In PICU: Gwendolyn Had a Blood Transfusion

Well, crud. We are in the PICU again. Little Miss Gwendolyn had to have a blood transfusion. I know — What the heck! Over the last week Gwendolyn has been really pale and so her doctors wanted to check her red blood count. Well, yesterday her hemoglobin came back a 5. Now all of this […]

Feeling Pretty Good.

Yes, we are feeling pretty good right now and it is all because Gwendolyn seems to be doing a little bit better. Baby steps, but we will take those! Gwendolyn had an okay Saturday, a great Sunday, and an okay Monday. I’m not saying we are in the clear now or that all is fine, […]

This Moment.

When Gwendolyn was first diagnosed, within two weeks we were hit like a ton of bricks with the reality of SMA —  a consultation trip turned into a month-long hospital stay at Stanford, new routines, new machines, a surgery, so much uncertainty, a failed ambulance ride home nightmare, a collapsed lung followed by another hospital […]

Gwendolyn Update and a Special Visitor

Thank you all so much for your thoughtfulness and concern for Gwendolyn this week. Gwendolyn is status quo and we are still very worried…but very hopeful. We are seeing improvements in some areas, but are still waiting in others. There is still uncertainty about what exactly is going on, but Gwendolyn tested positive for pseudomonas […]

A rough week, but grateful

Gwendolyn has had another rough week. And this weekend was down right lousy. The good news is that from a respiratory standpoint she is healthy — that is very, very good news for SMA. The bad news is this darn infection (or the problem we can’t seem to figure out) just won’t go away. It […]

Good Things For Gwendolyn: A Wizard Promise Fullfilled

Gwendolyn is still having a tough time. She hasn’t bounced back the way she usually does after antibiotics and we are feeling a bit on edge (well, we are always on edge, but more so). We are having more tests done to try to get to the bottom of it all, but she just isn’t […]

Viva Las Vegas

Before unexpectedly driving 5 hours north to Stanford, we had a fabulous planned long weekend 5 hours east of Santa Barbara visiting some great friends in Las Vegas, Nevada. Viva Las Vegas! Whoa, the G-Van is really racking up the miles these days… Gwendolyn is actually a Vegas veteran. Yep, at not-yet-four-years-old this is her […]

We Are Home and There Is No Place Like It!

We are home! We are home! And everyone is doing fine. Gwendolyn is such a trooper, but she definitely had enough of being poked and prodded and beamed from ear to ear as we marched out those hospital doors — in a Dorothy dress no less and with new toys and balloons. (Thank you Lunt […]

Gwendolyn stable, but in PICU

Oh Gwendolyn. She likes to keep us on our toes. We are at Stanford right now in the PICU. It’s a bit of a long story and the truth is we don’t really know all the chapters yet. She is stable and happily watching lots of movies, but something isn’t quite right. For the last […]

Acts of Kindness: A Wizard of Oz Surprise in Memory of Chloe

Last Friday Gwendolyn received a surprise package in the mail. I already told you about the special Wizard of Oz tea set and boy does she love this. But the gifts also included a set of Wizard of Oz dolls and a Wizard of Oz sticker book. Now to say this was a hit is […]