On the homefront..

A few highlights of life at home with 8 kids and 1 parent:

Mark called to say that he would be late coming to the hospital on Saturday. Jordan was trying to be helpful and decided to run the dishwasher. We were out of dishwasher soap and so he filled the tray with ultra concentrated Palmolive dish soap. After spending hours cleaning suds that filled the kitchen and spilled into the living room, there was only one thing to do...laugh. At least Jordan was trying to be helpful. I so wish he had taken pictures...but I think he had his hands busy (and at least the floor got cleaned too!)

There was a H1N1 scare at school. We thought that one of the staff had H1N1. When Aaron had a slight temp, everyone at home had to go into high gear and moved Elijah out of the room they share. H1N1 or regular influenza would be life threatening to Elijah because of his immune deficiency. Moving a child with lots of medical equipment is never an easy task. And the next day after all of that work, we found out that it was a false alarm and there was no H1N1 at school.

Each morning, Aaron and Kenna get on the bus at 6:20 am. Hope leaves at 6:15 am. Jordan and Kaden are next out the door with their buses leaving around 7:30 am and then Elijah at 8am. Finally, Brennan leaves around 8:20am...that is 6 busses..7 kids and 1 adult to get them all out the door. Keeping in mind the time before school is with out meds that help many of the kids be able to focus and stay on task.

Mark is really amazing. With him being the one who has kept things going at home, he has had the harder task on many levels. I don't ask a lot of questions....I just like to know that at the end of the evening, all of the kids are in bed and accounted for. There are some details I just don't want to know! Our PCA's and nurses have helped out and picked up extra hours this week as well. We can not thank them enough. What a gift they have been...

Maisy is slowly tolerating her feedings....very slowly...she is no longer wretching much but she is drooling like you wouldn't believe...we are going to go up to 3/4 strength formula overnight and see how that goes. She should be very tired..only sleeping about 1 1/2 hours total all day and since she woke up at 3:30 this morning. We have been keeping busy all day trying to stop me from thinking about my lack of sleep! It worked...

Early morning update..

Sweet, mischevious Maisy has been up since 3:30am this morning and her tired, tired Mom would give anything to find a place in the hospital to take a nap later in the day. Since that is not going to happen, I will focus on my job at hand...keeping vents, g-tubes, IV's and oximeter probes on Maisy's body where they belong...and keeping Maisy's sweet smiles coming..
Maisy handled her feeding pretty well for about 4 hours overnight. That's a good sign. One little step forward..I am afraid to sit her up because that usually starts the wretching...but it's a new day..and I think I will look forward instead of back..
That will be my plan..