Happy New Year to everyone! Our blog has been broken for a month or 2. I think we finally got it fixed.
Gabi is our little miracle. She is doing really really great. We had a cardiac check up with Dr. Cava in December. They didn’t change much, just a few meds. She is tolerating the change just fine. I really want them to put her back on the higher fat formula because she has lost a total of 6 lbs! She doesn’t have 6 lbs to loose! She is skin and bones. Of course, their solution is to just give more of the Pedialyte Peptide (the lower fat formula) but the problem is, she is already taking in 4.5 cans of this stuff. She literally cannot fit that much liquid in her body. And then of course, the eating becomes the issue. I have called 3 feeding clinics. The first one is Central Dupage. Gabi had an appt with Mary Massery a while back and she recommended this feeding clinic.So, of course, that’s the one I want. BUT they are out of network for our insurance plan. However, I am calling to find out if there are ways around this- if they can simply change the code or something to make it different. It can’t hurt to ask, right?
The second one is at Lutheran General Hospital but the woman who leads the program is on maternity leave until May!
The third option is to go back to CHW and try out their feeding clinic again, which I am not a fan of.
I have called about 5 other private clinics and when I describe Gabi’s eating issues and heart condition, they openly admit that her case is just too severe for them. She needs to be seen in the hospital. It always stings a little to hear that.
She is eating a little but we don’t force her. I don’t tell her she has to eat because I don’t want to make the situation worse. I probably need to push her a bit more, and find the time/energy to really give her time with me to eat, which of course, my mommy guilt is in full gear. Right now, we are just giving her an over abundance of positive feedback when she chooses to eat or drink and when she swallows something, the whole family cheers her on.
Her heart is healing well and her sats are maintaining around 87%. Her endurance is still pretty low but getting better. Her next appt is in March. I have asked Dr. Cava and Carol, what next? and they said nothing for hopefully many years. That feels so great. But I know that transplant will always be on a monkey on our back. I feel so blessed that she is doing well right now but I still get sad. I think of her heart beating and that something could go wrong at any moment inside of her. But then God reminds me that nothing is certain, even with my healthy kids. These past 3 months have been a little too normal for me and it makes me uneasy. I am anticipating the next moment of crisis but just enjoying every moment of this boringness.
We have more spice rub! Ethan was written up in the Daily Herald and this prompted a visit to the Buchmann’s for a get together and a spice rub adventure. The article is here. Pretty fun! To order spice rub, go to The West 3
Speaking of the Buchmann’s- their annual Wings of Angels Auction is coming up on April 13th. Donations are being collected for their silent auction. If anyone wants to attend to this fun event or to donate a product/gift card… let me know.
Here’s to a wonderful 2013 for everyone!