Thursday, April 24, 2008

Inside Dillon's Mind

Hi Everybody!
Sometimes I have bad days, I try to tell Mommy what is wrong but she just can't understand my language. I really have no language to tell her, oh how I wish I could let Mommy know what I need.
Yesterday was a bad day for me. I got constipated again. If only I could tell Mommy that she needs to give me the fish oil again. She doesn't realize that the powder Omega 3's aren't the same for my body as that good fish oil - even though it does stink awful bad! Daddy had bought the powder and asked Mommy to make sure she uses it before it goes bad so Mommy has been adding that to my food instead. My seizures are bad now too, if only I could talk to Mommy and tell her that the seizures started after I had been off the fish oil for several days. My brain needs the fish oil to help it function properly.
My nurse is named Miss Barb, she is really nice to me. She cheers for me and talks to me, she knows that I can understand her and that I know my Mommy. She even says I understand more of what is going on than Mommy! (I understand Mommy just doesn't want to hope too high, but I like Miss Barb)
So anyways, back to yesterday...Mommy and Miss Barb were patterning me when I really needed to have a bowel movement, but I just couldn't I even started bleeding because it was so hard. It really hurt my stomach, I needed to go but it was too painful! Miss Barb tried giving me some things to help me go and Mommy had already given me some mineral oil, but nothing was working.
My speech therapist, Miss Sue, came. She put some really cold things in my mouth and then cheered when I tried to make a face to tell her to stop! Why do they think that is good? I just don't understand why they put cold stuff in my mouth!
Then my Physical therapist came, Miss Susan. She started to work with me (why doesn't she get the point that I always fall asleep when she is here because I don't want to do anything!?) and I went into another violent seizure. I don't like my seizures, I can't understand what is going on around me when I am in it, I can't stop my arms from jerking in the air. I can't stop my head from being thrown backwards. I can't stop my tongue from sticking out and worse of all, I get so tired afterwards. But this time, as soon as the seizure stopped I vomited ALL my food. This was the most I had ever thrown up. The doctors tell Mommy I can't throw up. I wonder if they would like me to throw up on them next time I am there? Hummm....I'll have to remember that! Next time one of them talks like I am dumb and don't understand I am going to throw up on him! So after I vomited and really scared everybody, I finally was able to have a bowel movement, but it hurt so bad I got a hemroid! Then my oxygen levels dropped. I was really tired and in a lot of pain, I just didn't feel like breathing anymore. Mommy, Miss Barb, and Miss Susan thought I got food in my lungs when I threw up but Miss Barb listened to my lungs and didn't think so. I was just too tired to breathe. After a few minutes everyone calmed down when I started breathing deeply again.
The rest of the evening I was pretty tired. I slept really good for Mrs H at church then Mommy and Daddy got a bite to eat at Wendy's with some friends. I had another bad seizure there. I don't like being there with everyone looking at me. It is hard to get my wheel chair out so Daddy just put a towel on the table and I rested there. Jay got to sit in a high chair and eat food, all I can do is lay still on the table and listen to everyone talk and laugh.
I am so thankful God helped Mommy to finally understand that she should put me back on the fish oil because since she gave it to me last night I have not had a single one of my strong seizures!! I know people are praying for me, and I really hope these seizures will stop so I can learn to see and hear and move! Most of all, I want to be able to communicate with my Daddy, Mommy, little Brother (I want to tell him to be nice to me and quit crawling all over me!!) and all those who love me and talk to me like I am a real person!
Well I am signing off now before someone catches me on the computer! Bye!


Anne said...

Dear Dillon,

I'm so excited you are doing much better! I've been praying for you!

Auntie Anne :o)

Anonymous said...

Hi Dillon!
I just wanted to tell you that I also have to be on the fish oil. For some reason, when I go off it, I screech and stutter before every word and I can't get a thought out very fast. It is very frustrating for me, because very few people have the patients to listen to me. Tell you parents not to feel bad, it took me running out of it three different times before they made the connection, so your parents are pretty sharp. I always thought it must do something in the brain to help the nerves conduct properly. Zachary used to always smell like a fish and we all thought he just had fish like b.o.!! But it turns out he was chewing his fingers and running his hands through his hair. :-) So if Jay smells a little fishy…. You are doing real well on your board, we all watch the video!! Keep up the good work. "Little by little, line upon line….
Praying for you.
Your buddy,
Andrew Z.

Anonymous said...

I am so proud of all your hard work. It must be hard to have so many things you want to say without a way to express them.
You really have a great mommy. Sometimes it is difficult for her to know exactly what you need right away, but she always works hard to figure it out. She never ever gives up on giving you the BEST she can. God knew you when you were still in her belly, and He still knows and loves you now. And He knew that your mommy was the most perfect mommy you could have.
I know I don't always take the time to talk to you at church, but I know you are a very real person, and I will try to say "hi" more often. I think you are a pretty cool little boy. I hope the fish oil does its work and the yucky seizures stop.
Have a really good day!
Mrs. M.