Heavy boots... getting lighter

Once again, I have to apologize that we have not kept up with the blog.  I don’t want people to think that now that Emerson is home, the blog is done.  Emerson’s battle is far from over, so we will continue to post as she continues to fight and to progress.

I have to admit that one of the reasons I did not update- besides the frenzy and fatigue of having Emerson home- is that it was not as easy and ebullient an occasion as I thought.   I am currently reading Jonathan Safran Foer’s “Extremely Loud and Incredibly Close”- a great read so far, I really recommend it- and the protagonist, a nine-year-old boy who lost his dad in 9/11, writes about how things give him “heavy, heavy boots” and that best describes how I felt in the week leading to and the weekend of her return.  I found myself avoiding eye contact with people in public because they would be so warm, wonderful, and supportive, wishing us the best and welcoming us home, but I had "heavy boots" and I didn't want to drag them down with me.  Emmy still has so much more to do, so much farther to go and even then, I am not sure we will ever have that same little girl back that I miss so much.  It was really hard to bring this new little girl home, a little girl who whimpered and refused to walk, who just wanted to be held for the first two days because this new and forgotten place intimidated and overwhelmed her. 

Emmy and I feel much better now than when we first got home.  She made some great strides last week:  she learned to say “boh boh boh” in addition to her “mama.”  She likes to mutter this while walking around- and boy does she love to walk around!  She also lifts her arms and says “uhb uhb uhb” when she wants to get up.  Her eye contact is significantly better, and she can sit through a few books- although, she is not quite following along all the time.  She is still eating purees, but she will tolerate us putting chunks of bread or a puff in her mouth.  She will chew and swallow, but she doesn’t eat a lot of solids.  Tonight, for the first time, she got a couple chunks of bread in her mouth by herself.  We were very excited.  Physically, she is stronger as well.  She has pulled herself up a couple of times in therapy and when she walks, she insists on holding one of our fingers even though she barely holds on and doesn’t always need it.  Last week, she took four steps on her own.  Today she took two.  She doesn’t like to walk alone yet, though. Emmy also stopped whimpering and whining when she loses balance or sits or falls.  She doesn’t say “oop oop” like she used to, but she doesn’t get upset at all, which is progress.  I still have "heavy boots" that she has not smiled and laughed the way she used to; I am waiting for that huge smile and silly laugh and original sense of humor, but I think we have a long way to go before that happens.

Emerson definitely acts like a toddler about food.  She chooses what she wants to eat and when.  One day, she’ll eat almost 1000 calories of just about anything, and the next she will refuse those same foods and eat a mere 500 calories.  Sometimes she loves cold food, and sometimes she will only eat warm food.  You just never know with her.  Her refusal to eat at times is not in itself concerning, but we are trying very hard to help her gain weight before her surgery.  Yes, that’s right, I said SURGERY.  Emerson is going in for her reverse illeostomy on January 2^nd.  She will have to get some sort of colon cleanse through a feeding tube that evening, stay over night, and have the surgery the next day.  She will then stay in the hospital for one week as she recovers.  She will not be able to eat the first three days or so after surgery because she has to show she can safely “pass” something before eating.  If all goes well, we should be home again, together, around January 10^th.  We are very nervous to have to put Emmy through another surgery, to have to be in the hospital again, to have to do the feeding tube for a short time again, and to see Emmy lose even more weight (again), but we are very happy to get rid of the ostomy bag that interferes with her daily activities so much. 

So that is the update.  We appreciate so much the support we have received.  The meals, especially, have been amazing!  Thank you so much!   I promise that we will do better with communicating as we get into more of a routine, and I will try to take a video of some of her progress to post.  Thank you for continuing to read and for continuing to support our Emmy.