Thursday, March 27, 2014

Sharing Your Story Can Be Such a Blessing to Someone Else!

I was searching the internet for something else tonight and found this.



It was heart warming to see, and I loved the message.  We hear from families still today that say our blog helped then when they needed it the most.  Even though we don't update nearly as much as we should we keep it up and running just so it can be there to help another family when they need it.  If you have a blog, Facebook page or group that you want to spread the word about just let us know!

Saturday, November 09, 2013

A Very Wet Day

Thursday was a wet day, A very wet day. We were up very early to slog through Honolulu traffic to Hanauma Bay, a marine reserve that was set up to conserve and manage a very healthy and very accessible coral reef near Honolulu.  We were told to get there early to make sure that we had a space in the parking lot (Make A Wish made arrangements just in case it was jammed) and we were there for 9:45 AM, along with about a zillion GoPro-toting tourists that really didn't get the concept of don't stand up on the reef.




But fortunately, I had forgoten that Abby Brogan also moonlights as an underwater superhero and proceeded to escort/drag/carry Ellie past the hordes of googins and out into deeper clearer water where the novices didn't dare.  What they found there was nothing short of spectacular.  Turtles, live corals, and fish like Ellie and I had never seen before.

 
 
Ulua, or trevally, cruising the reef.



Ellie showing off the surface dives that she practiced in the pool all summer.
  

Abby the Underwater Superhero showing off on the bottom


One very cool urchin.


A school of convict tangs

video



One of the many poses that Abby used to escort Ellie around the reef.
 
 
  


All told Ellie and Abby were in the eater for almost three hours with one short break for Elecare and snack. Will, was happy as could be to patrol the shore wade in the warm water and throw pebbles.
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Friday, November 08, 2013

Dry Day

Waterproofing Ellie has been very successful for us over the years:  Some Press n' Seal on the CVL cap and two sheets of Tegaderm over the whole site and she is good to go.  but one of the downsides of this is that more than one day of this makes  her skin raw and sore.  So we generally try to have a dry day after every wet day to let her skin recover.

For our first Hawaiian dry day we took off for the center of the island to the Dole Pineapple plantation, a spectacular tourist trap complete with a narrow gauge train, the World's largest maze (like a hedge/corn maze but with hibiscus)  and more pineapple desserts and concoctions than you could imagine.  The kids loved it and we had a blast and we were home early enough to have a rest before Ellie got to do one of the other things on her Wish:  A luau.



The Brogans, via the sea!



And yes, Ellie was on stage more than once.


But this was all a warmup for the coming wet day when Ellie finally got the chance to swim on a coral reef.

Tuesday, November 05, 2013

Two-fer

Charismatic- (karizˈmatik/)
Adjective. exercising a compelling charm that inspires devotion in others.

 Megafauna- (ˈmegəˌfônə/)
noun .  the large mammals of a particular region, habitat, or geological period.

Monday was a good day.   Especially for a girl with her heart set on seeing big ocean critters.
A spectacular dolphin experience in the morning:

Followed by a Do-It-Yourself turtle safari with Abby in the afternoon:




Yes, Monday was a good day.  

For Will as well: 


Sunday, November 03, 2013

The unfiltered early returns


After a quick dry run in the pool this morning, Ellie, Abby and Erin took to the sea to see some fish.  

Here is Ellie's unfiltered words fresh out of the water:


A success.  

Abby had to drag her away from the fish.

Friday, November 01, 2013

What's your Wish?

Make a Wish

And We're Off!

Yes, after months of planning and the requisite extra fun that comes with a girl with some extra considerations, we are finally off to fulfill Ellie's Make-A-Wish wish:  to swim with sea turtles and dolphins, see a volcano and go to a luau.  

Yes, if your deduction is up and running, we are off to Hawaii!  Tomorrow morning to be exact, and we couldn't be more excited.

We have known for a long time that Ellie would likely qualify for a wish and almost a year ago we started the process to apply.  As we expected she was quickly approved and then it was just a question of timing and the coming week is just perfect.

So at 5:30 tomorrow morning the magic limo arrives and we (Abby, Ellie, Will, myself and Ellie's nurse, Erin) are off to Oahu.  Ellie is armed with a sleeve of tegaderm to waterproof her CVL, a fresh snorkel to keep up her skills from the pool this summer and a new underwater camera.  She has learned her Hawaiian fish names and even used Humuhumunukunukapuaa as a special second grade spelling word this week.

