Pictures of Our Cruise

Our Cruise to Mexcio in Pictures

Our Three Little Wonders Getting Ready for a Night Out on the Cruise!

Getting a haircut on the Crusie! Gotta look handsome for the ladies!

Hello Ladies!

Tyler and Caleb Munching on some SUSHI

Daddy and Carter at Dinner

Mmmmmm, I like Jucie Boxes!

                                                              Strawberries. Thanks Dad!

                                                    Look, I can do it myself! Sweet Potatoes.

What's for dessert? Why, a packet of sugar, of course!

Ooooooo, more sugar!

We had a great time!

Our New Home

Lucile Packard Children’s Hospital, our new home.  It has been almost a year since Carter’s reaction to soy led us into this FPIES maze. He is now 22 months old. We have seen so many doctors and Carter has endured so much on the search for some answers.  Yesterday we had our appointment with Dr. N, who specializes in FPIES. It was our last real hope to find a treating physician to have on Carter’s team.  We left our appointment yesterday with an actual FPIES diagnosis that is in his medical chart!! It has taken so long to find someone who can really help us through this maze, but it has been worth it all!

Our new hero, Dr. N, listened intently as I told Carter’s story yet again. She never once doubted my words; instead she reaffirmed everything I had seen. When I told her about his reactions to meat due to the animal feed, she readily agreed due to the severity of his reactions and even understood the difficulty in finding soy free meats. When I told her about the respiratory distress he gets when exposed to soy, she actually believed me. At every turn, I waited for the “Well that’s very unlikely” or “I’m sure you were seeing something else” or “Those symptoms must be due to something else” but she never uttered a single word of doubt. And for the first time since this whole ordeal began, I actually had a doctor commend me on what a great job I have done to keep Carter healthy, thriving and growing.

It seems all the hard work has paid off. We now have a plan: No new food trails at all (less stress for me, trying to figure out what to try to feed him next) We will do an in hospital food trail in 8 months when Carter is around 30 months old. It will be with a food that he reacted to, but not one of his violent reactions. She said that by 30 months, most kids make a turn and begin handling proteins better. She is a little concerned that this may not be the case for Carter since he has had reactions to very low protein foods such as oranges and honeydew melon.  We are to update her weekly on his overall status and we have been given both her e-mail and cell phone number.  So for now we try to find a way to get him to drink the elemental formula (we got samples too) and we will see her again in a month.

She said that she has 10 FPIES patients and the other hospital she works with, Mount. Sinai, has 18. It is a rare chronic illness, but now I feel like there is someone standing over me, holding a huge flashlight and illuminating this maze so that we can find our way out.

What did I do today?

I found this poem today and knew I had to share it with you! This for all of us who work tirelessly for our children and our families, sometimes with little to show at the end of the day. A big hug especially to all those cloth diapering mommas!!

What Did I Do Today?

                                                                

Today I left some dishes dirty

The bed got made around 3:30

The diapers soaked a little longer

The odor grew a little stronger

The crumbs I spilled the day before

Are staring at me from the floor

The fingerprints there on the wall

                                                   Will likely be there still next fall

The dirty streaks on those windowpanes

Will still be there next time it rains

Shame on you, you sit and say,

Just what did you do all day?

I held a baby till he slept

I held a toddler while he wept

I played a game of hide and seek

I squeezed a toy so it would squeak

I pulled a wagon, sang a song

Taught a child right from wrong

What did I do this whole day through?

Not much that shows , I guess that’s true

Unless you think that what I’ve done

Might be important to someone

With deep blue eyes and soft blonde hair

If that’s true, I’ve done my share.

~Author Unknown