Please share this with everyone so prayers can be put out there

Well we ended up at Lebonheur cause Destany had 2 diastats on thursday of last week. We were betting it was her dilantin to low. Boy were we wrong. Her liver numbers were elevated. Since then it feels like we are living in this battle and not winning at all. Her dilantin level has hit critical twice now and her liver numbers will not come down. Yesterday we had 7 seizures and today we had 9 seizures. I just dont understand why they will not come down. I am trying to leave this in gods hands but it is not working. I see some hope sometimes when she looks up at me and smile but that doesnt happen very often. It is also frustrating when the doctors dont even know what the next step is going to be. I am so lost right now and feel like we are sinking more and more everyday. I know god has a plan for her but I just would like to have a hint of what it is. I feel like when i am at home and her dad is there am i going to get a call that says get her now. I cant help but worry because my little angel has been through so much. I am asking everybody to share this and please get the prayers out there for my little girl. God has all the answers and i have none.

a worried mom and dad

As u all know Destany had a rough week last week. We are worried because she just isn't bouncing back the way she use to. She is still sleeping a bunch and pretty much just stares a whole through u. I did manage to get an Elvis smile out of her. We ask all our prayer warriors to please keep Destany in ur prayers as we don't really know what this last seizure has do e to her. I am scared to know really what is going on. I love my little girl and hats seeing her like this. She is my world. Next Saturday I will get to see my little girl go down the aisle in a wedding dress. She is the junior bride in her big brothers wedding. I know I will be crying like a baby.

stressful week

Well Tuesday I had only been clocked in for about 10 minutes when David called and said he just gave Destany her second diastat and she was still seizing. When I got there the ambulance was already there and had her on the stretcher ready to go with her. I rode in the ambulance with her to lebonheur. We get there her fever is 103 and she is still seizing.eventually they give her ibuprofen and valium to calm her down some. We were admitted to the hospital and did good until 345 am when she started seizing again. Her temp was only 99.1so they again gave her ibuprofen and for her seizures some more valium. After this she had a couple more seizures. I crawled in bed with her because I was scared I wouldn't here her seize. The morning g went well and if all went well we were going home that afternoon. Well she got to come home. That night her fever jumped back up to 104 and they again gave her ibuprofen and it finally came down. Last night and today her fever has stayed down and a little to no seizures. Thank God because I was getting worried about this fever. Thank you all for your prayers. In 2 weeks Destany will be the junior bride in her brothers wedding. I will be posting lots of pictures.

I am young to go by and see destany tomorrow because I am really missing her tonight. Her shirts came in today so I will be getting everyone their shirt to them Friday. I am asking everyone keep destany in your prayers cause my heart feels heavy for her right now. Call it a moms intuition. I feel like something isn't right maybe its just me or because April 11 2001 is the first time she got sick and this horrible dream started.one good thing is it has developed my boys to be fine young men.I just needed to vent for a moment any goodnight to all.

weekly post

Well Destany had an interesting week. Her ear started draining some either sunday night or monday night and then burst the next morning. The nurse noticed blood coming out of her ear and discovered it had burst. The nurse then called the doctor and the doctor called in a prescription and ear drops for her. We then get her blood levels and her dilantin is to high and valporic acid is to low. So again we are at a lose on what to do. I text her nurse today and she Destany has slept alot today. So I pray that it is her body resting from the infection. Please keep her in your thoughts and prayers. We are also looking at making Destanys Dream shirts as soon as I get the design finalized and done I will let you know how you can order them.

a couple of visits

I visited Destany earlier this week and spent just a few minutes with her cause i got off work late. I went out there today and took her some spongebob pants and she would never wake up. She opened her eyes a couple of times but that was it. I love that little girl so much. She has been having some good days and that is awesome.I really look at other people and see that they do have it much worse than her. Destany Lynn Wolf mom loves you to the moon and back.

Lee and I went to see Destany today. She just smiled at Lee and was so happy to see him. She got so excited that she had a couple of seizures while we were there. I really enjoyed the smiles she gave since we don't get to see them to often. Overall the visit with Destany was a good one.

Destanys day

I saw Destany this evening and she was doing ok. She had 2 seizures today 1 this morning and 1 while getting a bath. while i was there she did some jerking. But she was watching Karate Kid and laughing at Ralph Machio earlier according to the nurse. I started messing with her bu tickling her and playing with her bear with her and got a great smile out of her.It made my day. I love and cherish each smile I get from her. The nurse thinks that the knot behind her ear is a swollen lymph node. David is calling the doctor tomorrow to see what they want to do.

Good visit

I went out and visited Destany today and gave her Valentine that I bought here. I had to put her hand in the bag to get her puppy out because she was not interested at doing anything.she finally got it out and held on to it. She was really sleepy because she had just got her meds. She was awake when I left but all she would do is just look at me. I tried to tickle her and poke her all she would do is look at me. I was talking to her nurse today and she found a knot behind her ear today. This has me worried because my middle son had a knot behind his ear and it turned out to be lymphoma. So this worries me to death because i worry so much. Maybe it is just a swollen lympnode. I hope and pray that is all it is. We are calling the doctor first thing in the morning to find out what she thinks and wants to do.I will keep everyone posted on this and will let you know as soon as we know anything.

Destany

I got a text at 7:40 this morning saying Destany had to have diastat this morning due to her being in a start off seizure. I really hate that she had to have this cause she just had some on the 29th of january. I went to see her today and she slept most of the time. Ms lynn did say she put spongebob on and she perked up for a minute. She really does not do this much anymore. She really doesnt even smile anymore which breaks my heart cause anyone that knows Destany knows how she use to love to laugh and smile. She at one time had the pee wee herman laugh and it would just make you laugh till you all but cry. I love this little girl and I really hate the days when I go and she just lays there all i want to do is cry. Please continue to pray for her and everyone around her cause we suffer as much as she does.

missing destany

I am missing my little girl tonight. She has had a pretty.good week with only one diastat. I think we can handle this. She has luckily not been really sick since the flu. I hope that it stays this way. She has her days where she sleeps a lot. But that is to be expected. I love u sextant and will see u in a few days.

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