Friday, October 16, 2009

Mind Games

My mind likes to play with itself. Gary is having a good week. His skin is still a little active. I don't like that much but his energy is good. He slept a lot this week. Last night and the night before though he had a tougher time. For whatever reason, he woke up about 11 and screamed and cryed for 30 minutes. Nothing I did helped. I finally gave him some tylenol and benadryl. I ask him every question. What hurts? He screamed in furious rage, "UP MOM!!!!!!!!!!!! " translation, shut up Mom. Really Gary? If you weren't already crying I just might spank you. Poor baby. He can't tell me what hurts, or what is going on. After the tylenol kicked in he calmed down. He has a runny nose. His face was so swollen and his skin was so red after he got done crying. One of my tactics is a shower. I have always put my kids in the bath or shower if they won't stop crying. It is the first place I want to go when something hurts or I don't feel good. It helped him though. If anything it can be a distraction when I can't get him to stop screaming. I may call the nurse today to run it by her but no fever, no weakness, not many other symptoms so I will keep an eye on him.

I was talking to a very good friend on the phone the other day. She said she just checked my blog and wants to know how my other kids are doing. Your wish is my command.


McGuire has kicked his 5th grade year off pretty good. McGuire has always been a step behind his age group. SINCE birth he has been delayed. But he always gives maximum effort. Homework has been a big struggle at home. It involves tears often. I think however, is adjusting to Mom being home all the time again. I think with all the frequent hospital visits an abscence was noticed by the older two. Well guess what, MOM is back. Butts in gear. Homework got easier as the week went on. We even got to sit down together and figure it out together. It is frustrating for me, but rewarding. We are throwing a Halloween party for McGuire and his class at our house. Uggghhh what I am thinking. This year for McGuire's birthday we didn't really get to celebrate too much because we just been diagnosed with Gary's JDM. So to make it up, I told him we could have a Halloween party. I even did video invitations. I burned 30 copies of it and put them in a plastic treat bag that had a pumpkin on it. Here is what it looks like:


Elexis is doing pretty good. I was always concerned about her emotional status. She is stabalizing though now that we are going to the hospital less. School is going just fine for her. She also has homework. I feel like I have to prepare for a battle when they walk in the door after school. Nobody wants to do homework! That is ok. We are establishing a routine. They recently went to a 50's Dance at school. We had a lot fun dressing them up. We got creative. Elexis is also excited to invite a few friends to her brothers Halloween party. Yesterday we were watching old video's of her. SHE WAS SO CUTE. One video was when Gary came home from the hospital. My sister taped her trying to take Gary out of his carseat. She adored him. Still does most of the time. Here they are at the 50's dance:

I am looking forward to girls overnight trip to Leavenworth this weekend. My sisters and I are heading over to scout out possible wedding sites for next year. At the same time I am a little nervous to leave Gary. Hopefully, everyone will survive!


  1. O.K. first off how creative on the Halloween video invites.... That scared me! Ha! I've always freaked when I heard the Halloween theme song or watched those movies.... What a nerd, I know! Anywho great idea on those. How cute is that pic of your older two dressed up in sock hop attire.
    Sorry to here Gary hasn't been feeling well. I know when my rash acts up and muscles twitch and stuff I can't sleep either.
    Hope he feels better soon. You seem like such a Great MOM!
    Summer :0)

  2. I love the Halloween party idea. You are a very brave lady! I hate to hear that Gary is rashy and not sleeping well. Kya had a terrible night last night, but we missed nap time because of the party and taht is not good. Kya used to do that middle of the night scream and cry for about 30 minutes to an hour for no known reason. It worried me so much. But, now that you mention it she hasn't done it in about 5 or 6 months! I would just sit and rock her or hold her, but sometimes she wouldn't want anything touching her like her skin was on fire! It was so strange.

    We will continue to pray for Gary and your family! I understand how it affects everyone. Poor Kaysa had a meltdown about 3 or 4 months after Kya's diagnosis. It just takes time for all of us to get a "new normal" and once we do, it changes again! That is what I love about the roller coaster ride of this disease!!!

    Just remember, if you need anything I am an email or phone call away! You are a fabulous mom and have it all under control. Hang in there Mama Tiger! You are in our prayers.