Thursday, February 2, 2012

Quick General Update

It's been a quiet few days on the doctor front.  We have kept in close contact with Eli's medically complex doc and have spoken with the geneticist's dietitian multiple times but other than that not much.  The dietitian is working hard to come up with the perfect feeding and fluid schedule for Eli.  That's tough to do taking into account all of the issues that are going on with him.  She's not rushing into any changes or decisions so we are patiently waiting for her final recommendations.  Eli is up to 2 teaspoons of cornstarch a day mixed into feeds, and today we will trial out 3 teaspoons.  So far his GI system seems to be handling it a bit better and this morning was one of his highest blood sugars in quite some time.  He has an issue going on with a lymph node in his groin that we are keeping a close eye on.  He also seems to be currently having a flare up of his skin conditions and we are working to keep that under control.
We are laying low this month and allowing his body to rest as much as possible.  As of right now he is rescheduled for surgery on March 6th.  We are hoping to keep life as calm as possible for him between now and then.  Also hoping to get the feeds and fluids and sugars nice and stable by that point as well.
We have just finished up training a nurse and we are currently working to train another nurse.  We are going to end up having to have 3 nurses to get our weeks schedule covered.  They are working to find a 3rd nurse and we will see what we think tomorrow when we possibly meet an option.

The older 4 are doing pretty good.  Emily is staying busy.  She's been hanging out after school with a friend next door and has really enjoyed getting to know her.  She's getting prepared for her honor choir concert next week and she is also making her final selections for her song for the talent show.
Jace has been busy after school with a friend from next door who is also in his class.  They spend almost every afternoon together.
Benjamin has been struggling.  He's apparently been staying up half the night playing his kindle fire and nintendo and as a result of this he's incredibly grouchy and having trouble staying awake at school.  He's gotten into alot of trouble in class, and ended up going to the nurses office yesterday to sleep.  We keep taking his things away and then he just ends up stealing one of the other kids items.  It's a challenge.
Ariana is doing good. She's getting ready for her 5th birthday!  She's super excited to be turning 5 and is happily planning what special treat that she wants to take to school with her.  She's also making her birthday present lists and WOW.  She wants a real live pink puppy, a unicorn with wings, and the perfect dress to marry her king.  :)
Other than that not much new.  I will get some more updates up soon.

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