As always, nothing about my life has been typical or uneventful. My doctor appointment on Friday left her feeling nothing short of baffled and confused. With the knowledge that I do not yet have insurance until September 1st, she only ran the most immediately necessary tests. So a bunch of labs and chest X-rays later…apparently […]
It’s always something Read More »
Fear looks and feels a lot different for everyone. Sometimes it’s manageable, sometimes it overtakes you and paralyzes you, it doesn’t always make sense, or it’s there to keep you safe. For me, I live in fear for my kids and their health. Since me and my 3 boys share a rather devastating and largely
Fighting through the fears Read More »
Well, here we are. The first day of school. My 7 year old is off to 2nd grade, and my 5 year old has officially started kindergarten. Phoenix, my 5 year old, woke up this morning screaming throughout the house BEST DAY EVER!!!!! in mantra format, so….I guess you could say he’s excited? He’s, um…well,
Oh, Monday. You already know how I feel about you. This Monday is a little different because it’s the start of the last full week of summer here. School starts up again next Wednesday and we’ll be thrown right back into the school routine. This time with 2 kids, as my 5 year old will
Yesterday was a long, long day. We had our regularly scheduled visit with our favorite doctor. Every few months, we go to see the neuromuscular doctor who has been basically in charge of our care for years now and was the one who initiated sending us to the NIH. These visits are always intense, as
It doesn’t matter why. It just is. Read More »
My littlest of loves just got taken back to the OR. We left the house at 4am to get to the hospital by 6. It’s 7:30 now, and they just took him back. It was a smooth and easy morning. The easy part is the before. The rest of our day isn’t promised to be
Surgery days and helpless hearts Read More »
What do you do? What do you do when it’s 12:01 in the morning. You want to sleep. In fact…you’re desperate for sleep. Yet…there’s something in the way. That nagging…loud and getting louder and louder voice…telling you to stop. To give up. To go away. It’s tomorrow now. Just barely. Maybe we still consider it
My 7 year old son has been in the hospital since Tuesday afternoon dealing with a “severe asthma exacerbation”. (Picture of my actual life below) His lungs got extremely clamped down, and took their sweet time to make even the smallest amount of progress. It’s been exhausting. He very quickly went from room air, to
Hospital stays and exhaustion. Read More »
Yesterday was a day full of positive staff interaction. The day started off with labs, bloodwork for all 5 of us, followed immediately with EKGs for me and the 2 bigger kids. Phoenix and I went into the room at the same time, and the tech did us back to back. Phoenix went first. And
Serving a bigger purpose, and finding the good. Read More »
This entire week has been, if nothing else, a truly unforgettable week. For about a hundred different reasons. While I’m not yet ready to recap it completely, today is our last full day here. It consists of a good bit more testing, labs, EMGSs and EKGs. And who knows what else. Yesterday was hard. Every
Harder than I hoped Read More »
