Ramona Mae

Oopsie. Has it really been more than a month since I’ve posted? We’ve been having fun mostly. The big news is that Ramona is doing well and GROWING. She has gained three pounds and grown two inches in the two months since her cath. We also baptized both Simon and Ramona last weekend at a beautiful ceremony in my mom’s garden.

“More bike please?” “Bike outside please, Mommy?” “Little bike back please?” All day they are asking me for bikes! They are obsessed. They take turns (sometimes), they push each other on the bikes, they chase and race. They would rather ride bikes than watch TV. So, we’re doing a lot of bike riding, mud puddle exploring and ant spotting. I just wanted to give a few quick updates.

Anyone else out there suffer from blog envy? You know, you log in to your friend/relative’s blog only to discover that they are living a perfect life with perfect thighs and perfect hair and fabulous vacations. And you think, “I need to get it together”. I’ve been thinking lately about what I choose to present on this blog and what tends to get edited out. So in the interest of full disclosure, here are some of our outtakes…

Well, we’ve heard from the surgeons. They’ve agreed, as we expected, that Ramona is not yet ready for her full repair. They feel she is stable for now, and since her arteries do seem to be growing, they have recommended that we wait for six months and then take another look.

Little Kate lost her battle with congenital heart disease at just 18 months old. She was born with the same heart defect as Ramona and also had 22q11. Her family’s story and faith have touched me deeply. They have started a program at their local hospital to provide books to sick children in her name. Please consider donating to Kate’s Kart.

We’re adjusting around here. Adjusting to a new world where positive news about Ramona’s heart is possible. It’s a big adjustment for me, going from cautiously optimistic to less cautiously optimistic. And I find that my usual “eloquence”, also known as long-windedness, about Ramona’s prognosis has just vanished. When asked how I’m feeling about the results of the cath and angioplasty the best I can usually do is say, “Fine, pretty good I guess.” (more…)

We’re home! We are exhausted and more than a little cranky but we’re home. Actually, Ramona seems to be the least cranky of us all. (more…)

Hi all. Sorry for the late update, it’s been quite a busy day. Here’s what’s happening… (more…)

We were just able to see Ramona, shortly after 9:00pm. Our little scrapper kept waking up, she’s developed quite a tolerance for the sedation meds, and trying to pull her breathing tube out. We had a quick visit with her and then headed home to get some sleep. It’s our first night ever with no babies at home!

Ramona is out of surgery and Jane and Andy are awaiting her arrival in the PICU. (more…)