Well we thought we had gotten through the worst of the winter without Evie getting sick, however it sounds like she's finally coming down with some sort of cold. We thought that since Evie has had the RSV vaccine every 28 days maybe she could avoid sickness altogether, but the congestion started 2 nights ago, and is building. With her upcoming pulmonolgy appointment, this is not good. Home health had encouraged us to ask if we could take Evie off of oxygen during the day since she has been healthy for a few months, but if she has a cold it would seem foolish to even ask.
Tonight we sucked her nose out with the bulb syringe, something we haven't had to do in a long time. When we were done I tried to hug her, but she pushed herself away from me several times. I understand that she was just upset with us for sucking her nose out, but it hurt my heart a little. I hope she understands that we aren't trying to hurt her.
We have tentatively scheduled surgery for Evie's feet for Feb 14th! As you have seen in many photos of Evie's legs, her feet are pointed and somewhat turned in. The turning has a lot to do with the bending in her lower leg bones, but the pointing is because her Achilles tendon is too tight. It is my understanding that they will clip the tendon in a few places, alternating sides to make a z shape pattern. Then she will have casts for 3-4 weeks, followed by some sort of braces. Eve's physical therapist and I talked about possibly waiting longer, but I figure we may as well get it over with before she starts wanting to stand and take steps.
I also wanted to say a few things about my Holland post. When I wrote it, it was my intention to encourage moms who are facing the possibility of special needs children, with hope for the future of their family. I completely understand that every situation is different and wouldn't want anyone to think that the way I handle things is "right." For example I was talking to a friend last night about how blessed we are to have the promise of a healthy eternity for our kids, and how hard it would be to face life if we thought that "this was it." She mentioned that birth order could also affect how a family deals with being in "Holland" because 'we had Italy first (Lyla).' Which is absolutely true and I take that for granted sometimes. We had the freedom of life in Italy without the struggles one faces in Holland, before we ventured to where we are now.
So I apologize if I was insensitive in any way to the lives of others. I truly and sincerely love each one of you. In the words of Cathy Anthony who wrote Celebrating Holland - I'm home, "I have discovered that it doesn't matter where you land. What's more important is what you make of your journey"
Love you friends, please pray for Evie. Memories of RSV surface every time she gets congested like this, and I have to work really hard not to worry about her getting that sick again.