I picked Destany up on Christmas afternoon excited to see how she was going to react to her presents. When she first saw them she was pointing and wanting them. Once she got them though she really didnt want nothing to do with them so the boys helped her open them. It really hurt me cause i thought that she would really enjoy opening her gifts. She had a pretty good day Sunday she was really quiet though and sleepy. Monday Lee had her and she did good for him while I worked. When I got home she was still lethargic acting and sleepy. She rested pretty good for me that night. I got up to leave Tuesday morning for work and she had a few seizures but settled down and went back to sleep. I called and checked on her since mom had her and wanted to make sure all was well. When I got home mom said she had been moaning some and pulling at her legs. She continued to do this off and on during the evening time and I thought it was cause she maybe coming off her cycle. She was up and down all night Tuesday night moaning, whinning, and having some seizures and nothing i did would help. So  I stayed home with her on Wednesday cause we were all just exhausted. She slept till 2 wednesday afternoon and done pretty good the rest of the day. Thursday she wanted to act up some to the point i had the diastat ready. She still acted somewhat lethargic but not as bad. Today she got up in a good mood and has had actually a pretty good day. After the week we have had she deserves to have a better day and hopefully we will have a good weekend. Will post more later and wishing each and everyone a happy new year.

The past week

I went and picked Destany up Sunday from her daddys house and went by KFC to get some chicken. As soon as I got it Destany started to seize and she seized till I got home, scared me to death.  Got her home and got her laid down and she would not stop seizing so I had to give her diastat. She did ok for the next couple of days till Wednesday, when we were going to my mother in laws for our Thanksgiving dinner.  Right before we left she decided to have a tonic clonic seizure that last around 45 secs, should have taken this as a sign not to go but i didnt. Got her over there and unloaded from the truck and got her in her chair and she started seizing pretty bad, at this point my son scooped her up and got her into the house quickly. We got her laid down and she finally calmed down.  She ate a really good supper and thought she would do good and she started seizing again and at this point I had to go ahead and give her diastat. These were some of the worse seizures i have ever seen Destany have. The last couple of days have been good. She ate a great Thanksgiving dinner. Saturday we put up the Christmas tree up and she just stared at it. Today she slept till 2 but i got her up and she continues to look at the tree in awe. She loves the lights. This is her favorite time of year cause of the lights.  Continue to pray for our little Destany cause this is the time of year she always gets sick and we are praying for a peaceful Christmas!! Love to all

I figured I would update you guys since it has been a while. Destany had her 13th birthday on the 29th of October. We had an awesome birthday party for her and around 45 people attended. Next year we are moving it to another location and hopefully have 100 people for it. She has had a rough week this week with having 2 diastats on Monday and one on Friday but it was a full moon. Her neurologist says when it is a full moon seizure patients seem to act up more. She came to my house on Friday and had a rough night Friday night, she woke up at 3am fussing and wouldnt settle back down so I crawled in bed with her and and just laid with her.  She calmed down some but she wanted to keep her hand under my neck or holding my hand so I wouldnt run off. That was fine with me i felt close to her for this. She decided to settle down around 830am so I laid down around 9am and slept till around 1030 when the boys walked in and said mom are u up and i had to answer them. She ended up sleeping till around 2 that afternoon. Last night was a better night and she slept really well. She wanted up about 11 so I got her up she ate half a donut and she went back to sleep till 2 this afternoon. Overall really good weekend with my precious little girl. She  is my world and I am looking so forward to Thanksgiving and Christmas with my precious little girl. I have already started Christmas shopping for her.

Sorry I havent updated in a while

I havent really had time to update but i am now. Destany was hospitalized a couple of weeks ago due to her seizures. She has been sleeping alot and still having lot of seizures. I got her Friday and she did ok had two tonic clonic seizures. Saturday morning she woke up and while she was walking up she started doing this weird thing that i cant really explained. Just scared the crap out of me. She had a fairly good day after this. Today Destany decided to sleep till 12:30 so I got her up to give her a bath.and she decided to sleep through it. then went to brush her hair and she continued to sleep through it. She after that had a good day.

Pretty good couple of weeks

Overall Destany has had a good couple of weeks. She is laughing and eating and talking. I have been so glad to hear the laughter come from her. She had  spell last weekend where she didnt want to pee but the doc said all looked ok. Last night she ended having a bad seizure which scared Brandon to death, but ended up ok afterwards. Today was lots of laughter and I tell u I am so glad. She will be having a birthday in exactly 2 months tomorrow so I am doing like a sweet 13 birtday bash for her. It is a milestone in her life where she is going to actually be a teenager. Less than a year ago I thought she would never see this birthday. She will have one huge party this year and I am so excited about it.

Well Destany had a bad day Friday her dad said she had a seizure where she was joking and shaking. He gave her diastat after a minute of this and she then went into an absence seizure. After this she went to sleep. The doctors office called and said her labs were fine so David went up on her Mogadon. Since he has raised it she has not had any seizures. So lets hope that now this is going to work like we are praying that it is. Tomorrow night we meet with Make A Wish foundation volunteers to talk about Destany. Will update this later.

Well Destany went home yesterday. She has had a pretty good week thus far. She had to have blood work yesterday cause she is not urinating enough so they wanted to make sure her kidneys are functioning correctly. The new medicine can cause urine retention and god know she doesn't need anything more to go wrong with her. Since Saturday she has only had 1 myclonic seizure. This is totally awesome. I will be gone a couple of days but will update everyone on Destany when i get back.