time for a little Addy update...

Well, I realize it's been a VERY long time since our last update. Lots of things have happened, mostly all good things, and I didn't want to jinx any of it, so I've really hesitated posting about them.

We were finally able to get Addyson signed up for the Medicaid A&D Waiver, which enables us to received skilled nursing respite care for Addy. This means we'll get a set number of hours per week in which a skilled nurse will be here at our house to care for Addyson, giving Nick and I a bit of respite. We can use this time to get chores done, run errands, sleep, basically, so whatever things we need to get done. This is wonderful, especially in the winter (cold/flu season) when we don't like to take Addy out to run errands. I'm hoping to use the time to visit the library and work on some of my personal goals, unrelated to Addy. I think the extra socializati

on and structure will also be good for Addyson.

We were also able to get approval for Medicaid Disability, and since she qualifies for the A&D Waiver (above), the monthly spend down is $0. This means that we are able to have excellent health insurance for Addyson, which she desperately needs, for no out of pocket monthly fees or co-pays. Honestly, I had been working on this since May and finally got all approved for the start of December.

We've been cleared by the pulmonologist to discontinue daily breathing treatments, and just keep the script and nebulizer for an as-needed basis, when she is sick, which, thank goodness is not very often (thanks to our persistance with hand washing and little to no exposure!). She will continue taking the Singular, which is given through her gtube for issues with inflamation in the lungs.

The gastroenterologist suggested we use a medicine called Ondansetron to control nausea, in hopes to reduce the vomiting. It's primarily used in cancer patients, those who become sick from the radiation/chemo. It's been a miracle drug for Addy and has really assisted in controlling her vomiting. As most of you know, it was not uncommon for her to vomit multiple times a day, and now... the vomiting is once every few weeks!!!! We will continue to also give Addy the Omeprazole (Prilosec) to help with the GERD (reflux disease) that she has issues with in hopes to keep the acid from destroying her esophagus.

A decongestant (Dallergy) is also given to Addy daily in attempt to keep inflamation and congestion under control, since that tends to be a trigger to her lung and vomiting issues. Just last week, the developmental pediatrician wrote a script for a different decongestant that he'd like us to subsitute. It's also known to stimulate hunger, which is something we wonder if Addy has the ability to feel or understand.

Because of the way Addy's body is fed, her digestive system needs some assistance, so she continues her daily dose of Miralax. (I'm sure as she gets older she'll hate that I share this info with the world!!!)

But, there is lots of great news!!!

We've been working on oral feedings more and more, as she's showing some interest. In the past few months, we've been able to work on "controlled feedings" on the weekends. This means that for two days a week, we offer oral feedings only and use water through the gtube, just to keep her hydrated. She still gets her typical night time feeding, so she is getting some calories. The idea behind this is to encourage hunger so that she will have the desire to eat... it's easy for all of us to eat when we are hungry, but when you've been fed through a tube on a 4 hour schedule all your life, it's hard to understand the link between your belly growling and needing to put food into it. It's been working fairly well. It's still a slow, long process, but we've been encouraged by her progress. While it's hit and miss, we've watched her eat 1/2 of a pudding cup or 1/2 of a yogurt cup, a few tablespoons full of macaroni & cheese, 30+ pieces of dry cereal (Dora Cereal, Froot Loops, and Honey Kix are her favorites!), and a scoop of icecream. She has also eaten vegetable soup, cheetos, scrambled eggs, shredded cheese, and a whole lot of other things. Basically, if she asks for it, we let her try it! Lots of food still gets spit out after she's chewed or sucked on it for a while, so we have to just keep trying and encouraging her.

She weighed 24 1/2 lbs at her appointment last week, and she's still a shorty, but her height to weight is proportionate, so we're not worried about her size. Most of her pants are 18 month in size, while her shirts are 2T, they have to be long enough to cover that g-tube and big belly of hers! :)

We had a little incident this weekend, and Addy fell out of her crib. She's OK, but it really scared me. So, we've converted her crib into a toddler day bed. It's low enough to the ground that if she rolls out of bed, it's not a big deal, and I've put a long pillow on the floor to help that too. So, she's in a BIG GIRL BED!!! I have to really make sure she understands that she can't just get up and walk out of bed, since she's hooked up to her night time feeding pump all night, so I'm sure it will take some getting used to. We've had 2 nights in the new bed, and she's shown a lot of promise!

