WalkAmerica: Crunch Time

Only two more days left until the BIG day. I had such big plans this year, but due to recent events, was unable to do everything I had wanted to do in terms of fundraising.

I am so grateful to our friends, family, and blog readers, who have gotten us to where we are in terms of money raised so far. Thank you all so VERY much!

By my calculations, if everyone reading who hasn't already donated, would donate just $1.00, we could easily reach our goal! Just $1.00. That's less than a cup of coffee at Starbucks (a lot less). And it would make me so happy...

http://www.walkamerica.org/HollandEden

Free at Last

It's true! It's true! They finally let us out! Everyone is feeling pretty great, and is so happy to be home, Eden most of all. She ate like a total pig all evening...like she couldn't get enough food. She had dinner twice. Spaghetti with meat sauce the first time, with four orange slices for desert, then fajita chicken with sour cream and guacamole a little over an hour later, and a WHOLE bag of Gripz chocolate chip cookies for desert (these are Eden's favorite snack EVER and the only thing she would eat while she was sick. Holland's staple is chips, Eden's is cookies). She couldn't shovel the food in fast enough. If she keeps this up for a week or so, she should gain back the weight in no time. She also drank 12 ounces of her 27cal formula today, which she had been refusing all week. That's almost back to normal.

It was SO FUN to see how happy she was to be home. She was squealing and smiling all evening. She fell asleep having a breathing treatment, and BOTH of my girls are now sleeping soundly in their OWN beds. So now I've gotta go. I'm going to go sleep in my OWN bed, with my hubby, for the first time in WEEKS!!!

She Found Her Smile

Eden had a pretty good day. She was able to get up and around in her walker a little bit, and finally found her smile. It was sorely missed on the few days it was absent. She got many compliments from strangers. One person commented that she "smiles with her whole body." It's true, and something we've recognized since she was a tiny baby. I love that smile.

Eden was much calmer and more content today, and she had a pretty good appetite...for her. Her oxygen sats are good when she is calm, but they drop into the 80s when she gets worked up, such as after she plays for a while in her walker. She spent a couple of hours last night, and a few hours today, off the oxygen, but she still needs it periodically. Regarding going home, the doctor today said the dreaded words "maybe tomorrow", but I think Tuesday would be a safer bet.

I've been amazed and dismayed to notice how much worse Eden's CP symptoms are when she is sick. She is a total rag doll in the trunk, and her legs are stiff as boards. I've actually never seen her legs as stiff as they are. Her left leg is especially bad, and is kind of rotating in. I'm really stressing out worrying about it pulling in her hip socket. We try stretching, but it is really difficult. It makes me realize that what I've always considered mild for Eden, may actually end up requiring intervention, like Botox and hip surgeries down the road. And with her trunk being so floppy, we also have to worry about scoliosis and possible spinal fusion in the future. I always try to take things a day at a time, but I guess I have to be prepared for the worse.

In addition to the CP issues, there has been talk of following up with an OT at the University Hospital for a swallow study, then maybe an overnight pH probe study from there, to look at her reflux and possible aspiration. The words "g-tube" and "nissen fundo" were mentioned, but that is still in the long term and depends on what the results of other studies show.

In addition to ALL of this, I also talked with the ENT who did Eden's cochlear implant sugery a couple of weeks ago, and her referred us to another ENT to look at Eden's tonsils and adenoids. We're considering having them removed to help open her airway. She is really snorty when she eats, and we have wondered whether this might be contributing to her eating difficulties. She also snores.

Where do you draw the line in all of this? How much intervention is TOO MUCH? How do you weigh the risks of the surgery, and the fact that it might not even work, against the benefits? I hate worrying about all of this all the time. I can't stand the thought of putting her through any more procedures and surgeries, but I know I won't be able to avoid it forever.


Don't mind Mommy's hair in this pic and Eden's hair above. It's been a long week and we've bigger things to worry about!

Silly Putty

Hello, Goodbye

"I don't know why you say goodbye I say hello."


So, Holland had a great night. Her sats dipped into the high 80's a couple of times while she was sleeping, but she recovered quickly and spent most of the night between 90 and 92. During the day she is back up around 96 and was officially discharged this morning!

Poor Eden on the other hand, had a very rough night. I went home from the hospital last night to shower, leaving my mom and dad with Holland. When I got home, Eden was in a pretty rough state. She was moaning and whimpering, had a fever, and was doing a weird grunting thing when she was breathing. She hadn't eaten or drank anything since earlier that morning. I tried to give her Tylenol and she spit it all out, held her breath, and took several minutes to calm back down. She was coughing continuously, with a cough that sounded like she was dying. Seriously.


So, we finally broke down and decided to take Eden to the ER. Upon arrival, she was satting 95, but as soon as she got the least bit upset or aggravated she began coughing and her sats dropped into the low 80s. She also showed moderate ketones in her urine, suggesting that she was dehydrated. With MUCH drama, they did a chest xray, and started an IV. The xray showed "extensive infiltration" on both sides, in other words, pneumonia. She was admitted, and we finally made it to her room, across the hall from Holland, at around 2am. John and I finally made it to bed sometime after 4.

Today we put Eden on a nasal cannula for oxygen. She screamed and fought and tried repeatedly to pull it out. I had to hold her down. I am SO TIRED of holding my kids down so people can hurt them. I know it's necessary, but I still hate it. It goes against every fiber of my being. I want to cuddle them and comfort them and make them laugh. I don't want to hold them down so they can be hurt. I hate that part of being a mom.

Even so, through it all, the WORST possible was the news we got when Eden was weighed yesterday. It brings me to tears to talk about it, and even just writing this I want to bawl. 17 pounds 11 ounces. That's at least two pounds lost. I can't believe it. I feel so defeated. It took us almost a year to gain those pounds.

When It Rains...It Pours

Eden honey, when I said I missed you, this was NOT what I had in mind...

Desperate for Entertainment

I don't know how many ways you can say the same thing... We're still here. We have had Holland on 1 liter of O2 for the past couple of days, trying to give her a little boost so she can work less on breathing and more on eating and getting better. I don't know if it is working, or just the benefit of more time, but she is definitely feeling pretty good. We're going to try taking her off the O's at dinnertime today, to see if she can maintain tonight. If she does well, then maybe tomorrow...hahahahahaha. Yeah right.

Daddy took Eden in today for her third visit with the pediatrician in less than a week. She has another ear infection, so is starting a second course of antibiotics. She is still needing breathing treatments every 2-4 hours, but her oxygen saturations are holding steady in the high 90s, so no hospital for her yet. She has shown slight improvement in drinking fluids over the past two days, so that is good news too. She has another appt tomorrow at 9:40



I'll try to post some recent pics of Eden next. I have the camera with me at the hospital so for now you get "The Holland Channel...All Holland, All the Time". (Those of you who watch Elmo's World over and over and over and over will appreciate that!) Gah! If I have to watch another episode of Sesame Street, Blues Clues, Barney, or The Wiggles I might go CRAZY!

No Go

She'll look at me, and she'll smile, but she won't look at me and smile at the same time!

So, it's a no go. I was right the first time. Maybe today, maybe tomorrow, maybe by the weekend, maybe in a week, maybe in two weeks. Someday, I guess, we'll go home. But for now, we're still here.

Sorry for getting your hopes up.