Olivia has a cold. It’s a doozy but it doesn’t keep her down because that’s Olivia for ya. She had started to croup before vacation so we gave her one dose of the steroids and brought with us on vacation. It nipped whatever was brewing in the bud. Then we came back and she was crouping a little bit - but not enough to warrant the steroids so we didn’t give her anymore. Well, the cold came on full blast.

She LOVES school. LOVES.IT! She is loving life and comes home talking about all these different kids (someone new every day). She started swimming class on Wednesday night. You’d have thought it was Christmas Eve. She was so excited asking every 5 minutes if it was time to leave for swimming yet. I didn’t go with her (back to school night at Maddie’s school) - but Arnie said she was practically jumping up and down waiting to go down to the pool. She was the polar opposite of the little girl who was screaming and crying.

Maddie is going to have an EXCELLENT year. She has a new teacher - first year for the teacher so she’s got a lot of new ideas. She’s a DOLL. Funniest thing: Monday M came home and said “I have 6 pages of math tonight (eek) “. We trudged through it and internally I was panicking over how she was going to be able to do extra curricular activities if the workload is that steep every night. They have a daily planner with their homework assignments in it but I didn’t think to check it. We just did the work.

Tuesday she comes home and says “Guess what - we did WAY too much last night for math!” So she was a bit ahead of things for the week wink.gif. We even covered homework for lessons that weren’t given yet. The teacher sent home a note apologizing and I emailed her back. Next time I question the amount of homework she’s been given we’ll re-check the planner which had the right homework assignment written in it.

I know I haven’t posted our Disney pics yet - I promise they’ll be posted this weekend.

I’ve been avoiding this. Not that it’s “bad” but just typing it out makes it more real.

(more…)

Three months ago today Olivia had her fontan. Three months ago…
(more…)

Here are some updated pictures:

May
Special Person’s Day which was dedicated to Father Frascadore
Memorial Day Weekend
Rock Cat’s Game

June
Little Hearts picnic
Our future surgeon

I’m behind in the updates so I apologize for this being all over the place.

(more…)

Here are some pics:
The actual day
Maddie’s communion

“Dress Rehearsal” - making sure everything went together.

Dress Rehearsal

Enjoy…

Greetings from Waltham, MA. I’m here for training this week and of course one of the girls has to be sick when Mama’s away!

The unlucky child this time is Maddie - our child with the immunity of steel. She started a fever on Saturday afternoon right after making her first communion. Sunday it was up to 103. Monday she was ok but not 100% so Arnie took her to see Dr. Friedman at 4:15pm. She was diagnosed with a sinus infection. Today she’s feeling almost 100% but woke up with a slight fever so Arnie stayed home with the girls.

Olivia had her INR level tested on Friday and it came back at 2.1!!! PERFECTION! We have to go back on May 30 for a retest. What a relief!

Prayers are needed for two of our heart friends.

First is our friend Sammy who is having his fontan tomorrow in Boston. Ironically I’m here in the Boston area so I’m going to try and get over to see them either tomorrow or on Thursday. Erika’s been a wonderful source of support for me and I’ll be happy to return the favor.

Second is for our friend who is having some issues with lower than expected O2 levels post Fontan. His doctors have decided he needs to have his fenestration closed. A fenestration is a small hole that was created in his heart during his Fontan surgery. (Note: Olivia doesn’t have a fenestration as Dr. Mello does a different type of surgery than they do up here in Boston). His mom Ruth describes it better than I do.

Here’s a video I took tonight of the girls - Maddie learned the song “the devil in disguise” at school of all places (LOL) and taught it to Olivia. I didn’t even know they knew the song until Olivia started singing it at the hospital today!

Here’s the link to the video - enjoy! (Warning - it’s 3.5mb and may take a good long time to load even for those on broadband):

The Devil In Disguise

Here’s Maddie singing the Merry Old Land Of Oz in her play:
Merry Old Land Of Oz

We haven’t had a day like this in a few years and yet it felt very normal. (more…)

We have a date. March 24. Day after Easter. March 24.

I called Maria today because I hadn’t heard from her and I know she works part time. She answered and we scheduled the surgery.

We go see Dr. Mello (surgeon) on Monday, March 10 at 3pm to see him, get blood work done and a chest x-ray (oh, I’m SO looking forward to that — NOT). We played a game tonight where I put her on the kitchen table and I’d give her a candy every time she’d let go of me. It didn’t go far because she was FREAKING out I’m just praying they’ll do the xray standing up because otherwise I don’t know how we’re going to be able to do it otherwise. Or I’ll have to wait outside the room with Maddie.

Speaking of Maddie, we have an appointment with Child Life for another tour along with a showing of the icu room for Olivia. I explained how Maddie is having a hard time with everything so they’ll help us with that as well. The tour is at 2PM and it’ll be me and the girls as Arnie isn’t able to get to the appt until 3:30pm.

I’m just so worried about my Maddie - she’s going to have such a hard time with it all. Thankfully she’ll be with my mom that day as I know she’ll be able to distract her all day. Maddie doesn’t have school that day and in a way I’m relieved because I know she wouldn’t be focused at school.

March 24. 18 days until we’re on the other side of it all. We’ll finally be past it all and we can move on with our lives. 18 days until we’re past something we waited 4+ years for.