Santa, are you reading this? Here is my list!!!

Dear Santa,

My name is Emerson Roessler, but you may know me as Emmy or Emmy Ems.  I have been a very, very good girl this year.  Need proof?  Well, I got super duper crazy sick a few months back and even though it was really, really hard, I got better.  When I finally woke up, though, after being sick and in a coma for about one month, I was weak, so I have had to work very, very hard and do things I don’t even want to do that doctors and therapists and my mommy and daddy make me do because they tell me it will make me stronger.  I rarely whine or cry when they make me do this stuff.  Plus, I have this itchy, yucky plastic bag on my stomach that is super uncomfortable and my mommy and daddy have to change it all the time, and I really don’t like it, but I am pretty patient and quiet most of the time, especially when they sing to me- which, incidentally is how I learned of you because lately Mommy has been singing me “Santa Claus is Coming to Town” which is where I learned that you bring good kids presents.  Still need more proof that I am a good girl?  Sheesh, you are a tough person to convince.  Okay though.  Here is a list of things I have worked on and learned to do since getting sick:

I can now pull myself up to the standing position.  Yes, I did attempt to use my baby cousin as support tonight, and yes, he did fall down and cry, but most of the time I use more stable objects that don’t cry and this is a really big deal because Mommy and Daddy and my therapists have been trying to make me do it for a couple of weeks now.

I can walk really well holding onto an adult’s one finger.  I can even take a few steps on my own, but I don’t like to.  I am a very careful little girl.   I promise I will walk on my own soon though.

I can drink from my sippy cup by myself, and I get a TON of my daily calories this way because I love to guzzle my milk (well, really it is formula, but I call it milk).

I eat.  I consume most if not all my daily caloric needs, and I now eat more pureed vegetables and meats, which I would not do before.  This all started because my mom asked me to.  When she puts me to sleep each day by cuddling with me on the couch, she tells me who loves me and sometimes gives me goals.  A couple times,  I could tell she was ready to cry when she gave me these goals, so I did my best to meet them, and so far, I haven’t missed one.   At the end of last week, Mommy asked me to please eat more because I am a "Skinny Minnie" and I am having surgery soon, so she wants to fatten me up.  So, I started eating a lot more and I even gained 1.5 lbs.  this week.  Also, she asked me this week for a little laugh so that she knows I am still the funny girl I used to be, so a few times this week, when others were laughing, I mimicked them and laughed, too.  Tonight, I was so happy to get home that I laughed when we walked in. 

I can crawl.  I know, if I can walk, big deal about crawling, right?  Well, it is a big deal, Santa.  I am not trying to be a baby here.  My arms were too weak before, but now I crawl to anything I want, which is great because it sometimes makes Mommy dive across the floor after me and yell “no, no, no!” like when I try to eat the Christmas tree.  Also, crawling requires both sides of the brain and that is good for my cognitive recovery, Santa.

I can clap.  I don’t really do this on demand yet or with music or anything, but I have really gotten into clapping lately, which also requires coordination from both sides of the brain.

I can play with my toys.  For a long time, I was not really interested in toys, but now I explore them all the time.  I especially like my electronic books right now because I can press the buttons to make them talk and sing, and I like to flip them around to the speaker side to figure out how it makes the sound come out of there.  I also just started liking my farm again today. I like to open and close the different farm doors and hear the animals make noise.  I am very good at playing on my own.

So, Santa, as you can see I am a very good girl.  Some would have been cranky about getting sick.  Some would fight their parents or therapists, but not me.  I am working really hard to get better, Santa, so I think you should give me everything on my list.  Here it is:

I want you to make Christmas extra special for all of the doctors and nurses at Loyola who made me all better.  I don’t know them yet, but they are some of the most important people ever, and not just to me, but so many kids.  You need to be extra good to them.  Give them everything they ask for.

