Tuesday, March 25, 2008
Apparently running with your hands in your coat pocket looks like fun but is lousy for the balance.
She was most unhappy that they had to leave the field and go home.
How she lands on her belly so often without the g-tube button hurting is a mystery that I just can't quite figure out. It must be like sitting on you car keys but with your belly....
A little tylenol for the lip and she is good as new.
She is way tougher than I am. I'm glad Abby's genes are showing through in the toughness department because if she were a pansy like her dad we'd all be a lot worse off.
All of these bruises just in time for a clinic visit on Thursday.
Really Dr. it was the baseball field.....
Saturday, March 22, 2008
Believe it or not, this is Ellie's third Easter.
The first was in the Yale NICU. Apparently Easter happened on 4/16/2006 even though I don't remember it happening:
The second was last year in Wellesley:
and now this year:
As we approach her second birthday it really seems like it all happened yesterday but then again we really have to think hard to remember what it was like before Ellie came along. Looking at her these days you would never know what she has been through or the number of scary days that went along with the pictures. The bright and shiny little girl that we have now makes us forget it all most of the time.
Today we took Ellie to the postponed Wayland Easter Egg hunt that was supposed to happen last week but was mercifully postponed when it was 30 and raining/snowing. Today was a beautiful blue sky day and other than it being chilly and windy, we had a great time as Ellie picked up some eggs with the rest of the under-2 kids in town:It took a total of 11 minutes which was just right considering the age of the kids and the temperature.
Ellie thought that the whole thing was lots of fun and really didn't mind recycling eggs to 'find' them again. she is such a good sport.
She even was brave enough to meet the Easter bunny and give him a high five.
And we even remembered to bring the video camera:
Monday, March 17, 2008
We have been a bit lax on the photos lately and finally pulled out the camera this weekend for some fun with Ellie's new big girl clothes. Pants and shirts are now in play since her ostomy is much happier and sometimes lasts 3-4 days between changes.
This is Ellie's tiger impression:
And her pink feather boa:
And her best friend Gus. In the morning she alternates between calling for 'Ma', 'Da', or 'Ga' when she wakes up. The Best Dog Ever!
I reached the maximum number of vacation days that I can accumulate and had to take some days off to start earning new days off so this week I am technically 'on vacation' even though I fielded two work calls this morning. Shh. don't tell Abby.
To make it an official vacation we took Ellie to the Boston Children's Museum today. Our library has discount tickets which makes it even more fun.
Ellie and I took turns driving the Bobcat.
And then we watched the turtles from below. Red ear sliders for you geeks like me.
We are heading to the aquarium later this week. Our fish girl should be a in rare form for that and I will make sure to take pictures. In the meantime we have a long list of things that we need to do around here and will let Ellie and Karlene do their thing while we pick up the house to-do list that has been gathering dust since September. Hopefully things will look a lot more finished by the end of the week.
Sunday, March 16, 2008
She has lots of opinions, has learned to cry on demand to get what she wants, has learned to operate the DVD player without help -we're not so proud of that one but it has been a long winter.
She can also say I love you in her own version of sign (see the heart?):
She also is becoming more aware of what is going on around her and also what is happening to her as we do all of her medical care. She knows things that might hurt and we have to be very careful to talk her through the things that will hurt as well as those that won't since right now she assumes that everything that comes from a tube or on a q-tip will hurt like the horrible silver nitrate that is used to cauterize her g-tube site.
We have a long road ahead of us and if we aren't careful Ellie could really hate her care instead of the very cooperative little girl that we have now. Through lots of work she will lay still, raise her hands and keep her legs down while we do sterile things which according to some other parents is downright amazing.
Another part of her increased awareness is her understanding that she has tubes and things that other kids have. I'm not sure if Abby planned this but a copy of Madeline has recently gone into heavy rotation for bedtime and Ellie loves the fact that Madeline has a scar. She even points to her belly every time that Madeline shows off her scar which is just great.
Abby attended a conference for work today that had a speaker from Children's who presented a talk on how to best work with kids who are long term patients. As we move along with this adventure, I am sure that we will learn much more about helping Ellie manage with her awareness of what is going on.
In the meantime it is looking like Ostomy Otto will be getting a friend for Ellie's birthday- the Madeline dolls apparently come with a scar.
Tuesday, March 11, 2008
Ellie has had a great two weeks since we went in for her last upper GI contrast study. Her ostomy is behaving, she is pooping for us almost every day with only a bit of 'encouragement' (a glycerin suppository) every few days, and her feeding is advancing to a rate that we haven't seen in a long while.
