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.