Busy Summer

Our summer is just sailing along. I remember planning Sofia's surgery at the beginning of summer with the intention that we'd still get to enjoy summer, but due to her slower recovery we missed a lot of it. For me, it feels like June, but I can't believe that next week is August already. Sofia is starting preschool in the fall, and I'm so excited for her to go. I think she is really going to love it. Oliver's new job is going well. I am still working full time and working at the Health Department part time, so we have lots on our plates. Our new babysitter seems to be working out. Things are good!

Sofia's is doing well healthwise. We are now almost 3 months post Fontan! She saw the cardiologist this week and doesn't have to go back for 3 weeks! This is improvement. The only medication she is on now is aspirin (which she'll be on for life) and lasix once/day (which hopefully will be taken off of completely soon). Her pulse ox was up to 92 at this appointment, which is the highest it's been. It should still rise over the next few months. If not we will be looking at a cath in the winter time. Dr. Edwards also mentioned that we might need to stent one of her pulmonary arteries (I think Oliver said left). I will talk to Dr. Edwards more about this at her next appointment, because that hasn't been mentioned previously. She will see the pediatric gastro specialist in August to check out her gallstones. I'm really hoping this goes well. Sofia's energy has been great and her coloring looks really good. Her hands and feet are so pink. Dr. Edwards also said this is the best he's seen her look.

Oliver and I got involved with a non-profit called Mended Little Hearts, as a local chapter formed in northeast Ohio in June. It's nice to connect with a lot of heart families. I think it's going to be rewarding to support new heart families because it was something we didn't have when Sofia was born. I always thought we had a rare experience in that we didn't know about Sofia's heart until after she was born, but I have learned over the past few years that is not that uncommon. Lots of families find themselves unexpectedly in the hospital and one of the things we're going to do is make care bags of essential items that can be given to families. I really think it's going to be a great group. We are trying to get some fundraising efforts going, so we're selling these heart necklaces for $20 including shipping. If anyone is interested in one, let me know! I have one and I wear it all the time. It's a 1 inch pendant on a 26 inch chain. ahcurwen@gmail.com and I will ship to you

This quote was hanging up in our office and I had to take a picture of it. It's a good one.



Here's to enjoying the rest of summer!

Heating Up

Sofia had another good cardiology appointment yesterday! Her labs were all good and x-ray looked good. No effusion. Another medication has been cut. She's down to just aspirin, lasix ibuprofen, and potassium once/day. WOO HOO! I could get used to these good check ups.

We had a nice 4th of July. We got together at Emily's house and I am often reminded how nice it is to have most of our family close by. I can't believe how hot and humid it has been the past few days. We really didn't spend too much time outside. Sofia is allowed to ride her bike and resume normal activities, so I can't wait until it's tolerable to go out and do these things.

Love these pictures from the 4th of July.

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