Good Week

I should be in bed right now, as it's midnight and Oliver will be gone all day tomorrow in Columbus for work, but I feel a little wired.

I'm glad to report that I think Sofia has turned a corner in her recovery. This has been a good week. All of her blood work from Monday was normal. She had another appointment with Dr. Edwards on Thursday, which we all went to, and I felt like I was back in the loop. The reason for the referral to the liver specialist is because she's a gastroenterologist and will evaluate Sofia's gallbladder. I was all stressed thinking something was going on with her liver, but that appears to be fine. In addition to have good labs, she had a good appetite today. She also is now taking potassium (unbeknowst to her) in her orange juice. I have to mix it with a lot of o.j. to hide the taste, but eventually she drinks it all. Her energy is good and I found that this week I haven't been watching her quite so closely to make sure she's feeling well.

In other news, I went to the first meeting of the Mended Little Hearts last night. Actually, Oliver and I went together and my mom babysat the girls. It was in Independence, which is a good 45 minute drive, but it was worth it. It was nice to see some familiar faces and some new ones that I have only seen on facebook! I really think that a support group for families of CHD is something that is needed in this area and I think this group could really do some great things. One of the projects discussed was putting together care packages for families at the hospitals and visiting these families. Doctors can refer families to MLH when giving a CHD diagnosis for emotional support, which is something I think many could benefit from when facing the ups and downs of having a chronic condition. I'm not sure I would have been able to get involved with a group like this when Sofia was born because it was such a shock and everything was pretty raw, but I feel like I'm in a good place now and CHD is a part of our lives. Anyway, I'm going to be the treasurer and I'm excited to be a part of this new group. There were about 15 families there, and I thought it was really nice that Dr. Edwards was there and one of the nurse practitioners from the Clinic. It was great to see the health professionals getting involved with something like this too. Dr. Edwards talked about lobbying in D.C. for pulse ox testing in all newborns, which is something that would have detected Sofia's cyanotic heart condition sooner. The Clinic is now doing this on all newborns. I'm not sure about other local hospitals, but I know Lake West, where Sofia and Adelaide were born, was not doing it when I had Adelaide in late 2010.

We registered Sofia for preschool for the fall and I'm so excited for her to go. I really think she is going to love it.

Adelaide is doing well too. She is at a very cute age and you can just see her learning. She repeats almost anything you ask her to say (our favorites are how she says vegetables, watermelon, and love you amongst many others).

I heard that a little boy about Sofia's age named Charlie got his new heart at the Clinic today. I first learned about him about him when Sofia had just had her surgery, and a former classmate of mine who taught his brother posted on facebook about him and I kind of kept my eye out for him while we were there. He has been in the hospital a long time and we caught glimpses of him while we were there for our stay. Please keep him in your thoughts that his new heart is strong and works for a long, long time!