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Sunday, February 10, 2013

There is no place like HOME

Well Taylor and I are home again after spending several days back up at Primary Children's Hospital.  He has not been doing great these last two weeks and we have had to use our emergency seizure medications several times as his seizures wouldn't stop.  But it got to the point that they weren't working anymore and our pediatrician just said to take him to the ER at Primary's again.  Now bad mother that I am, I first had friends over for my dessert morning and then we left for the ER on Wednesday.  One thing I have learned that unless we have a true emergency we don't cancel or change our routines if we don't have to.  Everyone stays happier that way.

Turned out that Taylor was constipated again.  I know people wonder how I could not know that as this happened before at the end of August.  But he has been pooping and on laxatives this whole time!  But it turns out that his intestinal muscles don't have much tone anymore so we are adding in Senna to his medication regime and am hoping to avoid another "clean-out" visit for awhile.   With everything going on in his gut, getting 3 GALLONS of laxatives put into his system through an NG tube and hosptial enemas (an entire IV bag put into you know where), his seizures went even more hay-wire with seizures every two to three minutes.  So he was put on atavan to knock him out several times and keep the seizures down while he got his system back to normal.  He developed a gastric bleed from all the trauma so he is currently on antacids to help his gut heal back up.  But he is home today and is happily curled up in his bean bag.  After 5 days of not eating and drinking he is having a hard time getting his appetite back but he will do a few sips or bites of food at a meal now.  The pediatrician told me that this is a common problem that hits kids with CP in their teenage years and then just gets worse.  I hope this won't be a common experience for him.

I stayed up at the hospital with Taylor and then came home Thursday and Friday afternoons to shower, help out at the kids' school, do homework, clean up etc before heading back up but the majority of the work feel onto Jeremy's shoulders as he kept home life running.  On Saturday Jeremy took publicity photos of Allison and a few of her cast members for the school play Annie:
He had some drama this weekend with a person helpfully painting over their brand new studio floor they put in.  So he has been busy helping the person try to fix his mistake and scrape off all the paint.  Knee pads and a willingness to shake his head and smile has stood him in good stead.

I appreciate all the prayers on our behalf this week.  And I am glad to be home and am so looking forward to sleeping in my own bed and not opening my eyes for more than an hour at a stretch!

Other news of the week is that we had a fun Super Bowl get together with Jason's family as he made trays of wings for us all to over indulge in.  Our dishwasher bit the dust and Jeremy manfully performed CPR on it, taking everything apart completely, cleaning it and putting it back together.  It worked but now it is dead again so I think we will be dishwasher shopping again.

The most touching moment this week for me is having the kids call me to be part of family prayer and hearing them pray for Taylor.  Finding out that Allison had chosen to fast Thursday for Taylor just brought tears to my eyes as I was eating my chocolate stash in my purse.  Somethings you realize you didn't teach your kids, they just came blessed with those attributes and it makes you grateful.