I am still smiling so big and praising the Lord for all of the good reports we have received this week.  All of Madison's big appointments just happened to be today and all of them were great!

Genetics were the first this morning and they were so pleased with how well Madison was doing.  I do believe they were in shock at how much she was talking and of course, Madison had to put on a show. 

Our second appointment was with cardiology and nothing has changed from the last visit.  He as well was please with Madison's overall health.

Our last appointment for the day was with pulmonary.  They were so happy that Madison didn't have any colds this winter.  We are still trying to decide if we should do another sleep study on Madison.  The doctors want to make sure that Madison's Co2 are not elevated and to check that, we still have to do another sleep study.  Of course, these are torture in my eyes for any child who has to go through one.  Shane and I just have decide if we want to put Madison through it.  Right now, she doesn't show any signs of those numbers being elevated but he wants to double check.  Please pray that we make the right decision for Madison.  If we do decide to do one, it will take place on her next six month check up. 

Dad had his check up today with cardiology as well and he also got a good report. 

We met another family tonight at the hotel who were victims of the tornado in Tuscaloosa.  The lived in Pleasant Ridge, which was one of the hardest hit areas.  She was home with all of her kids and two of their friends kids and they ALL survived.  Her husband called her 2 minutes before it hit and told them to look out the window because he had heard that it was heading their way.  As soon as they looked out the window they saw all kinds of debris flying in the air.  They went down to the lower level of their house and put a mattress on top of them.  They are still amazed that they made it through alive.  The mother was telling us that they live in a pretty popular neighbor in a culdesac.  Their house, along with one more in the culdesac where the only houses that were not leveled but they were the only ones on their street who made in through the storm. 

I sat their in shock with tears in my eyes listening to their stories.  This mom had 4 kids.  One is a senior, one is in 9th grade, 6th grade, and 3rd grade.  We listened to the 3 younger ones tell their story about the tornado.  These kids still have such a look of shock and disbelief all over their face.  As soon as they got through telling their story, I went and gave all the kids and their mom a hug.  I can't even imagine going through what they have gone through. 

We are actually leaving to come home first thing in the morning.  Shane's grandmother's funeral is at 2:00 tomorrow afternoon in Geneva, AL.  All we have is a dentist appointment so I am going to cancel that one and just take Madison to see our regular dentist on home.  We aren't going to make it back in time for the funeral but mom and I are going to go down to the tire store and help them out. 

Thank you for all the prayers that you lifted up this week for Madison for I know that is the real reason why we have gotten all the good reports.  I love and appreciate you all more than you will ever know.

Note- please excuse on the grammer mistakes and misspelled words.  Spell check isn't working for some reason and I don't have time to go back and reread what I wrote.  I just hope it all makes sense!  =)

Well today we saw the nutritionist and the orthopedic doctor.  We were pleased with both appointments.  The nutritionist wants Madison to get more fluids down during the day.  Right now we are averaging about 12 ounces a day and she wants us to work up to 20 ounces slowly.  Madison weighs 20 pounds and she made 24 her target weight to where she thinks she needs to be.  Of course, this isn't going to happen overnight and probably won't happen within the next year.  However, that is a long term goal that we are going to work towards. 

The orthopedic appointment went well also.  Right away they wanted to do xrays and I asked if we could see the doctor first and then decide if we need to do xrays.  When they xray Madison, it is so painful for her because of how they have to stretch her out and position her to get them done properly.  The doctor waited on them and then after examining Madison he decided not to put her through it.  Thank goodness!!  His resoning for that was if they did find something, would we really do surgery to fix it?  The answer is no.  Shane and I have been pretty adament that we will only put Madison under anesthesia if it is absolutely necessary.  He also said that he would recommend that we stop physical and occupational therapies.  These therapies have gotten painful for Madison and I have been working with Madison this winter while she stayed inside.  He said that we could just continue with that.

Overall another good day.  Tomorrow is our busy day with genetic, cardiology and pulmonary.  Normally I am a nervous wreck before our cardiology appointment but I have such a peace about all these appointments.  On Thursday all we have is a dentist appointment. 

Shane called me this afternoon and told me that his grandmother passed away this afternoon.  She was admitted to the hospital yesterday and they were told she probably would only live just a few days.  She had been in a nursing home in Bonifay for several years battling Alzheimer's disease and had stopped eating 3 days ago.  I am going to talk to our genetic doctor tomorrow and we might end up canceling the dentist appointment and head on home.  Just depends.  I personally think the dentisit appointment is a joke because Madison does not cooperate AT ALL!  All they do is a fluoride treatment. 

I am ready to be back in sunny and hot Panama City.  It has rained here all day and it is freezing!!!  Okay, I am exaggerating a little bit but it is in the low 50s and in the morning it is going to be in the low 40s!  I did not pack for cold weather.  I did pack Madison some long shirts and sweat pants but I didn't bring any jackets.  We had to make a run to Old Navy this afternoon to get Madison some warm clothes.  We will find any reason to go shopping!!

