Post from my mom

Oh my word, what a week I have had!

 

I am overwhelmed by the blessings and the miracles we have seen this past week. Friends, you have loved us well!

 

You all know that Katherine is a Rock Star for doing this blog. I will try to be a guest poster when I can. 

 

I’m sure you can understand that it has taken a while to wrap my mind around all of this. It feels a bit surreal at times; like I was plucked from my normal life and plopped into other. I have been so busy trying to keep up with understanding what is happening with Elsa, learning a new medical language, and helping to care for her. I have not been sleeping very much….

 

Updates:

Tuesday Elsa got her breathing tube extubated in the late morning. By Wednesday morning she was completely off of oxygen and breathing well on her own.Wednesday afternoon we were moved out of ICU and back into a regular room!

 

Elsa’s tumor is shrinking well and her kidney is tolerating the toxins being released into her little body. She is scheduled for more Chemo on Friday and if all goes well we can go home a week from Saturday for about two weeks before we will need to return for more chemo. We will be on a schedule of chemo every three weeks and a hospital stay of five or six days every time.

 

The issue we are dealing with now is that Elsa has been completely off of sedatives since 8:30 am on Tuesday but she has not returned to us. She will open her eyes but she does not respond to my voice. She does not seem to know me from anyone else. She is not sitting up. She is not eating. She is not reaching for things. (Is this starting to sound familiar to those who knew Elsa when she came home at 14 months old?) Elsa has had an MRI and an EEG. The doctors can find no medical reason why she is not alert and functioning as before.

 

I believe that Elsa has gone back to a place that she knew during her 14 months of severe neglect. She is even rocking her head as she did then. She is reacting to the TRAUMA of the past week the only way she knows how. 

 

Elsa has broken my heart from the moment I got her and realized the effects of her neglect. She has taught me and challenged me and inspired me. I see that she is going to continue to do so.

 

I had thought that the past year and a half were almost unbearably hard; parenting Elsa through her insecure attachment, carrying and holding her until I needed physical therapy, reading and learning everything I could about neglect, abuse, trauma, and attachment. I thought that I had turned a corner and the tough stuff was behind me. It turns out I was only in training for the really tough stuff! I am ready, though. I was paying attention during the year and a half training period and I know what to do!

 

I am just a little nervous about what else God is equipping me to do. I feel a little loaded down by equipment about now…

 

If you see my other children please remind them that their mother loves them more than ice cream.

 

Please continue to pray for us. I have seen so many prayers answered this week! If you are reading this, you are a blessing in my life.

 

Love,

Susan