I’m promising to update more frequently. We have a LOT going on and I want to document it all for when I ever get a chance to scrapbook
June was a busy month.
Maddie graduated from St. Dominic School on June 15th. It was a beautiful day and I’ll admit to having shed a few (thousand) tears.
June 17 was a VERY big evening for Olivia. We were invited to the Aqua Turf to share Olivia’s story at the Miss CT Gala. This is the kickoff to the Miss CT pageant. Maddie had her annual end of school party at Mountain Grove which she chose to attend instead. Olivia was in her GLORY with all the pretty ladies, their gorgeous dresses and of course, all those CROWNS! Olivia made us incredibly proud when she chose to give a speech herself. There was not a dry eye in the room when she was finished and she received a standing ovation. The directors of the pageant were so impressed they actually made Olivia an honorary “diamond” and gave her a crown. It was truly a shining moment for Olivia and “the hands” were going a mile a minute. She asked me after getting her crown if she would get a sash too? LOL. She then spent the rest of the evening dancing with the other girls. She made fast friends with a little girl who had the same dress on as her.
This was such good timing, as the next morning I woke up Maddie and took her to Disney as her graduation present! It was just the two of us. We went from June 18 – June 22 and stayed at the Port Orleans – French Quarter. How I told her: I had been telling her we were going to start getting up early in the morning and running. We had also been telling her that her graduation gift wouldn’t be arriving until Saturday. On that morning I woke her up at 5AM and asked her to come downstairs. We handed her a graduation card that told her to look in the trunk of my car for her gift. She opened the trunk where two suitcases were in there (with the bright yellow Magical Express luggage tags on them), along with her Mickey ears and a small Mickey Mouse. She couldn’t believe it and kept saying “Really? Now?”
Maddie actually planned the entire trip – from dining to park days for my “client”. We did a lot of “new to us” things – such as water parks (which she had last been to at the age of 3), Disney Quest and closing the Magic Kingdom at 2AM. It was a great time for just the two of us to spend time together and bond.
June 25 I took the girls and Maddie’s best friend to the Miss CT pageant in New London. The Miss CT organization had invited us to attend after Olivia’s speech. Olivia got to see some of the new friends again and we got to see Miss Southington, Morgan Amarone, become Miss CT. Olivia went on stage with our friend, Scott, from the CT Children’s Medical Center Foundation to help him present the outgoing Miss CT, Brittany Decker, with a thank you for all that she did for the Hospital in the past year.
So it’s been a while, a VERY LONG while. Life gets in the way and I can promise you when you don’t hear from us, it’s because there’s nothing but NORMALCY to report.
I’m not sure what happened to most of the links on this site, I will take a look when I have time (ha) to figure it out.
I’ve been reminded by my husband, my family, my CHILDREN (who are now old enough to read this blog and POST comments on it!). So here’s the very long, very overdue update.
Olivia was released on Monday afternoon.
Tuesday we saw Dr. Friedman for a followup. Olivia lost 5 oz since her 9 month checkup. The previous weight was incorrect. Dr. Friedman believes that Olivia has a “sore throat virus” along with a tummy bug. She gave us the green light to travel though.
Olivia is feeling better but is still not 100% herself. She is clingy and scared of strangers. She seems to be throwing up once every other day. We’re hoping she’ll start feeling more like herself soon as it’s been almost a week that she’s been sick.
Next update will be after 5/20/05 since we’re headed to the Happiest Celebration On Earth! ÂºoÂº
Olivia had her followup appointment with Dr. Heller today.Â It went EXTREMELY well, as always!
Olivia is still weighing in at 14 lbs, 13 oz.Â They measured her but I didn’t get that written down.Â Her EKG looked great.
We met first with an adult cardiologist who was visiting the practice. He’s starting to get some single ventricle patients so he was visiting to learn the anatomy, etc.Â It made us happy to know that the single ventricles are growing to the point that they have to leave the pediatric groups!
Olivia’s oxygen level was 90%! She’s now big enough to wear the finger monitor versus the infant toe monitor which drives Olivia crazy!
They also did an ultrasound and Olivia’s valve looks amazingly great. She used to have “some” leakage (back flow) and now it’s “miniscule”.Â So Olivia no longer needs to take her captopril medication!Â So we’re down to Amoxicillan and aspirin for medications.
Dr. Heller called Olivia her star patient (again) and called her the poster child!
We asked about Olivia’s bump on her chest. Where the chest bone comes together she has a bump which apparently is very common in heart kids and actually Olivia’s is not as pronounced as others.
We also asked about taking Olivia on vacation. Arnie and I are aching (ok, *I am*) to take Olivia and Maddie to Disney World. For me, what kept me going throughout the surgeries and hospital stays was the thought that one day Olivia would be healthy enough to go to Disney World and meet Mickey Mouse.Â Well, Dr. Heller said “GO FOR IT!” and the only restriction is that Olivia cannot ride Splash Mountain. *LOL*
So we’re going to Disney World in May!!!
Our next appointment is not until June 2 at 9AM.
My girlfriend Lori from my mother’s group is in Walt Disney World this week with her family. Last night they were at Magic Kingdom watching the fireworks show which is titled “Wishes”. She sent this to me this morning:
Tricia, every now and then my husband does something that melts my heart. Tonight was one of those times. When we were walking out of the Magic Kingdom he asked “your friend who is pregnant with the baby who will need heart surgery, she’s one of the Disney gals, right?” I said, yeah, that’s Tricia, why? He asked what’s her name (meaning baby)? I told him Olivia and he said “well, you can tell her my wish (as in Wishes, the show) is that sometime next year that they can bring a healthy, happy Olivia here to see the show for herself.
It’s our wish too. Ours too.