How Do You Do It?

"I don't know how you do it" is a statement I, along with other special needs moms hear pretty often. Some find it offensive and I can see why. It implies we put up with things that we shouldn't have to and that is partially true. We shouldn't have to spend nights in the hospital or watch other kids grow and surpass our own. But I am not offended because those that utter the phrase have positive intent. What I choose to glean from the statement is this:

• I am an amazing mother who goes above and beyond for my child because I have to, and because I want to
• I go through more than most mothers but still come out smiling even if life sucks at the moment
• I show up to work and continue to be productive after sleeping on a hospital couch or better yet, NOT sleeping at all when a normal person drags in a bad mood
• I drop everything to do what's best for my kid and others notice and appreciate this
• I have more stamina now to keep chugging along than I had when I was 20, younger, more metabolism, etc. 

I recently told someone I get by on snickers bars and caffeine. That's "how I do it". We all do what it takes to make sure our children get what they need. Now "How do you do it" differs completely from "I could never do what you do". Now THAT is offensive. Because I think anyone could do it. You do what you have to. A tiny human being who needs more than a normal tiny human being has a way of wrapping you around their adorable little fingers and you're stuck for life. Walk across a floor of tacs? Jump through a hoop of fire? Go on two hours of sleep in three days? Why yes, dear, if that's what you need from me to be happy and as healthy as you can be.

The official diagnosis was a UTI, the same one as the last, it never fully went away with her first doses of antibiotic. Apparently the UTI caused vomiting, then the treatment caused nausea, which caused more vomiting.Wednesday, she had another MRI, which showed her ventricles increased. This implied a shunt malfunction. Her neurosurgeon did a shunt tap which showed there was no way it could be pressure in her head. Then as they were resetting her shunt setting, it was discovered that the magnet tool they use to set the shunt was not working! So for a week, her shunt was set at 1, instead of 0.5. It explained the increase in her ventricles and quickly resolved itself once the setting was corrected.

As far as us, we are home for now, and how we do it has gotten easier than the last two weeks! We had the pleasure of sleeping in our own bed last night and hanging out in our lazy day clothes today. Miss Callista was so happy to be home and to sit in her pink chair.  She hasn't had a single breath holding spell since she left the hospital which contributes to my theory that she simply hates it there. We all slept in today, making up for sleepless nights away from home. They gave us a new bag to hang with her feeding to help her get the air out of her tummy. Hopefully we are in for a much more pleasant eating experience. Right now, she is still on slow, continuous feeds and gradually we will work our way back into a normal schedule. She has a nutrition clinic appointment next week to see about what we can do to meet her needs but avoid milk and soy. Other than that, we're just looking forward to our three whole days together.

Also, welcome to all our new readers from Callista's facebook page. We are so happy to have you on our team!