Super Miss G Is Home Rocking New Super Powers

Super Miss G is doing great. Really great. As in almost fully back to normal. The blood transfusion was a success and we were sent home after just one day with Gwendolyn’s lips more ruby than we have seen in weeks. I’m so sorry we are just posting now. I know that worries people. To […]

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 […]

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 […]

Date Night, Daddy Shopping, Mommy Makeup, and an Ouchie

Well, it has been a really great week filled with lots of fun, but poor Gwendolyn now has a few ouchies that are no fun at all. — Date Night –> We did it. We had an actual real adult date night — just the two of us, at night, at a non-child venue. Just […]

Gwendolyn In Hospital But On The Mend

UPDATE: We are now home and Gwendolyn is doing well. She’s still tired and we are still keeping a close eye on her, but she’s rehydrated and glad to be in her own bed. — Don’t panic, but we’re in the hospital. It looks like Gwendolyn has the stomach flu. We didn’t blog much last […]