Just Hanging Around

Today was a very stressful day for me. Lil man woke up literally drowning in his own secretions. We had the HME supplier come out yesterday and bring out a different kind of Trache humidifier as the heated one he was using wasn't doing the trick. Well the cool mist worked TOO well! The setting weren't properly set when the machine was brought out so that didn't help either. It took me ALL day to get him back to baseline but we got back, phew...as I was really worried this morning! I a most thought we were taking another trip back to the hospital. But a few breathing treatments, ALOT of suctioning, and some oxygen he was good to go. Danny has not been sleeping well so for the last three days we've been up around 3:30am...UGH! I hope tonight isn't a repeat. We have decreased his meds & TPN, increased his feedings, and he is off all pain killers once again. Alot has been going on since we've been home, but mostly all for the better. He is doing so much better being in his own environment. I hope in the next week we will be close enough of cap off the PICC line, but we'll see. His stools started to increase today pretty badly so I'm not sure if it's the feeding or the set back with what all happen this morning. I will ride it out for a couple more days to see if things get better.
Avrianna is absolutely LOVING school. She comes home and is a chatter box for the first 20 minutes about all that has happened at school. She LOVES riding the school bus and now refuses for me to wait for her at the end of the driveway for her at the end of the day.....she wants to get off the bus by herself. Avrianna enjoys her teacher, which makes me very happy! The public school system is growing on me, but the jury is still out.
I've requested another IEP meeting next week for Danny as I'm not impressed with the therapy schedule for him this year. I'm glad I am going to be able to sit down with all of them and get this resolved to be in the best interest for lil man.
Many have asked how I am doing since my treatment.....I'm doing ok. I can't say I feel any better, but the medicine isn't suppose to help with the symptoms I already have it is suppose to slow the process down. There is no cure for MS so they hope with this medicine I can slow it down. With the lack of sleep and my OCD attitude to have everything done and put away I've been pretty run down lately. My vision still isn't right and I can tell I'm weaker then normal. I hate that feeling!! The shots are really nothing, it's the 10-15 minutes after the shot that can be alil discomforting, but I can deal with it if it's going to help. I'm amazed how fast and furious this disease is......I WILL FIGHT IT, every step of the way with all the energy I have!!

Happy Birthday Brenda ~

Today is my lil sister's birthday! Hope you had a wonderful day!! Love YA

Labor Day festivities ~ we had my mom's side of the family here for a day filled with fun. Just hanging around the house swimming, eating, n drinking....maybe too much, LOL. All of a sudden I realized the "elders" are going down the slide, YUP my mom, my aunt, and of all people my 77 yr old grandfather who doesn't swim well. What a hoot! Everyone made it and no one had to call 911, LOL. Dan and I put on a spread.....Dan smoked a turkey, grilled a tenderloin, we made twiced baked potatoes, corn on the cob and tons of snackies. It was a great time!

The pool was full most of the day, I didn't get to go in the pool yet, but hoping to be able to sit down and enjoy the house one of these daysYing n YangCan't forget lil MAN!My mom the first of the dare devils to go down!Then my aunt....guess she didn't learn anything from her sisters ride a few minutes ago...This is a women whom I've NEVER seen do under, go down a water slide cuz the kids said she wouldn't get her hair wet, heehee so foolish!!!!Yeap then the big Daddy of them all....my grandfather! I couldn't believe it...talk about living a second childhood. It was GREAT! After he recovered from drinking half the pool water.The Grill MasterMy grandmother and her mother (my great...the kids great great grandma). I'm sure wondering what in the heck got into my grandfather, LOLMy BIL flying his airplane at our house....no casualties this time, LOL

Danny in his "NEW RIDE" ~ See I do use it! Not often enough, but it has gotten some use the last couple weeks. It's hard for me to slow down and use the lift instead of just picking him up and doing it myself, but I'm working on that. I don't need something to happen to him or myself. I would feel AWFUL! As my MS symptoms going into over drive I have to except that I need help as I've gotten weaker then I used to be. Here he is just hanging around and he doesn't seem to mind it so that makes it easier.Cruising down the hallwayGetting ready for the shower :)

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