And what great thing did we do after running a load of barium through her and coming up with a plan for medications and other elaborate two-day inpatient tests?
Really almost nothing except reduce the concentration of her Elecare from 30 calories per ounce to 25 calories per ounce.
Instead of dumping the Elecare and a lot of other fluid when the concentration was high, she now is holding on to it which is great.
Very simply it is like she had chronic diarrhea through her ostomy when she was on 30 calorie formula (you would too if you only ate sugary syrup, right?).
So now we wait and watch and slowly increase her feeding rate as fast as she can handle it. The funny thing is that by reducing the calories in each ounce we can now give her a lot more calories. Sort of a two steps back and three steps forward- another round of short gut cha-cha.
And all of this because our compounding pharmacy still hasn't shipped her meds. If you are in the Boston area, try and find another pharmacy than J.E. Pierce in Brookline. They screw it up more than they get it right.
Really. I made three trips for a single prescription not long ago. and we've never had an order filled correctly, on time and without a hassle.
I guess I need to call them and tell them to keep their reglan. Things are moving just fine without any chemical help.
Monday, March 10, 2008
Today we had a very brief go round with the world of making money from this blog when I enrolled it in the Google Adsense program that would pay us to have ads in the margins and above the text. Apparently, if you have a fair number of people viewing your site they can make you some money. We figured that we would give it a try and see what happened.
Who really notices the ads on websites anyway?
If we are going to talk about products and companies we will do it with full control and without anyone buying our space. We will start making a list of the companies and products that we use with Ellie and will discuss them in hopes of helping other parents make good decisions about how to best help their kids with short gut. We have used a bunch of products and a couple of providers for Ellie’s supplies and we will share this with others who are in the trenches and need all the help that they can get.
One great example of a product that we love is Ellie’s enteral (feeding) pump called a Zevex Infinity. A tiny little pump that is so small that it can fit with her formula into her tiny little backpack. This is the first bit of advice that another mother of a child with feeding issues gave us in our first room at Children’s before we accepted that she would be in the hospital long enough to need a private room. She told us to make sure that Ellie got a Zevex because there is nothing like it and it will change her life. She was right on both fronts- there really isn’t anything like it since the next size pump is more than twice the size and also it has changed her life allowing her to be mobile and even learn to walk and run with the backpack on without any ill effects.
We have also been told that some companies, both insurance and home providers, are hesitant to provide the Zevex for little kids, preferring the bulky competition. Our advice is to fight for this one.
There is no substitute. Except, maybe Pump-Free:
One interesting exception to all of this advertising is that Abby has started working for NutriThrive , one of our supply companies this winter so our comments about them may be seen as more than pure commentary on the company. All I can say to this is that we were very happy customers before she ever knew of a possible job and that we pull no punches to get Ellie what she needs.
Tuesday, March 04, 2008
They got home soon after that and I imagine that the two of them are piecing the day together looking towards bedtime.
I am off to get a phone card to make up for the crappy cell phone reception.
A nice view of the Chesapeake but not very functional.
Since everything was relatively stable with Ellie, I made plans to come to this year's meeting and flew last night from Boston to Richmond, VA where I would drive on to the meeting site on Chespeake Bay.
The flight took One hour and 18 minutes. As I got off the plane, I saw that I had a voicemail from Abby.
No big deal, I'll call her back.
No answer. No answer. No answer on the third call.
Try the cell phone.
'Hi Gib!. Yeah, we're at the Children's ER. Ellie's Omegaven pumped too fast and she got all of her 82 ml in an hour and a half.'
Giglle giggle squeal in the background.
'She's fine and Dr. Puder called me at home to tell me it is okay but they want to check her blood triglyceride level.'
I was in the air for 1:18 minutes and all of this happened.
'I'll be on the 7:05 flight back tomorrow, okay?'
'No, she's fine, I'm fine. Stay there.'
"are you sure?"
"OH yeah, Colleen says hi. I couldn't get in touch with anyone else while I freaked out so I called her."
It is 8:15 right now and I haven't heard from Abby so I assume that things are good. Apparently dr. Puder has seen this a bunch so far with both Omegaven and the older lipid, Intralipid. He told us that she should be fine and that Omegaven should clear from her system well. If she had been on intralipid, things would be much different and this kind of thing is known to ruin livers...
Gotta love fish oil.
Oh yeah, my meeting is in rural Virginia and I have no cell service. Coincidentally I am not five minutes from the fish processing plant where the oily little fish are processed into the oil that becomes Omegaven.
Things are okay but may change. I am not on the road home right now but may be soon if abby says the word.
Have I mentioned what a rock start my wife is?
She's on my team.