Update on Destany

We have been moved out of ICU and back to the 7th floor. She is really drugged up today but Dr Morgan her neuro said that she rather her be like that at least till tomorrow to let her brain rest. I am hopeful that the doctors caught this before it got to bad. She said tomorrow maybe they will start backing her off some of the meds that she is on and see how she does. God has his hands all this and he know what is going to happen so I am leaving it at his feet now so he can be in control. I will update as soon as anything new happens

Some updates on Destany

I want to first share this that my sis in law wrote this morning:Destany, my sweet, precious niece. You are a wonderful blessing in this world. I know as you fight through day to day through the sufferings of your life, God's name is getting glorified through you. there are so many people who, just by you, their lives are being changed. My life was one of them. I have watched you defeat the odds of life and death, when we all thought you would never make it, but you did. No one can explain that, because it was only by the grace of God that you did. God is showing the world through you, little one, that He IS HERE, and He has something to say. Thank you Destany, for holding on as long and hard as you have to show the world that God is in control. Right now, you are fighting hard, yet again. And I want to say that I love you. Destany, you are loved by so many! I don't know how much you do understand, but I KNOW you feel the LOVE that we embrace you with. And one day, when He calls, you will get to hold the hand of the One whose love is the greatest. But until then, I pray that our love will shine on you, just as God's love, grace, and mercy shines through you. If it were not for you, and the sufferings you go through, so many lives and my life, would not be as God-driven as it is today. I love you, Destany, and I am praying for you!
  It has been a long stressful day. Destany started seizing on Wednesday so she ended up going to the hospital. Well this morning she started seizing at 6:05 and had quiet a few until 6:40 when she started seizing and didn't stop. They had to rush her to ICU and told me that they were going to incubate her and start her on the phenobarbital drip. By the time they got her down there she settled down and the didn't have to do anything. Needless to say she still has to spend the night in ICU and if she does fine then she will get to go back to the floor tomorrow. I am so worried about my little girl. She is so fragile and so tired. God has his hands on her right now and he knows what is right. So my prayer to you God is you know what is right for Destany and I am lying this at your feet for you to take care of her.

Wal-Marts Make A Wish

On Saturday April 21 Our covington walmart associates are granting her a wish, it is going to be a petting zoo brought to her. I am so excited since this is what we actually wanted from the get go. I am hoping that we have a good day that way she will enjoy it. I had destany Friday night and she done fairly well but Saturday wasnt so good. Thank you for everyone that reads these post and that prays for Destany daily.

This is something i wanted to share that my sis in law wrote

The reason I donated 13 inches: the letter I wrote to Wigs for Kids, A response from them, and my reaction! :)

by Maria Downing on Sunday, April 1, 2012 at 10:24pm ·

"My name is Maria Downing, and I am donating my hair to your foundation.  First of all, I would like to thank you for taking my hair to use in making a wig for a child.  I think you are doing an amazing thing! Secondly, I am not sure who will be reading this letter, but I am praying that this will be something that you need to hear, so please read this.  I know that it is a lot to read, but it would mean a lot to me if you did.

