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.