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.