Our best heart buddy Lily is going in for the Fontan today in Boston. Her website is http://www.caringbridge.org/visit/lilyfetridge
Please pray for Lily, for the surgeons, for her parents and her sisters. I’m heading up there tomorrow after work to spend Wednesday with them.
The Belfonti’s are doing well and I’ll post an all around update soon.
Olivia went to see the cardiologist on December 1. We went to the Glastonbury office which was nice.
She weighed in at 36lbs, 4 oz. Her height is 41″ (lying down which I’m not sure about).
Her blood pressure is 93/62. Heart rate was 134 and her oxygen saturations: 89-94%
Her echo and EKG showed everything is the same as last appointment so there was no improvement or worsening of her regurgitation. (picture me cheering!)
We’re increasing her enalapril to 3.5ml 2x a day due to her growth.
And now … we don’t go back for 6 months!
One step closer to an annual checkup.
I’m going to add pictures NOW from the past few months
Remember, no news is good news – and I’m just keeping you all updated on all the good news you missed
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.
Overall it was a great appt.
She weighed 34 3/4lbs and was 39 3/4″ tall (weight gain of 4 1/4 lbs and grew 2″ since February) cheering.gif She is staying on her growth chart of just shy of 50%.
The eye exam didn’t go well at ALL – she claimed she couldn’t see when we covered one eye up. More info on that in a minute.
BP was 88/? – the lower # isn’t as important as the high # which was perfect.
She and I both got our flu shots. Arnie and Maddie will go next week to get theirs.
We discussed the antibiotics – do we need to increase the dose? She said yes and then said “have you tried chewable antibiotics with her?” I was thrilled to be handed an rx for those! We’ll fill that via mail order – so no more every other week trips to the pharmacy!
She’ll need an updated pneumovax vaccine at 7 yrs old.
Next year she’ll need the following shots: MMR / Chicken Pox booster and then the DTAP and Polio (which are one shot now).
Now about the eye exam: we are going to make an appt with a pedi eye dr. She could have some sort of thing going on where she can’t see well out of one eye – the fix for that is a patch and / or drops to blur the “good” eye and make the bad eye stronger. She commented “thankfully we found this now and not before” – I am not nervous about it at all – at least there’s no surgery needed, right?
We have an appt on Tuesday morning at 8:20am. I’ll post an update after.
Someone hold me!
I know I’ve been a bad blogger. We just got back from Disney. Vacation was WET but wonderful. More on that once I catch up on sleep and life in general. Plus pictures – trust me, I took PICTURES. We have almost 1000 from our camera. And almost 300 photopass pics that Disney took.
This little girl is now a preschooler. Where has the time gone?
She grew from this:
I’m participating in 102.9 DRC-FM Miracle Makers. This fundraising event benefits Connecticut children’s Medical Center (CCMC), the region’s only academic medical center devoted exclusively to children.
Without CCMC Olivia wouldn’t be here today. She wouldn’t be bouncing around my living room pretending to play guitar and jumping every time the thunder cracks.
My good friend Laura and I have created a team called “Heller’s Heart Beats” after our favorite cardiologist, Dr. Heller. Without Dr. Heller we wouldn’t have met. Dr. Heller is an amazing doctor who truly takes care of ALL of us and not just Olivia. Our lives are truly better for having her in them.
Connecticut Children’s is committed to providing the highest level of care to the most children possible. This is accomplished through a unique family-centered approach that plays an integral role in the planning and delivery of treatment. In an effort to make kids better, faster, independent research is conducted and the latest technologies and procedures are utilized. Fun and play are used as therapeutic tools to help reduce fear, build trust and speed recovery.
You can help support me by making a secure online donation using your credit card. Click on the link below:
For more information on how YOU can participate in 102.9 DRC-FM Miracle
Makers, please visit us at
Don’t forget to tune in to 102.9 DRC-FM’s sixth annual Children’s Miracle Network Radiothon benefiting Connecticut Children’s Medical Center, August 28th – 30th.
I hope you will support my efforts so that together we can make a difference in the lives of the children and families just like Olivia, Lily and our family.
She is LOVING summer. She started summer camp a few weeks ago and it definitely agrees with her. I think she’d go all year long if they offered it! This first session was “Jungle Boy” and she came home at night telling us all about the happenings of the day with Jungle Boy. This session is Olympics Gladiator Style. She LOVES playing Gladiator dodge ball which is your standard dodge ball but in a gladiator ring.
She will attend three and a half sessions (7 weeks). Before and after camp she goes to our neighbor’s house. She loves their daughters and has a great time. Camp wears her out though. Maddie never
stops, so for her to be lounging on the couch after camp – you know she’s tired!
She’s been spending a lot of time with Arnie lately. She’s his shadow. If he’s off doing something, she’s usually right there with him. Be it weeding or painting or watching the game, they’re together. It’s really cute! She’s also growing up so fast and is maturing overnight. Nana (Arnie’s mom) said something to her a few weeks ago that really clicked with her. Nana told her that Nana’s older sister always got good attention when she was extra nice to her little brother and sister. Since then Maddie has been helpful with Olivia and not picking on her as much. It’s been a wonderful change :).
She spent some of her communion money on a new bike and is really enjoying it. She and Arnie took a ride on the bike trail last week and Arnie said she was FLYING. Even went so far as to cross the main streets by herself (after looking both ways, etc). They biked about 5 miles that night.
It’s hard to believe she’s going to be 8. She is a joy and full of love and energy and we love her so much!
Olivia is going to be featured on fliers that will be hung up at Miracle Treat Day participating Dairy Queen stores here in CT.
The back story is behind the cut along with an attachment of the flyer.