Friday, December 30, 2011

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.

Sunday, November 27, 2011

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

Sunday, November 13, 2011

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.

Sunday, October 16, 2011

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.

Sunday, August 28, 2011

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.

Wednesday, August 3, 2011

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.

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.

Tuesday, June 28, 2011

Destany didnt have a real good day. I text her dad at lunch time and when he called i got scared. He said Destany had been in a seizure and had already had her 17.5mg of diastat. He proceeded to tell me the nurse had called him back and said she was still seizing and was going to have to give her the 10mg of diastat. She gave her the diastat and then was zonked out for the afternoon cause boy that is alot of diastat. Her dad said she woke up and played for a little while and then went to bed.

Monday, June 27, 2011

Destany had a better day yesterday. She actually slept till 6 yesterday morning. She didnt have as many seizures as she normally does so i think she finally got a good nights rest. She went home with her daddy last night and he said she done fine. Talked to him and the nurse and she has had a few tonic clonic seizures but other then this she had a pretty good day.

Saturday, June 25, 2011

What a day

Destany woke up this morning around 4:15 and was in a generalized seizure. She came out of it and watched tv till she had a tonic clonic at 7:45. I went ahead and gave her meds to her. She finally went back to sleep between 8:30 and 9. She slept till around 12:45 in which i went and woke her up. I finally got her up at 1:15 so she could stay awake and not go back to sleep. She had quiet a few myclonic seizures at this time but finally stopped. She got her 2 oclock meds and had lots of jerks till around 5. At 5 she had a tonic clonic seizure in which it only last 45 sec. When Lee got home he cooked out and Destany started eating around 7:15 and was picking at her chips and then started really eating them and then she had another tonic clonic that turned into a generalized seizure. She ended up having diastat after the first 3 mins and after the diastat seized for another 5 mins. After the diastat zonked her out and she finally went to sleep.The seizures are getting angrier every day and they are starting to really make me mad cause I dont like seeing this innocent child going through these and there is nothing I can do.

Friday, June 24, 2011

Didn't post last night cause it was crazy around here. The boys got back from there 4 day camping trip so of course it was catch up on facebook night. Destany had another rough day yesterday. She woke up between 4:30 and 5 yesterday morning and had 3 tonic clonic seizures in that time. She finally went back to sleep and slept till 12 and got up she was doing good and in a good mood so I tested the water and took her to Wal-Mart, boy should not have done that. She had a tonic clonic seizure and a drop seizure while we were there. I figured it was time to go back home. So we went home and as soon as her daddy got here to see here she had another tonic clonic seizure. She went to bed and finally went to sleep around 10:30 last night and was up at 3 this morning. She only had 2 tonic clonic seizures before 8 this morning. She went back to sleep and slept till 12 today. She had a pretty good afternoon. While she was eating her supper she had a tonic clonic seizure and came out of it and went back to eating. See Destany pretty much has quit eating so eating for her is far and few. So when she does eat u want to make sure she gets what she wants. She finally fell asleep around 9 tonight so maybe we will be having a better night tonight.

Wednesday, June 22, 2011

Last night was a better night. Destany actually slept most of the night and so did I. She got up this morning and had a pretty bad tonic clonic seizure followed by a generalized seizure that last around a minute and a half to two minutes. Shortly after this she went back to sleep. She got up around 10:30 this morning which is early considering she usually doesnt get up till 11:30. This afternoon we went to get her blood drawn for levels to see if they are off somewhat which would be the cause of her increase seizure activity. She did well on the ride down there with only 2 seizure and on the way back had 1 quick seizure. Tonight she had a pretty stong tonic clonic that last 40 secs then lots of small ones until bedtime. She is tired and just put her in bed. Hope we have another good night tonight.

