Christmas Time Is Here!

Well, here we are in the mist of the Christmas season. Ana is ok, but still battling the leg pain. I have put in a call to the neurologist and we will wait to hear the next step. Last night it started around 8PM, got most unbearable at 2:30AM and ended at 4AM. I wish I could help her... take the pain for her... I hate this disease.
Our trip to Cincinnati has been scheduled for January 19th through January 24th. Cincinnati is Ana's only hope for battling this disease. They have so much experience and are unwilling to give up hope. As long as Ana is here, they will continue to fight for her... treating every symptom that is treatable. Please pray for this team of specialists... pray for their wisdom and for their families during this Christmas season. They mean so much to us. Our local doctors are ready to "throw in the towel"... Ana has way too much life left in her to "throw in the towel!" It is not time to give up and I know that the Lord will let me know when the time comes. I rest in peace and comfort knowing that He is carrying us through this. This holiday gives us more comfort than any other. To know that God gave us this great gift... a Savior! Let's not loose sight of how great this truly is. Knowing that God sent us a Savior so that we can live with Him for all eternity is what gives us the most comfort. If Ana is not cured here on this earth, we know without doubt that she will be cured there in Heaven. This life is so short compared to our eternal life with the Lord our God!
Prayer...Thank God for His gift, a Savior... pray for Ana's will to keep fighting... pray for the doctor's who treat her... pray for our dependence on the Lord through all of this... pray for peace... pray for comfort... pray for the Lord to end the pain... pray for all those families dealing with this terrible disease... pray for complete healing...
This week I will read Job... read it with me... if you have already read it, read it again... I challenge you.

Long awaited update...

I hope all is well with everyone. Sorry for the lack of updates... the time seems to get away from me. Within the last week, 4 of our 5 children have had a virus. It started with Baden, then Isabelle, Ana, and finally little Sage. Ana had a much milder case than the other 3 and that was a blessing! Sage is now on her 4th antibiotic since September first and I am thinking this will be another fall and winter full of infection. Therapy last week and our meeting with the Beaufort County Special Ed Coordinator had to be cancelled due to illness. The meeting has been rescheduled for next Monday. Ana has been on Lyrica for one week and we have only had two mild leg pain episodes. Her gait has continued to be wide and floppy and that is to be expected with the neuropathy. The increased calories seem to be helping... Ana has gained half a pound since the last update!! Today we had our first appointment with the local urologist. This urologist was so wonderful and willing to help. He will stay in contact with Dr. A in Cincy and will follow Ana on a monthly basis. He agreed to work with Dr. A and agreed with all of his recommended testing! What an answered prayer! He did recommend that we start doing two hour potty breaks due to the accidents and infections we have been dealing with. We will work on this new schedule and pray that it fixes the current issues. I think that is it for the medical updates.
On another note, I have tons of paper work to finish before Wednesday. We found an organization that will fly us to and from Cincinnati!!! Being that both girls are being seen there, they will allow both of us to fly with a $100.00 donation! Yet another answered prayer!! Now we only have to have hotel and food money!!! I just have to get through the paperwork times 2! Then there is the disability medicaid renewal application and it is about 20 pages long. And lastly there are the quarterly progress reports that are due by next Sunday. That's three report cards and summaries that I have to have done before Wednesday. So, tomorrow the kids will watch Christmas movies and away I will type. Wednesday, I will do my traditional baking in preparation for a Thanksgiving Feast! This is also the day we get our Christmas tree! I can't believe it is already Thanksgiving. Shey and I have so much to be thankful for, the Lord has blessed us in so many ways...

And then there were two...

The kids starting "Operation Christmas Child"!

"Operation Christmas Child" Complete!

