Its been a while since i posted

It has been a while since i posted because Destanys brother has been at basic training and AIT, so i didnt want him to worry about Destany while he was gone so I never posted on her wall. Destany has a sinus infection right now and taking an antibiotic to get rid of it. The nurse told me that she had a 1 small seizure this am and her stuffiness was better. Yesterday she had a few small seizures and was coughing up some stuff which is good that way its not draining into her chest. I am glad she has the nurses taking care of her. Destany weighs 116 lbs and 5ft she has become a young woman for sure. She went to the doctor at Campbell Clinic and they said they think she is all but done growing. I hope so cause I cant pick her up no more cause she is as tall and weighs as much as me. She is done seeing this doctor cause he said she is done growing and unless she has anymore trouble with her hip. I also got the doctors office to call in her depo shot so now home health nurses are going to give it to her. Now that is 2 doctors down. We figured the less of having to get her out the better.

Great 2 weeks with Destany

I went and picked Destany up on the 17th and had her through today. She really has had a great week and a half until today but i will get to that story here in a minute. Last night Lee cooked some fish and i gave Destany a piece of it and she took it and would put it up to my mouth and tease me by taking it back, she was laughing so hard from this. Finally in the end i ended up eating the fish. Well today i figured we would try with cheese puffs. She would let me take a bite then she would take a bite and just laugh about it. Well we done this through a few of the chips and went into a seizure. It was one of her stare off seizures and so it lasted forever it was where she had to have altogether 30mg of diastat. But at least we arent in the hospital and we got it under control. She has really done good with her seizures since she has been here. I am thankful for the 10 days i got to spend with her and enjoyed all of the time with her. God has been so good to us for these past 10 days and i am glad i got the time i did with Destany, She is back home with her dad now and resting comfortably.

I went and visited Destany and she was real quiet. The nurse said she had a good past 2 days laughing and playing in morning and in the afternoons she would sleep a couple of hours. On Wednesday she had to have to diastats because an increase in seizures. But all in all she is holding her own right now.
As I sit here I think about little Lucy and the battle her mom and dad are going through. I dont know exactly how they feel but i do know somehow how they feel. I just pray for Lucy not to have to go through suffering and pain. I also pray that Erik and Kate find peace within themselves when the time comes to have to let go. I met Lucy on Destanys hospital stay and she was just the sweetest little girl full of spirit. I sit and talked to Kate for a few minutes and they are really a strong couple and they have a lot of faith in God. Please say a prayer for this family tonight as we never know what the future holds for these special children god has given us.

Destany is coming home from Hospital

Just wanted to let everyone know that they got Destany's level up on her dilantin and she is at 12.6. She has done really good the last couple of days so they are letting her come home this afternoon. YEAHHHH!! Thank you for following Destany's blog and I will continue to keep everyone updated.

Destany is back in hospital

Yesterday got the text and call that they had to call 911 on Destany because she started seizing at 1:05 and continued for a while they gave her 2 20mg diastats so protocol is call 911. We get to Lebohneur to find out her dilantin is at 5.3 which is way to low for her. So they gave her a bolus of dilantin and admitted her. This morning she had 2 tonic clonic seizures lasting a minute a piece back to back. Her dilantin level is still at only a 9 and they want it between 12 and 16. So she is spending another night so they can try and get it raised back up. She sounded really congested today like gargle and moaning alot like she is hurting. Please pray for our sweet little angel.

Destany is home

Destany came home today after having a good day and night. It took us forever to be released because of the medicines that she is now on and getting them all filled there and at WalMart. But the good thing she is HOME!!!  Thank all of you for all you prayers, phone calls and text messages. We love each and everyone of you and would like to say a special thank you to the staff and doctors who took such good care of our little girl. But most of all I want to thank God for him letting us bring our little girl home.

Hope

Well Destany didn't get to go home yesterday cause she had a rough night on Tuesday night. She started seizing around 9:45 and didn't still till around 1:30. The seizures were on and off but they gave her 40 mg of diastat to try and stop them but it didn't work. Finally they eased up and she slept till 5 when they started up again. They continued until 1:45 on and off. But from then on we have not had any major seizures since then. So today they put her on the g-tube depakote since she is not going to go home with an IV in her. So far so good so hopefully we have all this under control and we will be going home finally tomorrow. Thank goodness cause she will be more comfortable in her own bed.

