Tough Like Tessa

08 November

I just shared these pictures of Tessa, along with a brief update, on the closed CLOVES Syndrome Community Facebook page in the hopes of helping/encouraging other moms or individuals with CLOVES. I thought I'd share them on here as well. 

This picture is from a little over a year ago. Her poor skin used to be stretched so thin over her malformation that any tiny scratch would cause her to bleed or leak lymph fluid.  I would constantly rub an ointment on it (this is what I used, in case anyone is wondering) to try and keep it moisturized.  It constantly itched her and made it difficult for her to sit up straight or move easily. Pants didn't fit her, so I had to buy all new one piece outfits for her.  

And now, after a few rounds of sclerotherapy, a small dose of medication daily, and her special formula (Peptamen Jr...which allowed her body to finally absorb nutrients and the extra lymphatic fluid that was collecting in her abdomen) her right side looks like this: 

Isn't that amazing?! 
That area is now soft to touch and her skin looks fantastic. 
She still has the malformations in her groin that haven't gone down in size (and are actually a little bigger now that she is standing upright and walking) but they haven't caused her any issues lately, so we won't do anything about them right now. 

Last year was full of many hard and uncertain days as we battled with constant unexplained fevers, chronic anemia, infections, and malabsorption. But since she started drinking Peptamen Jr., those issues have been resolved and we give thanks to God every day for that.  

It's never easy to go through difficult circumstances, but what those circumstances do is teach you to be thankful for the simplest, yet most important, things in life. 
So today I am thankful for a healthy family, and the fact that we are all home together.