I want you to also make Christmas extra special for all of our friends and family.  Give them everything they ask for, too. They have helped so much.  Mommy and Daddy would be starving without the meals delivered, and the special emails and cards and gifts have kept my mommy and daddy so positive, so please make the holidays super wonderful for all of the people who have helped us.

So what about for me, Santa?  Well, I am glad you asked.  I would like a voice.  I know I have a voice, but it is not the same as before.  All I can say is “mama” and “boh boh boh” and “up up up” and “mih” (milk), so if you could help me to learn Dada again that would be a great start.  After that, if I could get those animal sounds back, that would make Mommy and Daddy very happy.  To do that, I need my attention and hearing to improve, so really, I guess, I am asking for that, too. 

I think that is it, Santa.  I hear that you are magic, so I hope you can make these things happen.  I am sorry that I cried on your lap last year, and I am sorry I knocked over my cousin tonight, and I am sorry I threw my milk everywhere today.  Please do not hold these minor infractions against me.  I promise I will be super good in 2012.

XO,

Emmy

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.  

From Emerson's Aunt Katy

I know we are all very excited about the news of Emerson's homecoming. I'm sure you all feel like you have been on this road with Brian, Jessica and Emerson. To finally hear this wonderful news during this holiday season is the best present we could ask for. Brian and Jessica are so grateful to everyone for their support. It has been a comfort for them to know so many people have been on this long journey with them. Although it is not complete this is a leg of the journey they have been anxiously awaiting. They will finally all be home together. Such a normal thing for most of us, but has not happened for them in almost 3 months.

Since the day Emerson went into the hospital so many of you have contacted Steve or myself with offers of meals for Brian and Jessica. We have always said that they were not needed at the time but would be appreciated when they finally made it home. Well, here we are. They will still be spending three full days a week at Marianjoy as well as working diligently with Emerson at home to help her to a full recovery. Actually cooking a meal will probably be a low priority on their list of things to do. If cooking a meal for them is something you would like to do, I am sure they would be grateful. We have already had offers so I thought I would try to be organized so the wonderful meals do not arrive on the same days. Please send me an email (roessler.email@gmail.com) and I can tell you what days would be good or just let me know what day works best for you.

Brian, Jessica and Emerson will be in and out most days at rehab and doctors appointments so they may not be home when you come by. As we can all understand they are leery of exposing Emerson to too many people especially during flu season so please don't be offended if they don't invite you into their home.

Our whole family has been so touched by how many people are not just following Emerson's journey through this blog but participating in her recovery through emails, texts, thoughts and prayers. We are thankful to you all and will continue with the updates as Emmy comes home and enters this new leg of her journey.

Many Thanks,
Aunt Katy

Some Updates

No, this is not a litter box.  This tub filled with rice and beans and toys is a therapy to test Emerson's vision and engagement.  She has to find the toys in a textured visually confusing environment.  The toys, are mostly buried.  Overall, including the rice and beans, Emerson has been doing really well.  Most days, her eating has been around 75-80% of her caloric goal.  She recently had a couple of off days but the overall trend is upwards.



A couple of YouTube Videos:
Emerson Yelling
Emerson Drinking

Babble

Gelukkig Sinterklaas Dag!

51.23 (51 Days Since Emmy Got Sick; 23 days since Emmy got to rehab)

Ems loves to walk.  Her shopping cart was a new edition.  I referred to her as old lady several times this evening.  Emmy needs to be consuming 1200 calories a day.  Yesterday, she had about 450, the day before she had 740.  Today Emerson closed out the day at 950 calories!  Looks like we can keep that feeding tube away.  Enjoy the fun facts.  


1,350 Emails to Emersonroessler@gmail.com

58,234 Pageviews emersonroessler.blogspot.com

Emmy sucks!

Already, Emerson has done something very important today:  sucking.  My goal was for her to drink 4 oz of her Alimentum formula from a sippy cup by the end of the day (Alimentum has 20 calories per ounce and hydrates-wohoo!).  Already, she has consumed 2.5 oz by 9:15, so I think she will surpass that goal.  This is all because she figured out how to suck instead of requiring us to give little squirts in her mouth.  She was GULPING it down a bit this morning.  It was great to see.  Her eyes would get really big and she would take a big breath afterwards from drinking so much (for her).

