Thursday, March 11, 2010

Prayers for Ana...

Ana is having a very bad week. She is impacted, again, and has had to undergo several enemas over the last two days. We have done 5 and have 4 more to do by Friday. We already see an improvement, but these types of enemas are very hard on her. Please say a special prayer for her today. Pray that the x-ray on Friday is clean!

God has given me strength I never thought possible. Ana is a very strong little girl... but I never have viewed myself as strong. I take each day as it comes, moment by moment. I try to never look at the big picture for fear that I will be discouraged. Only God knows what this disease is going to do to her poor little body before she breathes her last breath... only God knows what the future holds for Ana... I just rest knowing that He will carry us both through... that as soon as she moves in with Him she will be cured... she will be made whole in the blink of an eye... no tubes... no enemas... no pain... no surgeries... no medications... no I.V. polls... no backpack! With all that she has been through this week, the only thing she complained about was missing Kid's Life and missing horseback riding... Ana is just a child, created by God, and that is one thing mitochondrial disease can not take away!



Monday, March 08, 2010

Good News!!!


We are very excited to announce that Ana is getting her central line removed in a week!!!! Happy! Happy! Happy! There are no other words to describe it! Ana's leg pain has been much better and much less frequent. Together we decided that if the pain gets worse and more frequent we will have to rely on strong pain medication as the Keppra doesn't seem to be doing the trick lately. We are praying the pain continues to get less and less frequent and eventually stops coming at all! Please pray this with us!

Her feedings are going slow as usual. She continues to depend on her backpack 24/7 for nutrition. Lately, her large bowel has been giving us some trouble, but we hope to get answers about that in the coming weeks. All-in-all things are going very well!!!

Please pray for the line removal next Thursday! Ana will be able to take a real bath for the first time in about a year! She is so excited... Almost as excited as she was when we got snow!!!

Saturday, February 06, 2010

God is good!

Ana has been so much better! Thank you for the prayers. Now that things are quiet again, I want to share some pictures with you all. Ana loves God with all of her heart, He is her number one. After Him comes her family, and after us comes horses. We don't know why she loves horses so much. Shey and I do not ride, and she had never been around them. When she was about two years old she just began to talk about them. She would point to them out the window of the car every time we left the house, "Mommy, there's my horse over there!" (Yes, we live next to horse pastures.) She was only interested in books that had pictures of them... not cartoon pictures, but real pictures. Her love for horses never stopped, so when she was around 4 years old I started investigating her options. She would pray for a horse every day and every night. It didn't take long before we found out about Heroes On Horseback. This program has been an answer to our prayers. The instructors, the volunteers, the staff, the environment... it is more than we ever imagined it would be. Ana talks about Larry, Laura, Nancy, and Peggy just about every day... and then there is the lady that wears the pretty red lipstick who helped at horse camp last summer... these people have made such an impact in her life. And finally the pony, "Blue Eyes," that she has ridden since she started Heroes... this has truly been a therapeutic experience for Ana... nothing puts a smile on her face like hearing the name "Blue Eyes"... whether she is in pain, sick, in the hospital, at the doctor's office, or just feeling down...



Thursday, February 04, 2010

Pray for Ana...

Ana is having a rough night. She needs your prayers. Her legs have been hurting since about 9:15PM. We gave her I.V. medication to help and she fell asleep. The pain keeps coming and going... and she has now been screaming and crying off and on for three hours. Pray for her...

Sunday, January 24, 2010

Heading home!

Ana did great with her enema last night and she is tolerating all of her feeds! She will get another x-ray this morning and then we get to go home! I will update later this week after her appointment on Wednesday. Thank you for the prayers!

Saturday, January 23, 2010

Surgery update...

Ana is finally out of recovery. They are not sure that the stool was the problem, but we will see how tonight's enema goes. She was in recovery for 4 hours because of her blood pressure, but she is doing great now. She is begging to go to the playroom... I think she is feeling better... Thank you for the prayers. I will update as we know more.
God Is Faithful!

Surgery

Ana is currently in surgery being disimpacted. Please say a prayer for her and for her doctor. I will update when we know more.

Trip number 2!

Well, it isn't even February and we are on our second trip to MUSC. Ana has a fecal impaction. The plan for tonight is to keep her NPO and maintain her sugars with I.V. fluid. They are going to disimpact her tomorrow under anesthesia. I will update in the morning when we know more. Please keep her in your prayers... this has been a trying 2 days for her.

Thursday, January 14, 2010

Happy New Year & Happy Birthday Ana Maria!!

And to think they (the perinatologists) said she was brain dead... they said her lungs wouldn't mature and she wouldn't be able to breathe... they said she would most likely be a vegetable... they said she would be blind and deaf... they said that abortion was the only humane option... We said NO! NO! NO! We were not Christians at the time, but we knew there was a creator... a creator who would determine her life and her death. We knew that it was not our decision to make. You see, during my pregnancy I had an infection that is labeled as the "silent killer." It is called cytomegalovirus or CMV. CMV can be deadly if a person is infected for the first time during pregnancy and that is what happened to me. There were visible signs on ultrasound of problems and the amniocentesis verified her lung immaturity before birth... for those of you who know about the test, Ana's L/S ratio was 1.8... not good. They decided to go ahead with a c-section at 37 weeks and oh how surprised they were!... Ana was not only breathing, she was screaming... she was fighting. Further testing showed that my placenta was negative for CMV and so was Ana! What a miracle!!! The problems that Ana now has are in no relation to the infection I had during pregnancy. The problems from mitochondrial disease did not surface until a little later, and they have gotten worse over time.
Yes, Ana Maria does have a disease without a cure, but she also has life! Ana is the most caring little 6 year old I know. She has a heart for the Lord... she has taught us so much. She loves people and she is constantly telling them about Jesus or asking us to tell them about Jesus. She loves horses... she loves everything about them. She knows her ABC's, 30+ Bible verses, the books of the Bible, and how to add. In the past few weeks she has started reading. She always has a smile on her face. She started the new year with a UTI/bladder infection and then an emergency trip to MUSC this past Sunday because her button got ripped out, but she didn't complain... nope, not once! How does she do it? How does she tote that bag around all day? How does she handle all of the meds? How does she wear those hard plastic braces? How does she handle an enema every single day? I can tell you, because she told me how. She told me, "God might not make me better for a reason." She knows that God has a reason... she doesn't know the reason, but she knows there is one. She also told me, "Jesus didn't come down off the cross during the crucifixion for a reason. He died so we could be forgiven and live forever." She told me all of this 3 months before her 4th birthday... at the tender age of 3, she understood that Christ died voluntarily so that we could have eternal life! Wow... Ana is a miracle... One of God's wonderful creations! Her life was the preparation for my salvation. God was showing me who He was... He was showing me what He is capable of... because of her disability I was searching for answers... I knew something in my life was missing... God sent someone into my life who took me to CBC... He orchestrated it perfectly in His perfect timing! At CBC I received a clear explanation of the Gospel and it is there that I accepted Christ as my personal Savior!

Ana's favorite scripture:

14 "As Moses lifted up the serpent in the wilderness,
even so must the Son of Man be lifted up;
15 so that whoever believes will in Him have eternal life.
16 "For God so loved the world, that He gave His only begotten Son, that whoever believes in Him shall not perish, but have eternal life.

John 3:14-16


Happy 6th Birthday Oobie!!!


One of my favorites:

1 As He passed by, He saw a man blind from birth.
2 And His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he would be born blind?"
3 Jesus answered, "It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.
John 9:1-3