Tuesday, June 21, 2011

Well i didnt post yesterday because Destany was not to where i could get on here and blog. She woke up doing pretty good but as the day progressed her seizure activity got worse. She had a rough time of of yesterday evening, got to the point where she was trying to get sick. She went to bed around 8:20 last night and moaned and groaned till 1:00 this morning. At 3:00 this morning her seizures started in again and her trying to get sick. She hasnt really rested well at all today had a couple tonic clonic seizures today and lots of small jerk seizures. The doctors office called me back today and i will be carrying Destany down for some blood work tomorrow. Thanks to my mom she will be going with me since there is just no way i can go by myself with Destany having as many  seizures as she is having right now.
Right now I ask everyone for prayers right now for my little angel cause when she struggles it breaks my heart to watch her do this and knowing that there is nothing I can do.

Sunday, June 19, 2011

Another bad morning

Well Destanys feeding pump started going off at 6:11 this morning so i got up and went to turn it off. When i turned it off and started to check on Destany I realized destany was in a seizure. So i sat with her to see if she was going to come out of it and of course she didnt. At this point went to grab the diastat and ended up haveing to give her the diasta at 6:16. She continued to seize until around 6:24 when she finally fell asleep. It is mornings like this that i wonder how long she had actually seized without me knowing. I also question God at this point and ask him why he keeps putting this precious little girl through all this. Well Destany slept till around 12:30 this afternoon. When she got up she was pretty spaced out and been that way most of the day. She went to bed tonight around 8:20 and went right on to sleep. She is a tough cookie.

Saturday, June 18, 2011

This is a post i had posted when Destany first got sick to kind of let you know how it all started I will keep posting other journeys throughtout the next few days. Destany was born a normal child. She had a few illnesses but nothing really major, at least not until April of 2001. Destany was only 2. She had been sick with an ear infection and fever and I had taken her to the doctor on Tuesday. They gave her some medicine and sent her home. Well we gave her the medicine and some Tylenol for the fever. It was a long night because her fever was so high and she was restless. The next morning she got up and was playing with the movies and put one in to watch it. Then on her way back to me she collapsed in the floor. I thought she had just tripped so I got up and went to her and picked her up and she collapsed. This concerned me so I put her on the couch. I looked at her and her right arm was limp. This concerned me so I called her pediatrician and they said bring her into the office. I called my husband and he picked us up.
I was just not happy with this. My mother in law worked at a doctor's office at the time. So we took her there. They examined Destany and took x-rays to see if she fractured her arm. While they were looking at her x-rays, Destany had a seizure in the doctor's office. God was telling us something that day and put us there for a reason. I had never seen a seizure or experienced one. The doctor's office called the ambulance and we were taken to LeBehoneur Children's' Hospital in Memphis, Tennessee. We live in Covington, Tennessee so we didn't live too far away. When we got there she had another small seizure. They did an MRI, EEG, spinal tap and a ct scan to determine what she had. They did blood work and still couldn't find out what was wrong. The MRI and eeg showed that she had two lesions on the brain and was having seizures and diagnosed her with viral encephalitis. They called in the infectious disease doctors and they put her on all kinds of medication.
At this point Destany couldn't walk, talk, eat or even smile. This just broke our heart to see our little girl do nothing but lay there. She started improving and getting better. They were going to do a swallow test to see if she could start eating by mouth but she failed this one. Then all of a sudden she started running fever and caught pneumonia while in the hospital. Her fever hit 104.8 and would not break. They didn't expect her to make it out of this because her fever wouldn't break. Finally it did. They did another swallow test after this and she still failed it so they had to put a G-tube in her (hers was a mickey button). They sent some of her fluids from her spinal tap to CDC to see if they know what caused this and they still to this day don't know what caused any of this.
We came home after being in the hospital for 5 weeks and 4 days. She has speech therapy, occupational therapy and physical therapy. It is now December and she doesn't have the tube anymore it was taken out in October before her third birthday, which is October 29. She has just started rolling to get where she wants but the right arm is still real weak. Both her legs are going pretty good. She will also scoot to where she needs to go. We go back in April to do another EEG to see if she is seizure free and if so they are going to wean her off her tegretol. Our goal is to have her walking by next Christmas. She is talking back on the normal 3 year old. She is learning her ABC's and colors and how to count. She is a very smart little girl. May God bless each and every one of you who has gone through a traumatic experience like this.

Today was a good day Destany got up around 1030. She didnt eat nothing today but has been pretty happy today. As far as seizures just a few quick seizures which is better than yesterday.