And of course, now that she's in a Big Girl Bed, she's really shocked us and has been asking to sit on the Big Girl Potty! We've been talking about it and asking her to sit on it for months now, but after the first night in the Big Girl Bed, she asked to sit on the Potty! She sat a few times during that day, and we were so proud of her. Today, she actually had success on the potty, so it's been a HUGE weekend for Addy!!! We couldn't be more proud of her!

She's talking up a storm, and although most people don't have a clue what she's saying, it's mainly because she talks so fast. GUILTY, both Nick and I are so guilty of that. We have to watch ourselves and encourage her to slow down so we can understand her. Like most 2 year olds, a lot of understanding comes from the context of the discussion. She's such a funny girl and we laugh a lot at the things she comes up with!

The therapy that she recieves (Speech, Occupational, Nutritional, and Psychological) through First Steps will no longer be available to her after her 3rd birthday in April, so we are meeting with the local school system to determine if she will qualify for developmental preschool, which would provide continued therapy services. We are really torn and aprehensive about this next step in her life, but we know she could really benefit from the structure and socaial aspect that the preschool would provide. We are unsure of what direction we will take if she does not qualify for developmental preschool, so we are researching our options.

Mark your calendars, the March of Dimes walk falls on Addy's birthday this year, Sunday, April 25th. We will be walking as Team Addyson again and collecting donations as well. Please let me know if you are interested in being a part of our team or making a donation! Here's the link to our Team Website. You can sign up to be a part of the team HERE or make a donation HERE. It's a great way to celebrate Addy's life and help others!

Ok, now I'm going to work on getting some new pictures up here in the next week or so, so stay tuned!!!

Savory Crescent Chicken Squares

Ok, this is one of my favorite recipes. Since I only make slight changes to it, I'm posting the link. I first had this at my friend, Amber's house. It's a yummy one

Savory Crescent Chicken Squares

Ok, here are my suggestions for alterations to the recipe:
double it, trust me!
don't use the chives/onions
don't use the pimentos
add in one pkt of dry ranch dressing (if you double, otherwise just 1/2 pkt)

This can be made into a decorative ring instead of packets if you double the recipe.

Easy Enchiladas

Easy Enchiladas

Recipe adapted from Weight Watchers New Complete Cookbook

8 servings

4 points per serving

2 t canola oil (I don't use this, just a nonstick skillet with some nonstick cooking spray)

1 lb ground turkey

2 red bell peppers, seeded and chopped

¼ c chopped onion

2 t chili powder

1 t ground cumin

one can diced tomatoes

one can black beans, rinsed and drained

one can pinto beans, rinsed and drained

¼ t black pepper

8 taco sized flour tortillas

1 c shredded reduced-fat cheese

1. Preheat oven to 350; spray a 9x13 with nonstick cooking spray. In a large nonstick skillet, heat the oil. Saute the turkey, peppers, and onion, stirring frequently to break up the turkey, until browned, 6-8 minutes. Add the chili powder and cumin; cook, stirring, 1 minute. Stir in the tomatoes, beans, and black pepper. Reduce heat and simmer 5 minutes.
2. Place the tortillas on a work surface, spoon the turkey mixture down the center of the tortillas, then roll them into cylinders. Place, seam-side down, in the baking dish; sprinkle with the cheese. Bake until heated through and the cheese is melted, 30-35 minutes. Let stand 10 minutes before serving.

We don’t usually serve anything with this, except some fat free sour cream. It’s very filling and somewhat spicy, so adjust to your tastes. If you have too much filling, it’s great the next day over a baked potato!

