Thursday, July 28, 2011

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.

Saturday, July 23, 2011

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Not so good day today

Destany had a fabulous Thursday and Friday with no seizures at all. She ate supper  both nights and slept all night. Last night was different she whined from 1-3 and finally went to sleep. She was up at around 6 and was ready to rule the world. She was laughing and giggling at the tv this morning. She was full of herself. She fell back to sleep and got up at 11. She was still playing and giggling then all of a sudden she went into a tonic clonic then into a stare off seizure. This seizure  lasted around 10 minutes and she had to have diastat. Bless her heart to go from having an awesome week to a bad day is not so fun. But the new medicine is hopefully doing what it is suppose to do. I am asking everyone to continue the prayers for our little angel.

Wednesday, July 20, 2011

Sorry havent posted in a while just been busy. Destany came home Saturday and Saturday night didnt sleep very well. She got up Sunday and was very tired but wouldnt sleep. On Monday night she went to bed around 8:45 that night and slept till around 1:30p.m. Monday afternoon. After that she got up ate a salad and played. She went back to bed that night and slept all night last night. We started her new medicine last night so hope and pray all goes well with it.She had a good day even though she was really drowsy. Oh by the way Make A Wish is going to grant her wish. Goodnight for now and will post more tomorrow.

Friday, July 15, 2011

It has been a long day.

Well we got to the hospital at 10:30 this morning. They had told David that her appointment was at 11:00. So while we check in it says 1:30. The lady proceeds to tell us they schedule people like that and tell them to be here early in case of a cancellation. Needless to say there was no cancellatin and Destany didnt get to go back till 2:40. She ended up having 18 cavities filled but luckily no crowns or none had to be pulled. He said they were easy fillings. She done really good and was trying to wake up according to doc. Well they called me  back there and i she was semi awake trying to smile. Mind u this is around 5. I asked if she had her meds yet and they said no. I told them that she needed her meds like now. So she had to call a doc who had to come and get her meds put into the system and then get them ordered. Needless to say in all this around 5:55 Destany started seizing and had to have valium to get her out of it. She seized for like 7 mins. But all is well we are in our room upstairs on the 7th floor. Will post more later.

Thursday, July 14, 2011

Well Destany has an awesome week with little to no seizures it is amazing. Tomorrow we head to Lebonheur to have some cavities fixed, they have put this off for a while so they are going ahead and doing it. She will have to stay in the hospital for 23 hours after they get done. So that means that i will be spending the night with my little angel tomorrow night. I am just grateful she is doing good and ready to get tomorrow past us and spend the next 2 weeks with her.

Saturday, July 9, 2011

Some good days

Destany has had a wonderful week a few seizures but nothing that required Diastat. She actually ate pretty good for her dad on Thursday. And Friday my baby turned into a young woman. Her dad called and said right this date down and i said why and he said Destany just started her period. Some people might think that this is kind of stupid to put on her but to me it is another milestone that we actually got to experience with her. So know comes the time where we try and make her an appointment to get her started on the Depo shot so she doesnt have to experience the pains that goes along with this.

Tuesday, July 5, 2011

Destany had a rough start to Sunday morning. She ended up having to have a diastat early. But at least she had to only have 1. Since then she has had 2 good days. I talked to her dad earlier and she ate half a chili dog. Go Girl!! I talked to the pharmacy in Canada this afternoon and Destany's new medicine Mogadon will be here in 5-7 days. David, the kids and I are all trying to figure out what kind of wish we can have for Destany. I submitted her name last night to Make A Wish.

Saturday, July 2, 2011

Destany had a pretty good day today. Her dad said she had some seizures but not bad enough for diastat. The name of the canadian medicine is mogadon.  As soon as the pharmacy calls we will be getting this medicine and will be starting her on it hopefully by the end of next week. This medicine is in the same family as the diastat so we will have to watch her if and when the diastat is given to make sure the diastat will work.

Friday, July 1, 2011

What a last couple of days

Sorry havent posted lately. I have been really busy and not feeling to well. Destany had a descent day Wednesday, her dad said that she seemed high off the diastat that morning but by the afternoon she had perked up.  Thursday was a different story. She ended up seizing again and had to have 2 diastats again this time her seizure lasted 18 mins. I just cannot imagine what her body goes through when she seizes that long. She ended going to the doctor today cause things just arent right. The doctor told us we were out of options, well there is 1 option and it is another medicine. I dont remember the name right now but it is one we  have to get from Canada. But she said there is no other thing to do all her levels were good so she just dont have any other answers. I just dont understand why God wants to put this innocent child through all this, sometimes i wish i could take all her pain so she can lead a normal life. But i know i cant and i also know that he does everything for a reason. I am closing this tonight and asking everyone to pray for my little girl because she really needs them right now.