My Story

   I am so excited to tell you this story, but I honestly I have idea where to begin, so here it goes! God has given me a heart for children with physical/mental disabilities.  It all started with my niece, Destany.  She is so precious to me, and I know God placed her in my life to show me where to work, this being one of many reasons.  Destany was born normal.  She could walk and talk normally too, until she came down with Encephalitis.  To make a long story short, Destany is severely epileptic, paralyzed on the right side of her body, and has so many more disabilities, but I have only mentioned a few. Even with all of these disabilities, she is definitely a blessing.  The doctors have now given her all of the medicines that they know of to help her with her seizures, but there is only time left.  We have been told we may only have a few years left with her, if even that.  Let me tell you a story about Destany.  Not long after Thanksgiving 2010, Destany was placed in the hospital.  We all cringe when she goes in because we know this could be the last time we see her.  She was in the hospital for a long time, and the doctors had her on a ventilator that let her breathe for herself, but if she started to breathe abnormally, the ventilator would take over.  The doctors didn’t have much hope, but we all continued to pray.  The doctors took her off the ventilator a few times, but every time they took her off, she would start breathing abnormally so they had to place her back on it.  Well Christmas day rolled around, and Destany was still in the hospital on a ventilator.  Normally my family (mom, dad, brother, his wife and family, sister, her husband and family, other sister and her children, and my grandmother) come to my parents house for Christmas dinner and to open gifts.  We found out that a couple hours before our dinner together, the doctors had decided to try to take the ventilator out again.  At this time it was somewhere between 12 and 2 (I don’t remember the exact time), and I went to the living room to tell everyone that the food was ready.  I noticed my sister-in-law was on the phone and everyone in the room seemed to be listening very intently.  Donna, my sister-in-law, looked about in tears and put the phone on speaker for everyone to hear.  Let me set the scene for you. Destany has had a tube in her throat for approximately 3 weeks, so you don’t expect someone to sound the greatest, and they will probably be on the hoarse side.  Another thing about Destany is that she doesn’t normally talk very well or clearly.  So, back to the scene, as Donna put the phone on speaker she said, “Hey Destany, its mama.”  Destany said so loud and clear without a single hoarse word, “Merry Christmas, Mama.  I love you!”  Now we were all crying!  God gave our family such a miracle!

  God has shown me so much through Destany.  He gave me such an awesome opportunity to get to know and grow with her.  He has shown me through her, that life here on earth is so short compared to eternity.  We, as humans, are only here for a few short years.  God put us on this earth to grow in our faith, and to share with ALL people the many things He does for us.  I want to take every moment and every breath I have and thank God, and glorify His name with it.  He is the reason I am here.  I look at Destany, and although some people see a frail young disabled child, who has been unfortunately dealt a short hand, I see a precious child who LOVES life, and has shown everyone she comes into contact with that she was sent here by God himself and no matter who says it is time for her to die, God is not done with her here yet.  God has proven that, not just that one particular Christmas, but many other times.  We are here to glorify God’s name in whatever we do on this earth, no matter how long we are here.  Some of us are here for shorter times than others, but it is what we do when we are here that matters.

  So as I have said before, I have a strong heart for children.  In 2011, I worked at a summer camp for kids with disabilities ranging from asthma, diabetes, and muscular dystrophy to epilepsy, sickle cell, cerebral palsy, lupus, cancer, and so many more.  The purpose of the camp is to make the child as normal as possible, and for many kids that is the only week throughout the year that they are normal. They swim, play in a gym, sing on stage, get dirty and messy, and get to experience other children JUST LIKE THEM!  It was so amazing to have an opportunity to work at such a place.  I encourage you to check out the Center for Courageous Kids.  It is truly a wonderful place!

      In 2010, I had decided that I wanted to donate my hair.  I had no idea where or to whom, but I knew I had a while to think about it.  One night, I was flipping through the channels and a bald child with a disease called Progeria flashed on the screen.  I immediately stopped and found out I was watching a 20/20 special on this little girl named Haley.  I cried so much watching this, especially when one of the children said, “I have always wanted long, curly hair.”  My thoughts were through the tears were, “I have long, curly hair.”  So I went and researched organizations that make wigs and gave to this disease, Progeria.  I found that you do! So, that is why I am giving to Wigs for Kids.  I would love for my hair to go to that little girl who wanted curly hair, but I know that, that is a really hard request. I also imagine it might be a hard request for my hair to be given to a specific disease.  So, I pray that wherever it goes, I know God will give it to whomever needs it. 

   I cut my hair on February 11, 2012.  This was a special day for many reasons; one being that I got to donate my hair to such a great cause, and the second being that the Make a Wish foundation did something special for my niece.  She was in the hospital for a few days just two days before the special day, but I am so thankful that she was still able to experience something so wonderful and enjoyed the time as well.  Thank you so much for listening! "

A few weeks later, I received this message back in a card:

"Wow! What an awesome story you sent with your hair donation! It means so much to hear from people like you who are so concerned about those less fortunate than themselves - and some child will be blessed because of you. And God will bless you for it and your love for your niece Destany."