The last 11 days have been full of events. Ana's leg pain remains out of control and that has led us in a new direction. After many attempts to get in touch with her neurologist in Charleston, Dr. G, we ended up on the phone with his new partner, Dr. K. Dr. K has been more than a doctor this last week, he has been an answered prayer. Whenever we start praying for God to help us get to Cincinnati permanently, something miraculous happens here. Things don't happen by "chance"... God has a plan. Dr. K has moved to MUSC from The Kennedy Krieger Institute!!! This is the institute that Ana went to for feeding therapy in 2006. KKI has more than an intense feeding program... they also have a "state-of-the-art" multi disciplinary neurological program. Dr. K has lots of experience and is use to taking a multi disciplinary (lots of specialist working together toward a common goal) approach. He has been like a breath of fresh air. Dr. K has been reading Ana's chart, researching meds, and keeping in touch. He called Saturday night to discuss the things he has figured out so far and asked me to have him paged when we arrived in Charleston today. There we were in Charleston... with the top physical therapist at MUSC, our wonderful PT from Hilton Head, and Dr. K... Dr. K left clinic to come see Ana and get feedback from her therapists!!! Dr. K says that Ana's case is very complicated, but he is committed to helping her be pain free! Saturday, Ana started a new medicine called Lyrica. If Lyrica does not work out then everyone will decide together what to do next. We are very excited to have someone so involved in Ana's case and are asking for Ana's prayer warriors to pray for Dr. K at MUSC. Pray for God to help him help Ana.
The other issue we are dealing with is the weight issue. I increased Ana's calories this week in an effort to stop the weight loss. I will e-mail the motility specialist in the next couple of days if this doesn't work.
Enjoy the pictures and I will update soon! Below is Ana's new schedule.

NOVEMBER

• 20th- ST and PT & Meeting with Beaufort County Special Ed Coordinator
• 24th- Urology Appt in Savannah
• Sleep Study to be scheduled.
  

DECEMBER

• 3rd- Pulmonology Appt in Savannah
• 8th- Homebound PT Eval & ENT follow-up in Charleston
• 9th- GI Appt in Savannah
• 11th- Homebound Speech Eval & Special Ed Teacher Eval
• 25th- CHRISTMAS!

JANUARY

• 2nd- Neurology Appt in Charleston
• 6th- IEP meeting for homebound services
• 7th- Neurology Appt in Atlanta
• 23rd- Cincinnati follow-ups

Exciting news!!

A picture that reminds me how small we are in this great world that God created.

Ana after her appt with the eye doctor in Charleston.

Everything was normal! Praise God!

Last Saturday, my mom took us and our extended family to the fair!!!

All of the kids at the fair!

Ana posing on a horse at the fair! Ana ready for bed in her brace.

It has been a long week! Ana's left foot continues to turn in and drop due to weakness and her muscles continue to tighten. The Physical Therapist has recommended that we let her sleep in the left brace. Ana is not very happy about this, but is willing to try it if it means less wheelchair time. A couple more appointments have been made for the coming weeks. Ana will see a local Urologist who will work closely with Dr. Alam in Cincinnati. She is in need of a bladder scan to check for urine retention. Secondly, Ana will be evaluated by the head of pediatric physical therapy at MUSC in 1 week. Her therapist from Hilton Head will attend this evaluation in an effort to learn how to better care for Ana's physical needs and determine if she needs some type of walker. Let's see... umm... oh yes, Ana did get a mercury free flu vaccine this week and she did very well with it. After having the flu last year, we learned our lesson. Lastly, Ana's SleepSafe II Hi/Lo bed has been sent into insurance for precertification... we need everyone to be in prayer about this. Below I will post Ana's schedule for prayer... we need everyone praying about these appointments, not only for Ana, but also for the doctors and medical professionals treating her. We also need you guys praying for Ana's health... pray for her legs... pray for her bladder & kidneys... pray for our financial ability to get her to all of these upcoming appointments... pray for God to completely heal her!

I almost forgot the exciting news!! The NIH (National Institute of Health) is conducting a research study on the diagnosis and treatment of PRIMARY MITOCHONDRIAL DISEASE!!!!! This is the first step in government funding for research of PRIMARY mito!!! Thank you NIH for considering this a priority! We need our prayer warriors to pray about our participation in this study.

NOVEMBER

• 10th- Appt with ENT in Charleston
• 11th- Physical and Speech Therapy on HHI
• 13th- Meeting with the school district about services in home
• 14th- Appt with Urologist (will probably change)
• 17th- Physical Therapy Eval in Charleston
• Sleep Study will be this month

DECEMBER

• 3rd- Appt with Pulmonologist in Savannah
• 9th- Appt with Gastroenterologist in Savannah

JANUARY

• 3rd- Appt with Neurologist in Charleston
• 7th- Appt with Neurologist in Atlanta
• We will also have several appts in Cincinnati this month. I should have dates by the end of the week.

People often ask me how I do it or how I manage all of this and homeschool my other children. For those of you also wondering that, it is by faith, and faith alone. I take each minute that the Lord gives me and I use it with a thankful heart knowing that He didn't have to give it. Being able to "handle" all of this is something I have to pray about on a constant basis. I pray and ask believing that it will be given me, even before my prayer is answered. (Mark 11:24) I have complete faith that God will carry me through, me and Ana both. I know that all things that I ask in prayer, believing, I will receive. (Matthew 21:22) These are promises from God! If you would also like to know God personally, I encourage you to click on the link to the left, titled: "Want to know Ana's God personally?"

