Sometimes I log on to here in the evening and I’m wordless. It’s times like these when you might not hear from me for a day or two or even three. My silence often means there is no new news, or we’re worn out from having fun, but other times it means I’m simply numb, worn out, emotionally blank. This is the part of the marathon where my “muscles” are growing tired and the finish line seems a million miles away and throwing in the towel sounds really good. But this isn’t an optional race, there is no choice but to keep putting one foot in front of the other.
Right now, one foot in front of the other means navigating Phoebe’s mood swings from the steroids, fetching applesauce or macaroni and cheese at 3 am because of her hunger from the hydrocortisone, taking unexpected trips to the hospital because her ng tube got pulled out or spending several hours in the ER just to be sure her excessive sleepiness isn’t a bout of wacky electrolytes. It’s exhausting. Having Phoebe home is a thousand times better than having her at the hospital, but it is demanding. And it is at the end of these days that I come to write and find that I have nothing left.
All that aside, Phoebe is doing great. We have been out several places with her since her counts have been coming back. She was a big hit at the grocery store and several people stopped to talk with her which she loved. Tonight we went out to eat and she pulled out her ng tube just as we arrived at the restaurant so she got to be “untethered” for a while which is always nice. As we drove home, I looked back at her reflection in the rearview mirror without a tube on her face, completely free from any type of medical device and was overcome with gratitude. Just 2 months ago she was completely swollen, blistered and intubated in the ICU with several different IV lines in her body fighting septic shock and tonight she was riding down the road in her carseat with nary a tube. God has taken such good care of her.
I see her making improvements in her strength every few days. It is slow going, but today when we put her on her tummy she held herself up on her arms for longer than she ever has, and she held herself in a crawl position without freaking out like she tends to. She is also starting to scoot herself across the bed when she wants something that is out of reach which is new.
Phoebe has not lost any ability, walking or otherwise, that she can not completely recover. Sometimes people ask if she will ever walk again and I forget that I might not have communicated that. Yes, Phoebe will be able to walk again with agressive physical therapy and we are setting up in-home therapy for her during the times she is home. I am also told that she will see an ‘Orthotist’ (sp?) who will take a mold of her legs to create cast-like braces for her to wear in order to correct her foot-drop and get her muscles stretched out correctly. She has a lot of work ahead of her, but her spirit is so strong and her motivation so inspiring!
Thursday is MRI day, and we appreciate your prayers! Here’s Phoebe and her Daddy tonight at bedtime…..