11/5/18 Day +187 TMA Stable

“You blink and they are 8. Then 28. And then they are parents, resembling a you you once were. So take it in, mama. Let them climb into bed with you any hour of the night. Sing that song they requested for the tenth time. Hold them a little tighter when all they want is hug on you – feel that small body against your own. Maybe in raising children you lose your mind a little bit. But, boy, do you find your soul! Embrace the exhaustion. The overwhelming. The hard days. And all the joy.”

Tonight I asked Chris a question about home. I asked him about the “hardest” part of our day. Bedtime. Having three little children to put down is no easy task, as any parent of tiny children understands. At the end of a long day, when silence (and maybe a favorite show on DVR) is just moments away, THE bedtime routine can be overwhelming. I asked him if he would staff it out, if he could. Skip that part, the madness of bedtime. His answer was the same as mine, no way. Some of the most rewarding moments go hand in hand with the most difficult, isn’t that true? Without those ups and downs it would be so… even. And even is not the stuff memories are made of.

I’m sure you have noticed in recent pictures that Reese is very swollen. This is a combination of two things. High-dose steroids for months combined with TMA. She is retaining a lot of fluid, many pounds. Once her steroids are gone (we wean to 0.55 on Thursday) and once her TMA is resolved, we anticipate little Reese will be back to normal, little Reese again. In the meantime, she is beautiful, and she has Ladybug Girl.
Reese- Mommy, do you think she is pretty?
Me- Yes, why?
Reese- She looks like me.
See pic.

So, the big news. Reese’s TMA seems to be STABLE. Yes, we are celebrating!! Her Monday labs are showing that this beast is under control! Not necessarily better, yet, but under control. This is HUGE! Reese’s LDH, d-dimers, and hemoglobin did what we wanted, a good “trend”. Her BP is much better. This is amazing and we are praying for more of this in the week to come. It’s the best we could ask for, we are very thankful.

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