Thankful

Thanksgiving week-- like everyone else, I stayed busy getting ready.  I usually LOVE this time of year--I still do, but in a different way.  I was so happy to see my family to spend a few days cooking and eating and just enjoying being together.  But this year has been very hard and nothing feels the same as it did before.  Even when the twins were diagnosed I didn't feel the weight of it each day that I do now. 

Something about walking this road for so long only to experience the year we have has left me feeling a little disconnected.  I miss my routine and our church.  It helped to center me in a way I'm struggling to find now.  We've tried a few churches and decided whomever wrote Goldilocks was probably church shopping at the time.  This one's too small, that one's too big, another one just doesn't feel right, and I'm desperate for just right.  I know it's out there, so we'll keep looking. 

Abby had an appointment with her GI doctor the day before Thanksgiving.  I really needed some help with her because her nausea was so much worse and I didn't know what to do.  We also met with the nutritionist who could not have been more helpful.  Abby lost a little more than 2 pounds in the month since we last saw him.  That was cause for concern.  We decided to try a different formula (again).  This is one I've never heard of.  All of the proteins are completely broken down, so she should only have to absorb it.  It only comes in 1.0 calories (she's on 1.5 now so she needs less volume).  She'll be getting less calories for a while, but the hope is that she'll tolerate it better so we can increase the volume.  We are also upping her IV sugar from a D5 to D10.  It's not much, but it offers a few more calories.  We are close to needing TPN again, and just trying to avoid that. 

Everyone else is doing well.  Hannah was home for a little break, Sarah is good and Emily is healthy.  I am beyond thankful for those things. 

This year, I'm thankful that our family is back together and we are moving along.  There are always things to be thankful for.  It's not the automatic smiley thankful for all that's good in our lives.  It's looking around knowing what could have been, and what might still lie ahead and experiencing gratitude for simply being here; for having all of my girls and my husband with me around the table, even if Abby couldn't eat.  It was gratitude for the 12 years she did eat, and as I write tonight, gratitude because not even once that entire day did I wonder what next year would hold. 

I hope you all had a wonderful Thanksgiving, and I hope you are all truly grateful for the blessings in your lives.