuropathic leg pain. The last dose of caffeine was at 4PM today and feeds were started back. After about 3 hours on feeds at 10cc's/hour they bumped them up to 20cc's/hour... an hour later... she was sick and retching. We then had to vent the g-tube and discovered that none of the feeds had been absorbed. Feeds were stopped for a couple of hours and restarted tonight at 8PM. Ana needs everyone to pray that she tolerates her tube feeds... we are in a bad place with nutrition. Ana has not had any feeds since Friday afternoon! She will not be able to go much longer without feeds... they will have to start TPN which will require another central line... pray that this dose not happen.
Once the caffeine wears off in the morning we will know if the headaches are truly gone. If they are not gone, the doctors will have to do a blood patch under anesthesia to stop the CSF leak. Please pray that the caffeine worked.
Sorry this update is so scattered, I am very tired and worried about what the nest few days hold. Pray for my strength and Shey's strength... Pray for our other children to have patience through this whole process... Pray for Ana...