what's going on.

Dylan got really sick last night. He had been home from school Monday and Tuesday and was not feeling his best. Always worries me, but Dylan is not a complainer. He has had the flu before and the only way I knew he was sick is because he would lay on the couch at times and whimper a little bit. No fever or anything.

He was complaining of his left ear hurting, but when they checked it, it was actually his right ear that is infected. Weird how that works, right? I took him to the doc by myself. I always have to buffer between Dylan and the doctors. He can't stand the sight of a person in scrubs. He assumes they'll hurt him. As many times as he has been in the hospital though, it's no surprise, really. When Dylan feels threatened, he is like a caged animal. He will do whatever he has to do to get away from them, regardless of how ugly it gets. I was thankful they were working quickly yesterday, and that the nurses listened to me. That's very important if you are a nurse, by the way. If a parent says he doesn't want you touching him or trying to make him laugh, please respect that. It makes it easier for all of us if you do. Many a nurse has gotten her feelings hurt- by me and Dylan.

Last night he lay in my lap while we waited at the pharmacy. He felt so bad. It always puts me on edge when he is sick. I'm waiting for the other shoe to drop I guess. If Dylan is sick long enough he can develop brain inflammation. Stay with me, Dylan. Stay here, with me.



However, I did some shopping the other day and I found Jude some summer shoes on sale! I got him 2 pair. Some sandals and some flip flops. I paid 8 dollars for both pair, so proud of myself. Isn't he cute in is Airwalk flip flops and his mama made shorts?


He's not sure how he feels about flip flops yet. He keeps taking them off!

Silly boy

I'm still hoopin'! Got a new one, it's 2.5 lbs weighted and foam padded! It's moves quicker so I like it better.

Progress.

Dylan. In spite of everything, Dylan is my rock. The one thing that can bring me down to this Earth when I get caught up in it. He's the one being in my world that is constant, as strange as that sounds... because Dylan is anything but constant.



Dylan saved me. From what, I don't know. I don't want to know. But he saved me.

If you have ever met Dylan or spent a measurable amount of time with him, you can see that he is not like other kids. He's sensitive, to put it politely, and set in his ways. He prefers to play alone; a leader, not a follower.

Dylan has taken us on a ride, that kid. In August of 2008 we thought we could lose him.

For those of you that don't know, Dylan has recurrent brain inflammation. Caused by: nobody knows. He's been tested and evaluated for everything under the sun, but nothing matches up. He's spent a great deal of the past 3 yrs on steroids and in and out of the hospital. The worst time being the first time. He spent 21 days in the hospital and his entire central nervous system had shut down. He learned to walk, talk, eat, speak- all over again. He's a fighter (quite literally). He has had flare ups 3 times since then, hospitalizations required each time. I always relax once we are at the hospital.. I know he is in good hands. It is quite scary though because you can never know when a flare up can cause brain damage. It's hard to think that a mother could see a silver lining in such a serious situation, but I suppose you have to to survive. When Dylan is sick, it's me and Dylan against the world. I have to fight for him-even though he is so strong, he is strength. But I find peace in it. It brings me back down to Earth. I step back and see Dylan, and he needs me to do that sometimes. To reconnect.

He has been flare up free for 2 yrs this February. 2 Years!!!! He hasn't taken steroids since May '11. The longest he has gone without getting sick on steroids is 6 months and he has pushed past that. I can't say I'm not always observing him -looking for signs of neurological disfunction.

Dylan had to repeat kindergarten this year because he just was not where he needed to be to go to first grade. He has had learning disabilities since before he got sick though, so we have been working with Dylan since early intervention days and then he was put in a DD preschool program, which was a Godsend.

But this year, something is different with Dylan. He's doing so incredibly well. This is the second progress report I have gotten this year that looked exactly like this:






My heart sings when I see this! My boy is going so far, pushing forward every day. His speech is clearer, his comprehension is better and he laughs- oh his laughter is the sound of angels.

I'm so proud of you Dylan, if you ever read this - know that I'm rooting for you all the way. I knew you could do it! <3

Oh, and thanks for saving me.