Finally, normalcy

Finally on Thursday, Sonora had no partial seizures. Friday, she was also seizure free. All day on Thursday I kept checking my email waiting to get news about how she was doing for the day from the nurse or the teacher. When nothing came I didn't know what to think. But I could just tell when she came home that she was feeling better. She had color and was talking and just perky. What a relief. Now though I think the plan is to still try and wean her off the one medicine. The only way to wean her is to first bump up the other med. I would be fine keeping her on both after the horrible week we had.

We are so blessed to have such a great teacher and nurse at Sonora's school. I can't even imagine not being with them for next year. The stress of having to hope for a great team again is just overwhelming. All we can do is hope that her new school is just as loving and understanding. So, now I guess it is time to start concentrating on moving again. Oh the stress never ends:)

And it continues

And it continues. Sonora had a great night last night and was fine this morning. She had one partial seizure at school that lasted only 30 seconds but of course that is enough to cause her to be tired. After drama and a nap she was feeling better until she came home. Poor Sonora was sick to her stomach and threw up. So now I have to decide is she sick from all the activity in her head, or that she hasn't eaten much today, or is it from bumping up the medicine so fast, or even is it a little stomach bug? Of course I decide to call the Dr, whom I think is probably thinking I over react, who doesn't think it was the medicine but to go ahead and cut back. So she is still having seizures on what she was on and maybe we need to start over, yet again.... I am so frustrated, and wish we could just go back to where we were.


So, this seems to happen to me often; I get complacent when there are not a lot of appointments on the calendar. As a result, I tend to forget to check to make sure everything is all set. I cancelled tomorrow's appointment for Sonora because she wasn't doing well. I cancelled the dentist the other day to go pick her up from school instead. I just realized that her spina bifida apt is during Spring Break which is great if we were going to be here! UGHH!! Working on getting referrals for her appointments and am just frustrated that I even have to bother. Really, Sonora is always going to need a certain set of Doctors and wouldn't it just be easier if we could make an appointment anytime with any of those specialists with out first getting permission from her PCM?

Oh, just another typical day. Oh and to top matters off my refill that was supposed to be ready on Monday wasn't ready and actually didn't seem to be processed at all. Really, can one thing go right this month???!!!

Tired and stressed

Well, you the know the old saying, spoke to soon? That was definitely what I did the other day. Last night and this morning a total of 3 partial seizures. Then, our daughter has been just confused and tired after each episode. We upped her meds again and with it I am left exhausted. Last night she slept with me and was agitated all night. I just want to it to all be alright. I want her EEG to be clean and have no abnormal waves. All we can do is continue with the meds and pray, pray that it will all be ok. To any of you out there who are dealing with the same problems, I pray for you and your family. There is no way to know that when you first become a parent that you can hurt so much when you watch your child in pain. My heart was ready to burst last night not knowing what was next or how much these seizures are hurting her. It is so hard, even though she is 6 she is delayed on her expressive language so to get any information out of her is so hard. Tomorrow is a new day, and all we can do is wait and see how she is. Good night and god bless to all those who have children with special needs and illnesses,

The weekend

Well, I am happy to report that my daughter did not have any more seizures this weekend. However, changing medicines that work with the brain is a little on the stressful side. Our princess who used to be the sweetest things turns into a screaming emotional child. She is demanding and yells at us, her brother and really has no patience. Now, I understand that some kids are like this anyway, but wow, a whole weekend of yelling gets hard to handle. If anyone has had to deal with the changing on medicine you know what I am talking about. How do you tell your son not to talk to his sister because she is just going to be upset. That is hard for a 4 yr old to understand. Not only that but I don't want him to remember his sister when they are older as a pain or not nice.

We have made it through the weekend and that is what is important. Our daughter is back at school today and apparently doing well since we haven't heard anything. I am not sure if there is a limit in what one can take. If anyone knows good ways to destress that would be great.

On a note about moving, I think we have decided on an area, now we just have to hope to find a good rental house. Ah, the stress continues.