We made it to Birmingham last night around 5:00.  I was very worried about whether or not we were going to have a room due to the tornadoes in Tuscaloosa on Wednesday.  We were guaranteed a room because I had made reservations six months ago but because the hotel has a smoking floor and they were at capacity, they couldn't promise us that we wouldn't be on the smoking floor.  Since Madison is on oxygen that wouldn't work.  To make a long story short, we did get a room and we are NOT on the smoking floor!

We always get to know people at the hotel while we are here since we stay for several days at a time.  We have gotten to know several families who have made this hotel their home for the next 30 days.  We have also gotten to know a lot of volunteers who are here to help.  It is so heart warming to see how everyone has come together to help others out, strangers at that. 

After Madison's appointment this morning (which I will get to soon) we decided to take a ride to Tuscaloosa and see some of the damage.  We really didn't think we would get to see a lot since the police have closed off a lot of the area that was hit hard.  As we started approaching where the tornado hit we some a lot of trees and signs down.  When we got the area where the tornado hit we couldn't believe it.  We all got silent and just stared in shock.  I can't even put in to words how bad that damage is.  That tornado was so wide we couldn't even see where the end of it was.  We turned down a road and started taking the path of the tornado and I still just can't even explain it.  I did take some pictures but the pictures don't even do it justice.  I can't even imagine what these people went through on Wednesday night and what they are going through now. 

I took some of them with my cell phone so they are a little blurry.

Now back to Madison's appointment.  We saw a neurosurgeon today.  I knew when this appointment was scheduled by our genetic doctor that I should question why we were seeing a neurosurgeon and not a neurologist.  I knew today that I should have gone with my gut because today was pretty much a wasted appointment.  He didn't tell us anything that we didn't already know and he questioned as well why we were referred to him and not a neurologist.  I know now that I should always go with my gut and not second guess myself.  The good news is that he did go over discs from previous MRIs and examined her and didn't see any need for us to continue to see him.  We will see our genetic doctor on Wednesday and talk to her about it and see if there was a mistake made when they scheduled the appointment. 

Tomorrow we will be seeing the nutritionist and the orthopedic doctors.  Wednesday is our busy day with genetic, cardiology and pulmonary. 

Thank you for keeping Madison and our family in your prayers.  We appreciate you all more than you know.  Please keep all the people that were hit by the tornado in your prayers as well.  After hearing the news that Osama Bin Laden was killed last night and seeing so many people helping one another up here, it sure makes my proud to be an American!!

Hobby Lobby hit by tornado

The Tide truck helping people was their clothes.

We are so proud to annouce that Amy and Paul welcomed their sweet baby in to the world on Wednesday night.  As some of you may or may not know, they were not finding out what they were having.  I was so happy to hear that it was a beautiful baby girl, who they named Aubrey Renee.  I would have been happy with either one, but I am partial with little girls.  =) 

Since Amy had to have a c-section, and Aubrey wasn't born until after 7:00 on Saturday night, we only got to get a few pictures of her.  Thursday afternoon we were able to Skype with them at the hospital in Dallas and Madison got to meet her new little cousin.  I recorded the meeting and it is PRECIOUS!!!!  It will be posted below. 

We are leaving in the morning at 10:00 to go to Birmingham for Madison's 6 month check up.  I can honestly say that this is the first time that I have not been anxious and sick over these appointments.  I was earlier in the week but I knew I could not keep stressing about this.  I have laid all my worries and anxieties at the Lord's feet.  This situation is out of my control and in his.  Please keep our sweet Madison in your prayers this week.  I do promise that I will update every night and give the updates of that day's appointments.  Our last appointment is Thursday morning at 10:00 and we will be coming home after that.

Thank you for caring for Madison and wanting to share this journey with us.
Love to you all!

Yes, I know.  It has been a long time since I last posted.  We have been pretty busy and not much exciting things going on so I felt like I haven't had too much to say.  We are leaving next Sunday to go to Birmingham for Madison's 6 month check ups.  The plan is to come home on Thursday after her last appointment that morning.  However, if any of the doctors want to run any type of tests on her we will have Thursday afternoon and Friday to do that.  I really don't think they will though but I have left that open just in case.  I will post every day next week so everyone can get the updates from the appointments.

We had a busy but wonderful Easter weekend.  We went to Dothan for the annual Ethridge reunion.  We left at 8:30 Saturday morning and got home around 5:00 that afternoon.  Madison was worn out to say the least.  Sunday we got up early to go to the 8:00 service at church which meant we were running around like crazy trying to get there on time.  We did get there on time but I didn't get a single picture of Madison in her Easter dress.  I was so bummed out.  Madison was so sleepy when we got home I didn't want to make her take any pictures.  I am going to recreate it today and take pictures.

I have several pictures and a video that I am going to post.  The video is of my grandmother (Madison's great-grandmother) rocking her Saturday after the reunion and singing Jesus Loves Me to her.  You will probably have to turn your volume up because when I recorded it, I was in the kitchen and it didn't pick up the sound that good.

