Tuesday, July 7, 2009

Washed out

Well, 4th of July was a bust. We went to my parents and had dinner. That part was great. However, it rained ALL DAY. All of the fireworks were cancelled. It was just as well because I was wiped out. We came home around 8 and I sat down on the couch. I told Sr. that I was just going to sit down for a few minutes, and then I would get Lil'Man's food put together. He woke me up at 1:00 a.m. to tell me they were going to bed! Lordy, I was sore from being in one position for hours. I got Lil' Man's food and meds, changed him and we went to bed until about 9:30 on Sunday. Whew!

Lil' Man hasn't been doing much on the school front right now. He is feeling puny. He just wants to be held ALL of the time. He IS gaining weight, though. Probably because he isn't army crawling down the hallway 47 times a day. The skin around his G-tube site was looking pretty horrible. It is still pretty raw, but healing. Now he has horrible diaper rash. His entire bottom is peeling! UGH! We went through half a jumbo pack of diapers yesterday (that's about 25 diapers, for those who aren't in baby mode). We were just trying to keep his little bottom dry, and every time he pees he screams. Owie! I ended up taping a chux pad to him today in bed, just to get air to it. That seems to help a little. None of the creams we were using were helping.

I was able to get an appointment with a new doc in Chicago, at LaRabida. Lil'Man's neurologist referred us to her. I THINK she is a Developmental Pediatrician. She is going to coordinate therapy services up there. Lil' Man has been before for PT/OT, between Early Intervention ending and the school district picking up the slack. Well, now the school district is out of the picture, so we will probably be driving to Chicago at least once a month, if not more often. This is where Lil' Man got his wheelchair from. We have already talked about getting him a gait trainer, but I don't think it's gonna happen until his nutrition is a little better. Gotta get some meat on those bones! Although, with the way the budget is going in the State of IL, if we apply for it now, he might have it before he hits middle school. ;( We will be glad to be going back to LaRabida. It is on the beach of Lake Michigan - right on the beach. The link is above, I think they show the view. The hospital is on a little peninsula between a boat harbor and the lake. You can see Navy Pier from there too. Even though the neighborhood isn't that great, it is still nice to eat lunch out there at the picnic area. They have an all accessible playground too. Might get Lil'Man on a swing, since we haven't been able to get that up either (slackers!). Here is a little bit on LaRabida:

I will probably not be updating for a few days. Since my Dad had colon cancer last year, my sister and I are required to get colonoscopies every 3 years starting at age 30. Guess what I get to do Wednesday? Ya me! I might as well get it over with. Lil' Man has had it done many times, so I might as well buck up. Actually, I am looking forward to the best 2-3 hours of sleep I have had in 5 years! LOL!




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