Austin keeps me awake for 2 - 4 hours a night, it's not like it's just straight through either. He'll have troubles, I'll suction his mouth out and almost fall a sleep. BAM it's another time where he needs to be suction out again. This goes on for this 2-4 hours. Sometimes it's simply he wants to be held for this amount of time or he's up because of seizures. I normally go to bed with Justin now which is about 9 - 10 just in hopes I'll be able to get some kind of sleep so I'm not a zombie. On our really bad night's I'll get about an hour of sleep through this all because either I got home work to do or hear him gagging so much and worrying. I live with this every night. Afraid to fall a sleep all the way since Alex is a hard sleeper afraid one of these days he'll aspirate and cause pnemonia. Which means probably us in the hospital dependingo n what happens.
I get woken up by Justin. If Alex knows I had a very bad night he will take both kids out of the room and let me sleep. But lately since he's working so much that's not something that's plossible. We get up about 6 - 9 depending on when Justin feels like everyone needs to be awake. Feed him breakfast. 9 am is medicine. Give Austin his 5 medicines. Some time after that both kids will want mommy. Not one at a time but I'll be in the middle of cuddling with Justin and Austin will have a seizure and need us to calm him down.
Oh wait don't forget about appointments! Today we had a 11 o'clock one so I got to get myself ready first while Alex is showering to make sure one of us is with the kids at all times. If you leave Austin alone there is a chance he might throw up.. What if you're not there? More worrying of course. Than of course Justin needs to put on his cars movie or toy story. You scramble around, making sure he doens't put change in daddy's ps3 (which he accomplished today between my 5th and 6th time suctioning out Austin. Of course Alex leaves at 930 and I'm here with the kids on my own. I get a call from a friend saying she needs an ear so as I have Justin screaming at the top of his lungs I try to calm said friend down. Run out the door with the diaper bag (with extra bags, diapers, clothes since Austin throws up, 2 machines and so on) first before bringing the kids out. Grab Austin and throw him over my shoulder like a sack of potatoes and grab Justin to run up the stairs. Of course 2 year old mind he has to grab more toys for the 1 hour appointment.
Head towards Children's Close to Home for PT. Justin is being grabby with the toys. Chasing after him to share than he see's our OT person and wants only Hilary. So she is taking about scheduling since she needs a day off next week and trying to RE PLAN for that week with my schedule so I can make sure he fits in a much needed OT session in. We've missed to many with the hospital stay. Liz comes and gets us for PT. Chasing after Justin not to dirty all teh clean toys. Distract him. Austin throws up 10 times (or has troubles) during this hour long time. Liz and I are both worried and Justin's jumping on my back. On the way home Justin sees helicopter stars talking about how much he likes the planes and helicopters. Fall a sleep holding his brothers hand.
Now the challenge to get diaper bag, 2 machines and both kids in the house. Taking turns I bring machines and Austin down and run upstairs to get Justin. Both kids are a sleep so means alone time. Which means I can get the TON of home work I need to do.. Do my online work for Chacha, make sure I do my MOD 'job' for Cafemom AND work on my groups I own! It's only 12:42 as I write this and I'm already tired and feeling like another Mountain Dew. Glad today is only one appointment.
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