Maybe this is the BIG thing she does today.  It is only 9:45, so we'll see, but if it is, it is a GOOD thing.

Emerson: a comparison

I cannot even begin to count the number of times I have begun a sentence with the phrase "Before she got sick, Emerson would..."  I get asked questions all the time by doctors, therapists, nurses, and concerned or curious people we meet concerning what she was like or what she could do.  It is part of the rehabilitation process to know where she was, so we understand how far we have to go.  I think I also make these statements, though, without being asked because I want them to know that girl, because I want them to know why we miss that girl, because I DO miss that girl every single day, and because  I cannot help but desperately look for that girl in everything she does each day.  Here is a brief summary:

Before she got sick, Emerson would get up early... like 5 or 6 a.m.  Now, Emmy sleeps in.
Before she got sick, Emerson would wake up abruptly, jump up and call for us loudly and chatter all day.  Now, Emmy has a hard time waking up; she takes her time, and then points for food and whimpers if she doesn't get it quickly enough.
Before she got sick, breakfast was Emerson's worst meal because would much rather start playing.  Now, Emmy eats the most at breakfast, taking her time to get as many calories as her starving stomach can hold.
Before she got sick, Emerson would sit or fall down and giggle and say, "Oop oop!"  Now, Emmy gets the littlest bump and whimpers or cries and asks to snuggle.
Before she got sick, Emerson took very short naps. Now, Emmy loves, loves, loves to nap.
Before she got sick, Emerson would point at dogs and say, "Woof, Woof!"  Now, Emmy points her fingers up her nose to itch or at her mouth for food.

Before she got sick, Emerson would move carefully so as not to get hurt; now, Emerson moves VERY carefully so as not to get hurt.
Before she got sick, Emerson refused pureed meats; now, Emerson finds pureed meats abhorrent.
Before she got sick, Emerson liked to snuggle; now, Emerson LOVES to snuggle.
Before she got sick, Emerson loved to scream; now, Emerson's voice disappears as she tries to scream.
Before she got sick, Emerson charmed everyone into liking her; now, Emerson charms everyone into LOVING her.

Sometimes, I feel these comparisons are unfair; sometimes, I think it is ONLY fair to continue to make them to demonstrate the hope that she CAN fully recover, that she WILL become that girl again.

I could not help but reflect on these things throughout the day because, I think, today was such a blah day.  There was nothing new and exciting that she did like other days.  For instance, yesterday she took liquids for the first time after she ROCKED her swallow study.  Today, she wasn't as interested in drinking, and she was SO TIRED, the she couldn't eat as many calories as yesterday (despite my best efforts to add butter to EVERYTHING).

Oh well.  Tomorrow is another day, and I can only hope she needed all this extra rest today to do something BIG tomorrow.  And speaking of tomorrows... we only have 8 tomorrows left before being discharged.  The doctor has asked our insurance to keep us here until December 9th; insurance negotiated with the 6th, but I imagine that the doctors will get there way- they have had to appeal on our behalf many times now and usually get their way :).  SOOOO... we are hopeful to be home next weekend.  The reason they want to keep her another week is to make sure she is properly fed and hydrated.  If she does not start consuming more calories in the next four days, Brian and I will have to be trained to put the feeding tube back in so she can get extra calories every night via a feeding tube.  We are trying our best to avoid that, but either way, this next week is about getting Emmy enough hydration and calories so she can safely go home with us.

Brian will be around this weekend, so maybe you'll get some exciting videos instead of some random, boring, verbose tirades.

PS-  the finger up the nose thing mentioned earlier... I have been wanting to tell her to stop doing that, but I was told by her OT that it is actually a good thing because she is using her pointer with both hands and it is a higher order skill (who knew?) so I allow it... for now :)