Long night...

Ana had a horrible night last night... about 8 hours of screaming with neuropathic pain in her legs. Her physical therapist came this morning to assess her and explained that her pain was from lumbar 4 and lumbar 5 nerve roots. This was interesting as no one has ever gone into detail with us about the source of the pain. She also noted that there was more weakness than usual in the right leg, which was the worse of the two last night. After speaking with the doctors, we all decided that a meeting with the pain management team while inpatient this week would be our best option. Episodes like last night are very rare, but must be treated to give her relief. The doctors also decided an MRI of the lumbar spine would be a good idea to cover the bases. We are praying they find something that can be fixed; if they do not find anything, then the neuropathy is from muscle wasting and there is nothing we can do other than manage the pain. Please pray for Ana and the doctors... pray for her comfort and that the Lord gives the doctors wisdom to treat her pain.

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The 3rd Annual Help Cure Ana Maria Fundraiser

to benefit Heroes on Horseback

Featuring: Vessel of Honour & Soul

May 8, 2010 from 11AM-3PM

@ the Hwy 21 Drive-In

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!

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!!!

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...

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...

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!

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.