Ramona Mae

We had a very interesting appointment with the cath lab surgeon today. I really like him, he’s always very direct but answers questions thoughtfully and compassionately. He seems to understand how important everything he says is to us. Every doctor we’ve spoken with has their own take on Ramona’s treatment plan and prognosis and Dr. Wax is no exception. He shared two thoughts with me today that were rather a surprise…

(more…)

I’ve been having trouble falling asleep. Getting surprised by a pit in my stomach when think about Ramona’s upcoming surgery. A heart cath is really not a huge deal when compared to open heart surgery. But it’s a big deal compared to staying home and going on with life as usual.

(more…)

The thing I remember best about our first days with Simon is the way his birth seemed to coincide with the arrival of spring. It seemed to me that the whole earth was celebrating his arrival by blooming and warming and coming alive. Here is a story I wrote to celebrate the special way he came into our family. It’s in honor of his second birthday, which is tomorrow.

(more…)

I am glad to report that Ramona is sick. Sounds crazy I know, but I was so relieved tonight when Ramona spiked a fever, that means her low sats and funky coloring are most likely due to a cold or something and may not be related to her cardiac status. So although having a sick baby stinks and we’re probably all about to get sick, I’m super-relieved.

(more…)

Hi all. We’ve had a nice and very busy weekend. We didn’t make it up to Milwaukee for a meeting of families affected by 22q11, as I had hoped to, but we did get out there and enjoy the nice weather. I even got a little sunburned.

(more…)

Just a quick note to say that Ramona had a hearing test today. Although they were unable to get her to cooperate for the whole test, what they did complete was normal.

(more…)

No, funktacular is not a new medical term. It’s the mind-addling, inescapable smell wafting through our whole house, courtesy of Simon. And no, it’s not poo-poo.

(more…)

As Ramona’s next surgery approaches I’ve been looking back. And despite all of my anxiety and worry about her cath, I am feeling very encouraged about how things are going now. Here’s my list of the top ten ways our life is easier, happier and more relaxed than it was at this time last year…

(more…)

We had a great visit with Papa Wayne and Grammy Sue. They stopped for a few nights en route to pick up their new puppy. We all enjoyed their visit, but Simon especially took a liking to “Big Papa”.

(more…)

We had a nice Easter with friends and family. Simon and Ramona enjoyed an indoor egg hunt (we had a snow storm on Good Friday) and opened their easter baskets.

(more…)