Finger crossed

Well Destany has had a couple of good days. This morning she had 2 tonic clonic seizures and her blood pressure dropped but other than that everything else is stable. This means if she has a good night and morning we will be going home tomorrow. I am so excited. They decided that they would wean her off her meds at home slowly instead all at once. They have changed up so much of her meds that all she really does right now is sleep. She might be awake for a little while but then it is back to sleep she goes. The doctors are fine with this cause it is letting her brain rest. Thank you for all the prayers, phone calls and text messages we have received while Destany has been in the hospital. God had his hands on her once again and thank you for letting me keep my little girl for a little while longer.

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.

Destanys Make A Wish

What a great day!!  Destany started out with getting the living decorated with balloons and streamers to start her make a wish off. Then we all took pics and then loaded her up in the limo and went to White Oak Farms in Rosemark so she could pet the horses and she actually got to ride in a buggy pulled by a horse, it was so awesome. We then left there and went to Millington Wal-Mart and boy did she do some shopping we spent about 2 and a half hours there. She was give out at this poinr so we decided to go eat at I Hop. Destany ate half a pancake and she was done. We ended up getting home around 6:30 and she was exhausted. She had several small stare off seizures today but thankful no big seizures. I will remember this day for a very long time and so glad that we got to enjoy this day with our little girl. And i am thankful to the Make A Wish people for making it all possible.

Destany comes home

Destany came home yesterday evening. All results came back negative so we know nothing different then when she went in. Her Urologist called today and her test will be on march 22 so i will be taking her to that testing. they are suppose to some kind of study to check her kidney and bladder. On our way home last night she had 2 tonic clonic seizures and then had another as soon as i got her into her chair to take her in. I text the nurse and she seems to be having an okay day started out a little sleepy. Tomorrow is her Make A Wish and I cant wait. I will post pics and all on all this tomorrow.

It has been a long few days

I picked Destany up on Friday night and she seemed like she was really fatigue and having lots of seizures. I thought it was she was tired so she went to bed at normal time and slept all night and got up around 12:30 by this time she had already had 3 tonic clonic seizures. She went back to sleep around 2:30 and didnt get back up till around 5 that evening. She had several more seizures and was very lethargic acting. She only had 2 wet diapers Friday and 2 on Saturday.Sunday was about the same as Saturday but I knew she was going to see Dr McGregor on Monday so we just waited it out till Monday. Monday got here and she woke up around 11:30 in a pretty good mood even though she was real quiet. As I was dressing her she started having this seizure where her stomach was sucking in and like she was trying to gasp for air. It was a scary sight. We made it to the doctors office and of course Destany had a tonic clonic while waiting on the doctor. Went back saw Dr McGregor and she sent us straight to the ER. So the did a urine test, ct scan, chest x-ray, and spinal tap.The urine test and x-ray all came back good. We got into our room finally about 10 that night and Destany was up and down most of the night. At about 4:20 Tuesday morning Destany started seizing and had to have a 17.5 diastat and continued to seize and had to have another 10 diastat at 4:35.  She finally quit seizing and went to sleep and slept most of the morning. She had a fairly descent day even though she had only a couple of diapers on Tuesday. Dad stayed with her on Tuesday night and said she had a descent night and morning with only a couple of Tonic clonic seizures. We had a urologist consult today so we had to go down and have an ultrasound done on Destanys kidney and bladder. Wont know those results till tomorrow. We got back got her settled and got her meds in her and she went potty so right now everytime she goes they have to cath her to make sure she is emptying the bladder. As soon as we got wet diaper off and dry one on she started seizing started out as Tonic clonic and went into a stare off. They had to give her a 10 and wait and then gave her 17.5 and still wait. This seizure lasted anywhere from 30 to 40 mins. Scared me to death i just knew we were headed back to ICU. The next thing would have been to load her with valium and the doc said if the did that she would have to go down stairs to ICU. Thank god she came out of it. They did load her with some dilantin and she has had only a few more this evening. Our goal is to be out of here tomorrow cause Destany's Make A wish is Saturday. Thanks everyone for all your prayers and continue to pray for this precious little girl she has been through so much.