Monday, Monday

A new week.  Thank God!  I know most people aren't lovin' all over Monday's, but I could really use a new week. 

Jeff went back to NC yesterday.  This is it, the final count down.  He has two more trips home before the one he makes to bring us back with him.  This visit our conversations were filled with Abigail and real estate.  Where to live there and what to do with our house here?  Of course, Abby is the wild card in all of this.  We absolutely can not move until Abby is stable. 

Get your Abby fix here:
Abby looks great!  She's gained a little weight, her color's good.  Her temperature is reasonable most of the time.  Our biggest problem is exactly what our problem was 8 weeks ago when she got sick.  Her belly does not work very well.  We changed her formula this week and her residuals are down.  I think that's good, but her tummy seems puffier.  The new formula is heavier and doesn't come back the way the old one did.  I'll be glad to see the doctor this week and see what he thinks. 



I love her wild bed head <3

I'm working on raising the feeding rate a little.  This is extremely important.  We have to make progress here.  Abby looks so good because she is receiving a huge amount of IV support.  They have doubled the lipids and added a lot of calories and nutrition in the TPN in the last few weeks.  The problem with that is that we are going in the wrong direction.  She's digesting a little less than she was and getting more through the IV. 

I didn't think there was anything wrong with that, but the doctors are concerned because of the dextrose content of the IV.  It's 70%; if you compare that to a normal IV of 5% dextrose, it's easy to see why it's a problem.  All that sugar puts her at greater risk for infections.  Bacteria apparently love high sugar and central lines?  Not so fun.   We need to move her off of it as soon as humanly possible. 

It's frustrating because she looks pretty good.  I have to consciously remind myself that she's still sick.  I just want all of this to be over.  I want my life back.  I want my girl back in school.  I want this hard, exhausting year to come to an end.  I want to start again. 

OK, toddler tantrum over (for now). 

A little bit of Emily in your life?
My sweet Emily.  She just loved having Daddy home for the weekend.  She was so cute sitting at the computer with him looking for houses in NC.  She has definite ideas about what works and what doesn't.  She is the most excited out of all my girls about moving.  I can't wait to see how she handles the reality of it. 

Emily very excited about the fruit basket and Daddy

She's had many, many seizures over the last few weeks.  She needs a neurology appointment, but I don't actually want to talk about any more problems. I know I have to just deal with it, but ugh.

She starts FCAT (Florida standardized testing) today.  She uses special computer software to read, which is not allowable on FCAT.  We have been in litigation for 4 years with the state of Fl. trying to get them to properly accommodate her.  They still refuse, even though it violates Federal Law (they were cited for it, but I'm not sure what good that did).  Emily will sit through a week of tests she has no hope of passing because she can't read from the booklet.  It frustrates me.  Actually, no, that's way too nice.  It makes me mad.  Education is hard enough without so much adversity.  Assistive Technology and standardized testing do not work well together.  I will send her to school everyday this week absolutely hating that I'm putting her in a position that she can not possibly succeed in. 

~Hannah~

Gorgeous Hannah had prom this weekend.  After mad dashes and a last minute dress change she looked beautiful.  This is why we stayed here.  These were the moments I didn't want her to miss and the ones I didn't want to miss seeing.  I'm thankful for the opportunity for something normal and fun.  It was a nice break from medical-land.

                                                    

Sarah Elizabeth:

There's not much new with Sarah.  She's the same funny, smart kid she's always been.  She's the comic relief around here.  She's moving right along with the resiliency most children possess.  I need to find a way to spend more time with her; for her, and because I miss her.  Even when she's here everyday and I get to be her mom, I don't want my time with her to pass by me because the twins have such significant needs.  As Hannah is graduating in June, I am very aware of how quickly it goes by. :)

All in all, we continue to hang in there.  I have more to do than I know what to do with, but that's nothing new either.  I'm beginning my week with an expectant heart.  I'm praying for progress for Abby, clarity for what to do about a house in NC and the one here.  I'm praying, as always, that His will be done. 

Happy Monday!