Friday, June 27, 2008

Unintended Consequences

This week we got some inspiration to keep going at this blog. Ellie has settled down and is making very slow progress so there isn't a lot of motivation to update with the fine details of her feeding, pooping etc.

Then Abby went in to the monthly Omegaven support group that they have set up at Children's. She went in, sat down and make small talk with the one other woman who was in the room. As the meeting got tstarted the other mother introduced herself, where she was from and why her shild was on omegaven.

Then it was Abby's turn.

"Hi my name is Abby Brogan and our daughter Eleanor was born in April, 2006 with short bowel syndrome. She has been on omegaven since...."

Abby told me that she had to stop because the other mom was visibly upset.

"My baby is alive because of your blog."

No Shit. This really happened.

That is the story as Abby told me when she got home. If that won't get you thinking I don't know what will.

Then to compound that experience, Abby had to go to the 10th floor to return a DVD that we had gone home with last month. while she was there she met not 1, not 2 but four other families who are at Children's because of this electronic shortcut around mass emails.

They all thanked Abby personally for saving their babies. Holy smokes. Imagine what it feels ike to be someone who actually does something to save babies......

So now Abby is in San Diego at the Oley conference talking short bowel and tube feeds with the world. She is there for work and personally and I hope that she comes home with lots of swag for us.

She is contributing to the swag pile by handing out the line covers that I invented to keep Ellie from tangling herself in the three tubes that she sleeps with. My family made a bunch of covers in adult patterns and apparently they are very popular with the adults who are sick of people staring at their tubes as well as the families that are looking to keep their kids safe. Anything to avoid the bare tubes hanging out there. They are now being offered to every NutriThrive client in custom colors and designs. Either to help the tubes blend in or stick out, whatever you want. We are even looking into making insulated ones to help with freezing lines in the winter.

Another unintended benefit.

We can't patent them so might as well make other people's lives better.

Going from this:To this may not seem like a lot but it really is a nice thing, especially if you have three tubes at the same time.
We were handing our extras but, now we are out. I really think that Ellie's doesn't know what is in there when her lines are bundled. Amazing for an idea that came to me at three AM when I was neurotic about her wrapping lines around her neck.

So far so good on the homefront. Flying solo is interesting but tiring. Fortunately Ellie still sleeps 11 hours a night so I have plenty of time go catch up. We've got lots of things planned for the weekend so she should continue this trend.

My vacation starts in exactly 3 hours and four minutes.

Tuesday, June 24, 2008

Travel, eating and poop

Hey there stranger.
Sorry for the delay. We have been very busy the past few weeks and Ellie is doing great. She is starting to gain weight again, and she has even pooped a few times on her own.
Ellie is definitely keeping us on our toes as she runs everywhere. This has been challenging at home but now we are traveling again, so that just adds an extra twist. Over the past few weeks we have had a graduation, visit from Grandma, spent a weekend in Maine and then another in New Hampshire, and we leave for an extended trip to Maine next week.
Ellie has been eating up a storm and seems to be tolerating solid food better. We are crediting most of her positive changes to the removal of baby food with fruit in it. We ran out one day and didn't get new until two days later, and those two days she had the best numbers she has had in a long time. We have tried this before and saw no change, but it is working now, so we will just roll with it. She still eats limited amounts of fresh fruit.
Ellie is doing great at tolerating her formula too, her milk pump is set at the highest rate we have ever seen. She is still only on 20 cal formula, but we think if we keep pushing the solid food we can make up the difference. Now we are going to start plugging the ostomy again to see if we can force more into her colon, and make her hydrate herself more.
Yeah, so you might have guessed, we will also be trying to transition from a crib to real bed over the next few weeks also. I also am gearing up to fly to San Diego for the Oley Annual conference this week. I am freaking out a bit at the idea that I will be a 5 + hour plane flight away from Ellie. But, I hope to get some good info at the conference and make some new contacts and I will probably be talking about Ellie the whole time, so maybe that will help. We'll see...

Sunday, June 22, 2008

All is well

In fact all is too well to keep up with this blog these days.

Ellie is a wild woman and is making nice progress on all of her goals since the last hiccup. She is most of the way back to her full feeding level (almost a month ago) and is showing us that things are back in the groove.

We will try to put up a longer update this week with some pictures of Ellie but we have been brave and traveled with her the last two weekends so we are playing a lot of catch up these days in between trips.

The way summer should be.