Couple of bad days

To say the least, things have been pretty eventful at our house. Dylan had been having tons of seizures lately. Some might be saying, what's the big deal. Well let me fill you in on the details. Seizures suck. They mess up everything, from eating, sleeping, emotional and mental well-being for both Dylan and us. His neurologist has been out of town, so we have to wait until she gets back to "adjust" his meds (again???) On Friday, I was getting stuff out of my closet and there was a musty smell.... so are you asking yourself was their carpet wet. Well no, but we can't figure out why the heck the carpet stinks, so my clothes and shoes are spread out between Dylan & Brianna's rooms. Friday night, Dylan was puking and had to sleep in our bed. Try sleeping with someone who is completely rigid in their sleep. I got very little sleep. On Saturday, I went scrapbooking with a dear friend. Thanks Judy!!! i got to escape from our "reality" for a few hours. Then when I got home I was really sick. Dylan and I have been sick...... When will it pass?

Today is a pretty "bad" day. we haven't been very productive, since I'm sick. I've been peeling paint in the hall bath in an attempt to finish that project. it's only taken 2 months. hopefully one of these days it will be done.

we still aren't' sure what is going on with my closet. I've been also busy today planning the cookie swap I do every year. i was pleasantly surprised when I got a phone call from someone asking me if they could bring me dayquil. That was a nice surprise. It reinforced me to think that there are actually people that care about us and want to help us. We usually feel pretty isolated. It's not as easy for us to go to events without a lot of notice. We can't just call anyone to watch the kids, especially Dylan. Our nurse already cancelled on us 1 day last week, so you can see how difficult it is to do things. We don't want to be viewed as "party poopers", but our reality is just different from the typical person that doesn't have a special needs child. when you don't have a special needs child you can pretty much call anyone you want to watch your kids. I can't call the local teenager, because I honestly don't know how they would handle Dylan having a seizure, changing diapers on a 5 year old, giving meds in a feeding tube, just dealing with a feeding tube, Dylan's yodeling, Brianna's fit about Dylan being loud, and a million other things that goes along with watching our kids. anyhow..... I am grateful for my friends that actually stop and think what we might be feeling, and make a sincere effort to "walk in our shoes."

All I hope is that tomorrow will be a better day!!!