My Reaction:

I am so thankful that she read my long message for one, and two, that she took the time out from her day to write me back.  Another thing was that God has such a great message, and I was so happy to share a brief piece of His message to someone else.  The point of this is not to gloat that I did something great. Not AT ALL! This has NOTHING to DO with ME! I wanted to share this because we all have a story, every single one of us! God can use every one of us, if we let Him.  Do not be afraid of being rejected! God has done so much in our lives, how can we sit around and keep the news of salvation from others! Sometimes, God uses our biggest and hardest moments to help others. You know, the moments when we KNOW with out a shadow of a doubt that WE CANNOT DO IT, yeah, those moments.  It is in those moments that God makes us whole. I, recently shared with a friend, that WE are each a puzzle. God is the glue to our puzzle. He is what holds us together and we cannot control any one piece of the puzzle. If we try to control one piece (any part of our life) then our puzzle falls apart because we are not letting the GLUE do its job, to HOLD us together.  Let God take control, and LISTEN when He calls! I hope this has helped someone, and if not, I hope you have enjoyed reading just a glimpse of what God has taught me! :)

Oh, but there is more...

So I thought of a little more to add to this…I initially wrote this to my sister in law, but I think it is something that we need to be reminded of when we just don’t understand why things happen in our lives…

We will never be able to fully understand why the things that happen, happen. But we must always remember that God has a plan. I dont know God's full plan for Destany, as God is the only one who knows the answers, but I do know that God has used Destany in sooo many ways to glorify His name, which is what He asks of us. God used Destany not only in my own life, but your life, and even in her doctors lives. Do you remember Christmas day 2010? How could any of us forget! God has defeated the odds so many times with Destany. Think of how many times she has had Encephalitis, yeah, who survives that? Not many people, and no doctor can predict how someone will survive that.  Only God could beat the odds and predictions of doctors. No one can explain how Destany survives when she does. It is only by the grace of God that she does, and when others see and look upon her life, all will know that it is only by God's hands that she has been here as long as she has. God never called us to live easy lives, if anything, He said we would have hard times. But it is through those hard times, when we are shown that WE cannot do ANYTHING. God is in control, and we are NOT. That in itself should give us peace. We don’t have to worry, because the big Daddy, the Creator, Sustainer, and Savior has each of us in his hands, and its ok if we don’t understand everything. The best thing to remember is that our time here on this earth is so little compared to eternity. God offers us eternity, and Destany has eternity with Him. Her life here on earth may be short, crippled, and hard, but her eternity will be dancing with Jesus hand in hand. God loves you and He wants you to remember that through all of this. He understands. God sent His only Son, Jesus, to be beaten, mocked, hung (to say the least), and die for you and for me, so we may be able to live a life in eternity with Him. I cannot imagine how hard it was for God to do that, but He did that bc He loved us THAT much! So remember, God loves you and He KNOWS what you are going through, more than you could ever imagine!

Thanks for reading! Always remember, GOD LOVES YOU! :)

What a weekend.

I picked Destany up from her dads on Friday. She had an awesome Friday evening. She slept through the night and woke up in a fairly good mood. So around 1:51 she started seizing and didn't stop till 2:18. I gave her the 17.5 diastat and 10 mins later gave her the 10. I had to call the ambulance cause she would not stop seizing. She was in a stare off. The ambulance got here and transported us to Lebohneur where they did nothing but let us go home in 3 hours. No blood work no nothing, i have a lot of respect for that hospital but i did not like the doctor that we saw he was rude and seem not to care.  Destany slept all night Saturday night and got up at 7:15 and had 2 tonic conic seizures lasting around 30 secs each. I gave her medicines and she went back to sleep and slept till 12:30. I got her up and tried to feed her but she wanted nothing to do with it so i gave her a bath and she laid in mommy bed watching Dora. I took her home and then she decided she was going to have a stare off seizure before i left. I am so confused on my feelings right now and i need to understand why such a precious young lady has to go through this. I feel like it is all my fault cause she always has a hard time when she is being moved between my house and her dads. I feel like i am being selfish. I just want to be with her all the time cause only God knows how much time she has left. All i want to do is understand why she has to go through all this. Continue the prayers for Destany and the rest of us as we continue this rollercoaster ride we are on.