Answered Prayers...

Ana's heart is still very healthy!!! Thank you Dr. L for getting us in so quick! Ana has an "innocent" murmur that a lot of kids her age get. Her blood pressure is on the low end of normal, but not abnormally low. Dr. L will recheck her heart in 6 months because of all of the new neuropathy issues. Praise God! Ana was such a good girl today while they did the tests... I am very proud of her.
Sage woke up with a bleeding ear and has a terrible ear infection, so I need to go tend to her. I will update again soon! Thank you so much for your prayers... the Lord is answering them...

Prayers needed for tomorrow...

Well, it has been a long week... tomorrow is Ana's cardiology appointment. She has developed a heart murmur and low blood pressure. We pray the murmur is nothing to worry about and that the low blood pressure is due to medications. Ana seems to be having more bladder issues and will require some more testing. We are in touch with the doctors in Cincinnati and they are going to talk with our local physicians about what we need to do. Unfortunately cathing may start sooner than we had anticipated. Ana's leg pain is no longer under control and we are trying Cymbalta this week... this drug is very hard to get through the tube... very frustrating for me.
November is quickly filling with appointments and I will list them below. Please pray for Ana. This disease is so hard to manage and there is no way to stop it. We are working on getting palliative care (nursing care) in the home, on top of the personal care she already receives. I am so tired... and with the severe mood swings the days get longer and harder.

• 10/30- Cardiology Appointment (EKG & Echocardiogram)
• 11/03- Eye Appointment in Charleston
• 11/05- Pulmonology Appointment in Savannah
• 11/06- PT & ST in Hilton Head
• 11/10- ENT Appointment in Charleston & Audiology Appointment
• 11/13- Meeting with the school district about services available

***Along with these she will have another sleep study, an ambulatory EEG, a bladder scan, and a Physical Therapy evaluation in Charleston.***

The LORD an Abundant Helper.
1 Praise the LORD!Praise the LORD, O my soul! 2 I will praise the LORD while I live;I will sing praises to my God while I have my being. 3 Do not trust in princes,In mortal man, in whom there is no salvation. 4 His spirit departs, he returns to the earth;In that very day his thoughts perish. 5 How blessed is he whose help is the God of Jacob,Whose hope is in the LORD his God, 6 Who made heaven and earth,The sea and all that is in them;Who keeps faith forever; 7 Who executes justice for the oppressed;Who gives food to the hungry.The LORD sets the prisoners free. 8 The LORD opens the eyes of the blind;The LORD raises up those who are bowed down;The LORD loves the righteous; 9 The LORD protects the strangers;He supports the fatherless and the widow,But He thwarts the way of the wicked. 10 The LORD will reign forever,Your God, O Zion, to all generations.Praise the LORD!

PSALM 146

A long week...

Ana's big sister, Isabelle, lost a tooth this week!

A monster pizza! The biggest pizza we have ever seen!

Ana playing the Leapster.

It has been a very long week! My mom's surgery did not go as planned. The doctors got halfway done with her sinus' and she started to bleed severely... they had to stop, and will finish the surgery in six weeks. Other than some mild discomfort, she seems to be doing well. Sage has only a few chicken pox blisters left. She has been a little trooper through this ordeal.

As for Ana, things are stable at the moment. We did see the neurologist in Charleston on Friday. He changed the medication she started two weeks ago because of the bad mood swings. She is now starting Cymbalta for the neuropathy. I asked him how long he thought it would be before the neuropathy was in her kidneys, liver, lungs, and heart. He said being that her entire GI tract, all four limbs, and now the bladder are affected... we probably have 1-2 years before the kidneys, heart, liver, and lungs are drastically affected. He did say that he thinks we should start straight cathing her now before we see kidney damage... I just don't know what to do... other than give it over to the Lord... pray about this with us. This is the hardest thing Shey and I have ever had to endure together.

Ana will be getting her Dynavox on Tuesday and we are very thankful that insurance has covered it 100%. Monday her paperwork will begin for the Sleepsafe II Hi/Lo bed. This is a hospital bed with lots of safety features and we do pray our insurance will cover it, also.

Ana's follow-up appointments in Cincinnati are being scheduled for January and I will let you know when we have the dates. Shey and I have huge decisions to make for our little baby girl, and we need your prayers. Ana needs your prayers. Thank you for reading our updates and praying for Ana!