We will be sure to take lots of pictures and are going to dust off this old blog to make updates along the way. 

It should be quite an adventure.  And if we get more than we bargained for, a doctor that used be with the Children's Short Bowel Program works in Honolulu.

Friday, March 29, 2013

Updates. Good news, Great news, Not-so great news and other things


I'm not sure if it is the the facebookification of the world, the onset of the Age of Will who is now 2 1/2 ,  Ellie hitting her stride as a school-aged kid, some other factor or a combination of a bunch of these but we have been seriously negligent in updating this blog for a significant amount on time.

So I will try to update all fronts here with the latest and greatest from Broganland.

Ellie:  Ellie is great. 




A happy soon-to-be seven year old, she goes to first grade every morning on the bus with her nurse/consigliere and loves first grade. Two different rounds of show-and-tell with her class have made her medical issues more of a fascination for her classmates than a problem.  She routinely gets supplemental IV hydration mid-day without missing a beat or a call home.  She just gets off the bus some days with a IV backpack. Abby and I just look at each other and thank the Commonwealth of Massachusetts for good nursing.

Ellie's school couldn't be more accommodating.  Everyone from the Principal to the nurse and her amazing teacher are great for us and do what it takes to keep Ellie going.  Even the food service people are bending over backward to include Ellie in school lunch by sending us their recipes and preparing special meals for Ellie so she can go through the lunchline.  Just like everyone else. 

We got great advice when we were moving-our town is truly where you want to be if you have a kid, especially a kid with some issues.

Some very cool news:  Because of her diagnosis, Ellie was approved this Spring for a wish from Make-A-Wish!  We have known for a while that it was  a possibility because of her central line and other factors so I sent an inquiry thinking that it would take a while to get things rolling. Boy was I wrong! Within a week, we had a full approval and a home visit scheduled and it looks like Ellie the fish/science geek wants to go to Hawaii to see sea turtles and volcanoes.  We are looking at timing and details but it should be sometime before next winter.

Some not-so-cool news:  Ellie has been off of TPN for more than two years now, but in the past six months her growth has stalled when it should be moving steadily upward.  We have tried a lot of tricks but we are heading in on Monday to restart TPN and give her the boost that she needs.  We will be at Children's for 3-5 days next week getting her restarted and watching for a side effect of restarting TPN called Refeeding Syndrome.  As we have experienced in the past, if the shit hits the fan, it is much better to be at Children's than at home. So we will go in on Monday, hunker down with all sorts of distractions and wait between frequent blood tests until it is time to go home.  This isn't a big mental setback for Abby and me.  Ellie hasn't made progress toward life without IV bags in a long time so our feeling is to get her what she needs and add some muscle and height.  Adding TPN adds another few minutes to our day and adds one pump to our arsenal but is not a significant change for us.

In Puder We Trust. One of our chief concerns in restarting TPN was what lipid Ellie would use.  The strict Omegaven protocol prohibits kids that have been off for more than a year from restarting Omegaven.  Which meant that we would be looking at Intralipid, as Ellie's lipid source- the same stuff that whacked her liver when she was an infant.  She is older now so the effects of Intralipid would likely not be as severe as a few years ago but there is that risk and her liver is already damaged so we were anxious.  Fortunately,  if there is one person who was more concerned about this than Abby and me, it was Dr. Puder at Children's who got Ellie on Omegaven back in 2006.  He went to work and within days of the nutrition team scheduling her admission, he had persuaded the FDA to give Ellie special approval to restart regular infusions of menhaden squeezings. 

She will not spend a single night on Intralipid. 

Ellie's compromised liver and her parents both did the same little dance that Carol the nurse did when we got the news that Ellie was approved in 2006. 

Omegaven Saves Lives.  

Will:  What to say about Will?  2 1/2 and everything you would imagine from a boy that age. Trucks, boats, cars, Richard Scarry and a vocabulary that is growing exponentially along with the length of his sentences. He is wonderful and oves his sister.  The other night Ellie's baby monitor stopped working in the middle of the nightand her pump alarmed when the battery died.  Will heard this and started yelling to us,"Mom.  Dad.  Ellie pump Beeeeeeping!  Ellie Pump Beeping." 


He is awesome.

We think that he will miss Ellie when we go to Children's next week.




Here's to hoping for an uneventful visit to 300 Longwood next week.