Tuesday, August 6, 2013
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.
Wednesday, July 10, 2013
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.
Friday, July 5, 2013
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.
Tuesday, April 9, 2013
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.
Saturday, March 9, 2013
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.
Sunday, March 3, 2013
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.
Saturday, February 23, 2013
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.
Monday, February 18, 2013
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.
Sunday, February 17, 2013
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.
Monday, February 11, 2013
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.
Saturday, February 2, 2013
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.