Eat Happy!

Eat Happy!


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Monday, June 25, 2012

Philly Fun

It wasn’t all doctors appointments and testing while we were visiting Philadelphia a few weeks ago.  We had the opportunity to venture into the city with our host Jennie.  We decided to check out the Penn campus and visit the “Please Touch” museum.
On the first day, Ian was running all over campus, little backpack “feeding backpack” and all.  He fit right in with all the other students.  It was adorable.  He was picking up all the ladies.  Jennie, a great photographer, took some family photos and some of us having fun with Ian on campus.

mini-LOVE sign on Penn campus
Ian playing with LOVE 
Discussing life with Ben Franklin

Playing on the Penn campus stairs... no surprise there!

Playing on a "button" statue on Penn campus

Playing on Penn campus stature steps

On the next day, we ventured through west Philly to get to the museum.  I found myself singing all the “Fresh Prince” lyrics as we traveled by.  We were definitely in a part of town where we promptly locked our doors.  Then, all of a sudden, poof...... a beautiful part of town with a very large museum in a large field.
Ian had a grand time in the museum.  It is designed so that the children can touch and play with everything.  Ian played with a “water park” with ducks and toys.  They had the cutest aprons to put on to keep them clean.  Ian also enjoyed the rainforest, cars, trains, and construction site.

Rainforest playtime

Water pool

Two of his favorite places to play were the Alice in Wonderful exhibit and the Space exhibit.  Alice in Wonderland had a cool rabbit hole and an awesome maze with all the characters included.  I particularly enjoyed the room which began large and got smaller as you walked through.  We had a great family photograph there.  The mirror mazes and bits of cookie were a nice touch too.
Rainbow in Nursery rhyme exhibit

Spinning Wheel

Mother Goose

Alice in Wonderland mirror maze

Alice in Wonderland room

Alice in Wonderland tea party

Alice in Wonderland maze

Alice in Wonderland maze

After the nursery rhyme exhibit where Ian could climb on geese, play with a spinning wheel, and rock on a boat, we went to the Space exhibit.  There was a very large telescope with a rocket launcher and a pad where a camera put you on the moon on a big screen.  Ian had fun pushing all the spaceship buttons.

Space Camera

Rocket Buttons

Space "wheel"

The museum also has great places for kids to grocery shop, walk down streets where tailors and restaurants wait on you, and even a large piano as featured in the movie “Big.”  Ian was running back and forth making all sorts of music and lighting up the keys.

"I'll take 3 of these please"

"That's $4.50 ma'am"

Song writer Ianer Beaner

After all this fun, Ian was very sleepy and he took an excellent nap.  I hope we can continue to do fun things with him as we travel back and forth.  I love the idea of making Philly fun for him, while the doctors help him at the same time.

Saturday, June 16, 2012

Endocrinology Update

Ian's endocrinology appointment went well. The Dr. does not believe that all of Ian's grow retardation is due to feeding and nutrition troubles. With significant intrauterine growth restriction and prematurity, is catch up growth is lagging significantly.

Since he is not happy with his weight, nor height, he is definitely considered a candidate for growth hormone injections.

However, he would like to wait until after the hernia repair and evaluate how he grows after that. If by November, he is still significantly behind, we an begin growth hormone injections after reviewing protocol and risks involved.

Since two problems are contributing to his growth problems, one needs to be settled before the other can be addresses.

Also, Ian needs I have some blood work to evaluate his thyroid first. This serves two purposes, one to make sure it is functioning properly and not causing growth problems, but also to make sure it is safe for hormonal therapy.

Thursday, June 14, 2012

CHOP Surgical Pre-Op For Hernia Repair

OK, we had Ian's surgical pre-op this morning at CHOP.  After running an hour behind, we were able to get into a room since Ian needed to eat and his blood sugar was dropping.  The Dr. was running two hours behind but fortunately we were able to move up a bit due to his situation.

It was decided from the previous upper GI series and radiographs that approximately 1/3rd of Ian's stomach is in his esophagus!  No wonder the kid never wants to eat or swallow!!  The vomiting and retching now is definitely due to reflux and not dumping syndrome or osmolarity issues.

Dr. Blinman informed us that this is a much more complicated surgery than the initial one.  He needs to try and use the same incisions, but may need new ones because of scar tissue.  He is also going to try and preserve Ian's G Tube site because it is working well and healed wonderfully.

Once in, the surgeon will need to repair some of the dissection that may have been done before.  Some surgeons are a little more "scalpel happy" than others.  Sometimes the dissection is done to make the surgery "easier."  Dr. Blinman will repair the damage done, if any.

After that, he will need to cut through all of the scar tissue that has formed from the prior surgery in order to "UNDO" everything from before.  He will need to start from scratch in order to eliminate the hernia.  This takes most of the time.

Dr. Blinman said that after he has done this, he can begin again.  This time, Ian will have a Toupet wrap, which is a 3/4 wrap.  This type of fundoplication brings the posterior part of the top of the stomach around the back of the esophagus into the front.  It is then secured to the esophagus itself, leaving 1/4th of the esophagus open with no stomach attached.

This wrap allows enough "tightness" that he will be unable to reflux through it, but allows 1/4th of the throat open to allow for expansion when the *real* need to vomit occurs.

The surgery will take about 4 hours and the efficacy of the Toupet wrap the second time around is the same as if done the first time around.  They have the same success rate... which is very reassuring because most wraps decrease in success as they are repeated, or repaired.

We will probably be in the hospital for about 4 days, depending on how the feeding routine goes.  After the surgery, Ian's late dumping syndrome, or reactive hypoglycemia, may disappear.  They will begin from scratch with evaluating what he can tolerate with feedings and what his system needs.

The time has come for this repair because over the last 4 weeks, Ian has vomited over 20 times.  The vomiting comes during feedings or right after, signaling a reflux vomit as opposed to a hypoglycemia vomit.  It is sad that we can not only distinguish between spit-ups, vomits, and projectile vomits..... but now we can also classify them!!

The surgeon at CHOP that will be doing the surgery does all of the reflux surgeries here and runs the clinic for these types of kids.  He is wonderful and I wish we could have found him before hitting bottom last fall.  We are glad to have him heading our team now.

Tomorrow we visit with Endocrinology about growth.  Ian has not grown or gained weight in over three months.  He is now off his growth curve, even for his adjusted age.... 30 inches and 22 pounds.  He has even lost a little weight.  They had backed down on his calories to make him hungrier in hopes that he would eat more, but he didn't.  Between the cut backs and the vomiting, they were not surprised about the plateau.  We will evaluate for hormonal treatment or other options tomorrow, and most likely after the surgery.

The surgery is scheduled for Monday, July 30th.  It is not considered emergency surgery and that was the next available opening.  In the meantime, we will keep Ian's feeding hourly rates low and do the best we can to keep what we feed him in his belly.  I don't know what feeding therapy will be in the meantime, but we will assess that next week.

Thank you everyone for your prayers, thoughts, and concerns for Ian.  Having such a large and loving support group of friends, family, and FB lovers means more to our family than I could ever express.  I will post more as we get more information.