I will try to post more this week.  My list of things to get done this week is growing every day.  We have to take so much stuff when we go and I am already starting to pack.  We are anxiously awaiting the arrival of my little niece or nephew.  Amy's due date was last Sunday and she is going to the doctor this morning.  Please keep Amy and Paul and baby Cristina in your prayers. 

I hope you enjoy the pictures and the video.  Love to you all!  =)

Madison shopping in style!

Madison patiently waiting for Daddy to get home. 

Cousins Scarlett and her daughter Brooklyn and Madison and I.

 4 generations

Cousin Ronald showing Madison an Easter egg. 

Madison sleeping good after a long day fellowship.

Big Mama rocking and singing to Madison.

I have been wanting to post this video since Tuesday but I am just now getting around to it.  Madison has been going full throttle and I am so thankful for it.  She has been sleeping in until about 10:30 every morning.  When she is up, she does not slow down.  I get the biggest laugh because we have the same conversation about 300 times a day!  Maybe a little exaggerated but it is a lot.  She will tell me hey and then go down the list of all the names she knows and I have to tell her where every one is at and then we repeat it. 

We call my grandmother Big Mama.  We have been working with Madison to say it for awhile now and she has finally got it.  She says, "Me Mama."  When she says it, it sounds like she is saying "mean mama."  We will just stick to what we hope it is and that is her way of saying Big Mama.  =)

Now to the video.  A few years ago, Paul's mom Jackie gave Madison this leap frog dog named Scout.  She played with this dog for about a month straight and then moved on.  She has days where she still plays with it non stop.  Well, Scout has been the top pick for her toy this week.  Monday, Madison would be playing with Scout and then Scout would disappear.  Madison can say Scout (that's the name of Amy and Paul's dog too) so she would tell me that is what she wanted.  Madison will always show me where she dropped a toy at for me to pick up.  Well this time Madison went into the bathroom which isn't unusual but she stopped at the bath tub and I realized Scout was in there.  I asked her why Scout was in the tub and she would say, "Bubbles?"  Apparently, Madison thought Scout needed a bubble bath. 

I couldn't catch her on video putting Scout in the tub.  I did video tape her putting Scout in the tub after I asked if he needed a bath.  Still a cute video.  I hope you enjoy!  =)

I can't believe it has been almost a week since I last posted.  I got a phone call Saturday morning from my friend Kellie Moore.  Kellie and her husband, Brad, live in Nashville and they had a daughter named Rylee, who was also born with the same disease as Madison.  Rylee passed away in 2009 at the age of 8.  Kellie and I have become such a great friends and talk on a weekly basis.  She called to tell me that a little boy with I-Cell Disease, Ethan from Minnesota, passed away that morning.  He was only 3 months younger than Madison.

My heart was breaking.  Shane had gone into work on Saturday and Madison was still asleep.  To say I cried my eyes out is an understatement.  After sobbing for a good 20 to 30 minutes, and Madison still being asleep, I knew the only way I was going to get peace out of this situation was to go to God in prayer.  It is amazing was a great quiet time can do for you. 

If I did not have my faith, I would live every day that we have with Madison in complete fear.  Don't get me wrong, there are days where I let that fear slip in.  I have to remind myself that this is the Lord's will for Madison and he would not want me to have fear but rather complete faith.  We have to live each day we have with Madison to the fullest and give her the best life possible.  That would not be able to happen if I let fear run my life. 

We sang a song Sunday night at church that really moved me.  It has always been one of favorites.  The words just spoke so loudly to me.   

I need Thee every hour, most gracious Lord;
No tender voice like Thine can peace afford.


I need Thee every hour, stay Thou nearby;
Temptations lose their pow’r when Thou art nigh.


I need Thee every hour, in joy or pain;
Come quickly and abide, or life is vain.


I need Thee every hour; teach me Thy will;
And Thy rich promises in me fulfill.


I need Thee every hour, most Holy One;
Oh, make me Thine indeed, Thou blessed Son.

Refrain:
I need Thee, oh, I need Thee;
Every hour I need Thee;
Oh, bless me now, my Savior,
I come to Thee.

I lean on God every day to help me be the best mom that I can be to Madison, both physically and spiritually.  I am fully aware of the outcome of the disease that Madison has.  When you really think about it, we are all "terminal."  We might not pass away from a disease that is terminal but we will all pass away some day.  God knows the begining and the end for each and every one us.  I am so glad that Jesus lives in my heart and that he is there for me every hour that I call on him.  

I don't want people to feel sorry for us when they hear about Madison.  I know who holds tomorrow and for that I put all my faith in the Lord.  

Thank you for keeping up with our precious Madison.  Please continue to pray not only for Madison but all the other children who are battling this disease.  Also, please keep Ethan's family in your prayers, Scott and Tara Finne, and his little sister Emma.

Hug your loved ones a little tighter today and tell them you love them a little more often. 

~Romans 8: 38-39
          "For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord."