Halloween Cookies

We spent today making Halloween cookies, and because of the HFI, we used dextrose instead of sugar. I am not a fan of the sugar cookie, being more of a chocolate chip gal myself. But, the dextrose experiment was a success... the cookies were good. We even made a cream cheese frosting that Luke LOVED, and was as good as any with "real" sugar.

Climb Every Mountain...

He can scale the fireplace with a leap and a bound!

He can climb the trundle and up to Luke's bed without taking a breath!

He mounts boxes or cushions without a second thought...

He's Super Natey!!!

My Pacifist

There is a bad, bad boy on Luke's soccer team. He pushes and shoves maliciously, his own team members, for NO reason. He is a mean bully, and his parents just sit on the sideline while he runs amok on the soccer field, flailing his bad boy elbows at anyone in his path.

After Luke was pushed down by him for the third time today, I told Luke (it was the quarter folks, I didn't interrupt the game), "The next time that boy pushes you, you tell him to stop it!"

Luke looked at me, took a step back, and said, "Or I could just ignore it , Mom."

"Well, that's a good idea, too."

Branches

As Luke was grabbing onto my face, he said, "Mommy, I'm climbing your branches!"



I winced, and not from the pain of him tugging on my forehead, "Are you talking about my wrinkles?"



"Yep. They look like branches."



Oh, great.

The Bat

Look what we did with our pumpkin- and it won't rot any time soon! Luke is SOOO proud of this pumpkin. We got this idea from my favorite magazine, Family Fun. When we hit the patch with DaDa, we will make a mummy out of gauze. Can't wait!!

The Pumpkin Patch

Today we checked out the pumpkin patch at Irvine Regional Park. We had a great day with our Bumpa, running through the hay maze a gazillion times, riding the train, taking a hay ride, sticking our faces in all the cut out Halloween stands, picnicking, picking a pumpkin, and checking out the owls at the little zoo. Irvine Park rocks, and so does our Bumpa.

Tunnel of Love

I hope by this picture, you can see that baby has a funny sense of humor.
Nate LOVES his toy tunnel. He mushes his face up against the windows, and then pulls back, laughing hysterically. If the tunnel is folded up, he grabs the yellow ties and squeals until I pop the thing open. For a REALLY long time, he is content just laying in this thing, or crawling back and forth inside it, cracking himself up. Sometimes I play chase with him, or hide and seek, but he laughs just the same with or without my intervention.

HFI

Yesterday I took Luke to see a GI specialist at Cedars, and he has been diagnosed with Hereditary Fructose Intolerance (HFI). On Friday we will find out the results of his blood work and whether we will confirm the diagnosis with a liver biopsy or (hopefully) through genetic testing. This diagnosis is a bummer, but Scott and I keep reminding ourselves that it could be a whole lot worse.

What is HFI? It's a genetic metabolic disorder that recognizes any sugar in his system as poison. This includes naturally occurring sugars in all fruits and most vegetables, as well as refined sugar in bread, baked goods, candy, etc.. If he continued to eat sugars he would likely, later in life, have renal failure. For a long time, Luke's symptoms have included yellow poop, vomiting, lethargy, and anemia. Luke's liver is currently measuring two centimeters too large. The biggest concern at this point about his liver is that it is "exposed" , meaning that a car accident or rough blow to the abdomen could be deadly.

The only treatment for HFI is modified diet, and with this he can lead a long and COMPLETELY normal, long, healthy life. The other lifelong concern will be hypoglycemia. Once the diagnosis is confirmed he will likely need a "med alert" bracelet, due to the hypoglycemia and the fact that if something were to-God forbid - happen, Luke cannot have a normal IV in a hospital.

Luke has a natural dislike for most of the things that make him sick. But there will be many adjustments for us as a family, especially as he gets older. We have to plan out how we will teach him about the condition. He'll never really be able to have a birthday cake, or champagne at his wedding, or take 2 bucks to buy himself lunch at school. Every year, I'll have to buy his Halloween loot from him so he can go buy a toy instead. Eating at restaurants and at other people's houses will be hard for him too.

So what can he have? Pasta, butter, Bisquick, eggs, milk, cheese, spinach, celery, potato, rice, fish, steak... lots of things. But he can't have most sauces- no tomato, catsup, most salad dressings, no soy or teriyaki sauce, no carrots... Also, "sugar free" is not necessarily safe, as it contains sorbitol, which he also cannot have.

For concerned family members, I am including a link for you! And I will keep you posted as his results come in.

http://www.bu.edu/aldolase/HFI/