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Another six weeks have flown by. I can't even believe how fasts every moment slips by. I feel like the kids just got back from summer camp. How can Christmas break be upon us?

I guess we did have Halloween and Thanksgiving and lots of fun in between.

Cinderella

Cinderella in her coach, with her coachman.

Yes; her coach lit up.

Community theater!

Daddy Daughter Date!

Daddy Daughter movie date with the Girl Scouts.

Izzy's new heart.

Izzy made herself a princess.

Picnic outside without coats the week of Thanksgiving!

Thanksgiving.

And December did come! Not sure how that happened.  We have managed to find a place where Izzy is making it school most of the time. It's not easy on her, but she loves school. Her meds are at a good point and we've found a way to reach her emotionally. It's not easy by any definition, but it's better.

Posing with the Hermione Granger wand.

We have not found the answer for Izzy's ear yet. The infection remains. Her ear drum exploded again two weeks ago today. The ear was cultured and she was started on a 5th round of antibiotics. Culture came back last week and it was positive for aspergillus niger fungus. We don't know what the doctors plan to do for this. We are still in wait and see mode. The immunologist was talking to the ENT and then they were deciding on next steps. It is frustrating. Izzy is scheduled to see the ENT again on Friday. She sees him regularly now every two weeks.

Besides the ear pain and decreased ability to hear, I am very concerned about this infection spreading because it is not going away. I just want it to go away.

We had a wonderful snow storm yesterday. Izzy loved watching the snow.

This morning, Izzy saw her cardiologist, Dr. Cutler. I don't know what I expected. I know nothing good can come of these appointments, but I always hope for something positive. I don't know why I do that to myself, but I do it every time. I hope that all of this downward fall is in my head. But it's not.

Izzy's echo looks fairly unchanged, except for a blob near Izzy's VSD patch, right near her tricuspid valve. Dr. Cutler has not seen that before and is not sure what it is at this point. Unfortunately, with the fungal ear infection Izzy has had since the end of the summer, there is a concern that the blob is potentially the same infection. Now, Dr. Cutler is talking with the immunologist and ENT and Izzy will be getting blood work. 

Izzy's rhythm issues continue as well. Dr. Cutler thinks that nutrition plays a role. Unfortunately, we can't get Izzy to eat regularly. Izzy wants to eat. She loves to eat. But she can't. We don't need suggestions on new foods to try. Yes; we've tried shakes and smoothies. Again, Izzy loves food and loves to eat. It's all she thinks about, but she can't. Anywho, her heart rhythm is not good no matter the culprit, so that earns Izzy a 24 hour holter monitor. She will get that on over Christmas break.

Due to Izzy's decreased endurance and activity levels, we are also weaning her enalapril (blood pressure med). The hope is that it will increase blood pressure to her gut and maybe assist in lessening Izzy's belly pain. Apparently, enalapril aids the left ventricle function. Izzy's left ventricle is damaged due to the right ventricle damage, so the enalapril can't really help. Anyway, the hope is that as we wean, Izzy remains stable and we can get rid of the med. Hopefully, Izzy's potassium remains stable as well. (Enalapril helps maintain potassium that is lost from lasix, so we'll have to get Izzy to eat foods with potassium, like avocados, yogurt, broccoli, brussel sprouts, bananas, and potatoes.)

So that is where we are. More questions asked. Not a lot of answers.

After the cardiologist though, we played in the snow!

Thanks for checking on our girl.

Mel