Destanys Make A Wish

What a great day!!  Destany started out with getting the living decorated with balloons and streamers to start her make a wish off. Then we all took pics and then loaded her up in the limo and went to White Oak Farms in Rosemark so she could pet the horses and she actually got to ride in a buggy pulled by a horse, it was so awesome. We then left there and went to Millington Wal-Mart and boy did she do some shopping we spent about 2 and a half hours there. She was give out at this poinr so we decided to go eat at I Hop. Destany ate half a pancake and she was done. We ended up getting home around 6:30 and she was exhausted. She had several small stare off seizures today but thankful no big seizures. I will remember this day for a very long time and so glad that we got to enjoy this day with our little girl. And i am thankful to the Make A Wish people for making it all possible.

Destany comes home

Destany came home yesterday evening. All results came back negative so we know nothing different then when she went in. Her Urologist called today and her test will be on march 22 so i will be taking her to that testing. they are suppose to some kind of study to check her kidney and bladder. On our way home last night she had 2 tonic clonic seizures and then had another as soon as i got her into her chair to take her in. I text the nurse and she seems to be having an okay day started out a little sleepy. Tomorrow is her Make A Wish and I cant wait. I will post pics and all on all this tomorrow.

It has been a long few days

I picked Destany up on Friday night and she seemed like she was really fatigue and having lots of seizures. I thought it was she was tired so she went to bed at normal time and slept all night and got up around 12:30 by this time she had already had 3 tonic clonic seizures. She went back to sleep around 2:30 and didnt get back up till around 5 that evening. She had several more seizures and was very lethargic acting. She only had 2 wet diapers Friday and 2 on Saturday.Sunday was about the same as Saturday but I knew she was going to see Dr McGregor on Monday so we just waited it out till Monday. Monday got here and she woke up around 11:30 in a pretty good mood even though she was real quiet. As I was dressing her she started having this seizure where her stomach was sucking in and like she was trying to gasp for air. It was a scary sight. We made it to the doctors office and of course Destany had a tonic clonic while waiting on the doctor. Went back saw Dr McGregor and she sent us straight to the ER. So the did a urine test, ct scan, chest x-ray, and spinal tap.The urine test and x-ray all came back good. We got into our room finally about 10 that night and Destany was up and down most of the night. At about 4:20 Tuesday morning Destany started seizing and had to have a 17.5 diastat and continued to seize and had to have another 10 diastat at 4:35.  She finally quit seizing and went to sleep and slept most of the morning. She had a fairly descent day even though she had only a couple of diapers on Tuesday. Dad stayed with her on Tuesday night and said she had a descent night and morning with only a couple of Tonic clonic seizures. We had a urologist consult today so we had to go down and have an ultrasound done on Destanys kidney and bladder. Wont know those results till tomorrow. We got back got her settled and got her meds in her and she went potty so right now everytime she goes they have to cath her to make sure she is emptying the bladder. As soon as we got wet diaper off and dry one on she started seizing started out as Tonic clonic and went into a stare off. They had to give her a 10 and wait and then gave her 17.5 and still wait. This seizure lasted anywhere from 30 to 40 mins. Scared me to death i just knew we were headed back to ICU. The next thing would have been to load her with valium and the doc said if the did that she would have to go down stairs to ICU. Thank god she came out of it. They did load her with some dilantin and she has had only a few more this evening. Our goal is to be out of here tomorrow cause Destany's Make A wish is Saturday. Thanks everyone for all your prayers and continue to pray for this precious little girl she has been through so much.