Beef and Vegetable Soup

Beef and Vegetable Soup

Recipe adapted from Weight Watchers Cook It Quick
8 servings
3 points per serving

1 t olive oil (I don’t use this because I use a nonstick pan, sprayed with cooking spray)
2 medium onions, chopped
4 stalks celery, chopped
4 carrots, peeled and chopped
20 oz boneless round steak, about ½ inch slice, cut into ½ inch cubes
2 c low sodium beef broth (or 2 bullion cubes dissolved in 2 c water)
2 cans green beans, drained (or two cups frozen, thawed)
2 cans corn, drained (or two cups frozen, thawed)
6 scallions, sliced (I do not add these)
½ c chopped flat-leaf parsley (I do not add these)
½ t freshly ground pepper
6 c water
2 cans diced tomatoes

Heat the oil in a soup pot, then add the onion, celery, carrots, and beef. Saute until the beef is browned. Add the broth, beans, corn, scallions, parsley, pepper, water and tomatoes and bring to a boil. Reduce the heat and simmer, stirring occasionally, until the vegetables are tender.

I serve this with Sweet Brown Bread.

Sweet Brown Bread

Sweet Brown Bread
Recipe adapted from Weight Watchers New Complete Cookbook

12 servings

1 point per serving

1 ¼ cups whole wheat flour

1 t baking powder

1 t grated orange or lemon zest (I omit if I do not have on hand)

½ t baking soda

½ t cinnamon

1/8 t salt

½ c low fat buttermilk (or substitute ½ c skim milk with 1 t white vinegar)

1 egg

3 T molasses

2 T packed dark brown sugar

1. Preheat the oven to 375; spray an 8x4 loaf pan with nonstick cooking spray.
2. In a medium bowl, combine the flour, baking powder, orange zest, baking soda, cinnamon, and salt. In another bowl, combine the buttermilk, egg, molasses, and brown sugar. Pour over the flour mixture, mixing quickly to blend (do not overmix).
3. Transfer to the pan. Bake until a toothpick inserted in the center comes out clean, about 35-40 minutes. Cool completely on a rack.

We like to serve this dense bread with soups to complete a meal. Add a little jam and it's a great snack.

Southern Oven "Fried" Chicken

Southern Oven "Fried" Chicken

Recipe adapted from Weight Watchers New Complete Cookbook
4 servings

5 points per serving

½ c fat-free buttermilk (or substitute ½ c skim milk and 1 t white vinegar)

2-3 drops hot red pepper sauce

½ c cornflakes, crushed

3 T all-purpose flour

¼ t salt

¼ t pepper

1 ½ lbs boneless, skinless, chicken breasts

4 t canola oil (we just use cooking spray)

1. Preheat the oven to 400; spray a large baking sheet with nonstick cooking spray.
2. In a large shallow bowl, combine the buttermilk and pepper sauce. On a sheet of wax paper, combine the cornflake crumbs, flour, salt and pepper. Dip the chicken in the buttermilk, then dredge in the cornflake mixture, coating completely.
3. Place the chicken on the baking sheet; drizzle with the oil (or spray with cooking spray). Bake 30 minutes, turn the chicken over. Bake until cooked through, 15-20 mintues longer. (You may not need this much time if your chicken pieces are smaller/thinner).

We typically serve this with Sweet Potato Suprise and some green beans.

Sweet Potato Suprise

Sweet Potato Surprise

Recipe adapted from Betty Crocker's Low-fat, Low-cholesterol cooking today
6 servings
2 points per serving

1 18 oz can of sweet potatoes, drained
1 T packed brown sugar
6 large marshmallows
1 T margarine, melted
1/3 c cornflakes, crushed

1. Heat oven to 450; spray 8x8 pan with nonstick cooking spray. Mash (really well) sweet potatoes and brown sugar. Shape 1/3 c potato mixture around each marshmallow into a ball.
2. Brush 1 sweet potato ball at a time with margarine; roll in cornflake crumbs to coat. Place in pan. Bake uncovered 8-10 minutes or until coating is light brown.

This is typically served at my house with Southern Oven "Fried" Chicken and some green beans.