Hello strangers!

I apologize for not keeping this up. Life gets in the way and I promise, no news is ALWAYS good news with our family.

Olivia

is doing GREAT. She is halfway through Kindergarten wow, when did THAT happen. She loves school, loves her friends and loves her teacher. She’s reading Dick and Jane books and can recognize many sight words. Her biggest “issue” at school is chatting – she seems to be quite the social butterfly. No matter who they put her near, she’ll talk to that person! She’s a love bug.

Starting October 9, we had an “incident” with severe joint pain. Olivia came home from school on that Friday saying her shoulder hurt. It hurt her so bad that she didn’t want me to pick her up. The next day the same shoulder hurt and she was definitely avoiding using it. By Saturday night the shoulder was fine but she was complaining about her foot hurting her. She was in so much pain that we had to carry her up the stairs. The rest of the weekend was uneventful.

Tuesday, Oct 13 she and Maddie received their flu and swine vaccines. We mentioned the joint pain and Dr. Friedman said to keep an eye on it. She would run some bloodwork if the pain came back.

Sure enough the next morning she woke up SCREAMING in pain (her knee). She couldn’t put ANY weight on that leg so Arnie brought her for bloodwork. They tested her for rheumatoid arthritis, lymes disease and leukemia. We gave her motrin for the pain. All tests came back normal. The pain would travel from shoulder, to opposite knee to her hand. It reminded us of the time she had the leg pain when they thought she broke her leg. Very weird.

We saw a rheumatologist a week later but he couldn’t find anything other than a slight swelling in her knee. He wants us to call if the pain comes back so he can see her in the throes of it. The one thing he did notice is Olivia is severely double jointed in her hips – her feet can almost go completely backwards (cool and gross at the same time).

We missed Halloween due to her mama being a germ a phobe. Many kids in our neighborhood were sick with Swine right around Halloween and we had only gotten one dose of the vaccine. Rather than take a chance, we had a Halloween party with just the 4 of us. We had appetizers for dinner, ate candy and played The Game of Life.

Olivia ended up on Tami-Flu the week after because Maddie came down with a VERY mild case of Swine. Thankfully she waited until AFTER my parent’s surprise 40th anniversary party to get sick.

November was uneventful – just the way we like it!

December was our 6 month visit with Dr. Heller. Olivia is doing well overall. Her valve DOES continue to leak and it is possible that she’ll need some work done on it “prior to her reaching adulthood”. So the “we’re done” part? Not so much. We go back to see Dr. Heller in September, 2010.

January brought with it the return of the joint pain. It was definitely a milder outbreak than in the past and it took us a few days to recognize it was there. We went back to see the rheumatologist who ran MORE bloodwork. Everything came back normal and so we wait and see… I did get in touch with a few moms who have children with heart issues who are ALSO experiencing “joint pain” or “bone pain” – two of whom are here in CT and also go to CT Children’s Medical Center. I have contacted Dr. Heller to see if the cardiologists can sit down and see if they can figure something out because it’s not just her.

In January we also had the opportunity to attend the first annual Miracle Walk which was a fashion show to raise money for CT Children’s in conjunction with Huskython. Huskython is a 18 hour danceathon held by UCONN students for the benefit of CT Children’s Medical Center. The fashion show was a GREAT time. We got to go on stage and share Olivia’s story. It got the girls excited for Huskython which is coming up this weekend. There are going to be a few surprises there for Maddie and she’s going to FLIP when she finds out! This year Maddie is bringing along her best friend which will make the weekend all that more special for her.

Speaking of Maddie: she is doing well overall in school. We’ve had some struggles with focus but overall she’s doing well. She just finished her basketball season. It was a lot tougher season for them as they’re now playing with 4th AND 5th graders. My friend Joanne took some pictures of a game and you can view them . They had the opportunity to scrimmage during the halftime of a University of Hartford women’s basketball game. Someone took which also came out amazing.

The girls are participating in bowling club with school. Olivia is continuing to take swim lessons – her confidence in the water is AMAZING. Maddie wants to play softball so she’s signed up for that as well as a basketball program at the YMCA for 8 weeks.

We also have a big event coming up in May – so if you’re in CT you may be interested.

May 8 we are participating in the Walk For Wishes event to benefit the Make A Wish organization. are the details. You can also sponsor our team by searching for my name.

That’s all for now – I’ll try and update more often going forward. But always remember, no news is GREAT news!

One thought on “Hello strangers!

  1. Hi Tricia,

    I know you will probably not read this post for a long time as your too busy living:-) which is music to my ears. I just wanted to say a big thank you for your detailed blog about Olivia Ann. I am due a little girl in Jan with single ventricle, common atrium, single av valve left atrial isomerism – Heterotaxy, stomach on right and mid line liver. I just wanted to say your blog has given me an insight into what I can except that the doctors and nurse didnt. It also has given me hope that the future may not be so bad:-) I hope your two little beautiful girls have a wonderful Christmas and healthy New Year with you and your family.

    Lots of love
    Irene from Ireland – irene@greenhorizons.ie

Leave a Reply