Archive for July, 2012

Hello there

Saturday, July 28th, 2012 by by

I know I’m terrible at posting.  We are trying to enjoy our Summer.  Kings Island, movie theaters, Cincinnati Zoo and whatever else we can find to do.  Doctor appointments and therapy visits round off our weeks.  We’ve seen Endocrine (nothing new, rediscussing GHT), Pulmonary (started a couple new meds, discussed BiPap and IVIG), Gastro (started draining the G port), Ortho (status quo), ophthalmology (eyes are worse/crossing so getting new glasses) and her special needs ped (who keeps everything running smoothly).

Ava’s appointment with Dr Kendall in Atlanta is next Tuesday.  I am so nervous about this.  She’s the Mitochondrial disease specialist that will be taking over care for Ava’s primary Mitochondrial disease.  We will be leaving Monday and staying in Atlanta for a few days.  Dr Kendall will come up with a plan of care and protocol letters for Ava.  Her specialists are all on board with this, and we are so grateful for that.  Ava has some great doctors.

Upcoming appointments are with Genetics, Neuro, Rehab, Endo, Cardio and possible immunology.

Of course, glucose is an issue.  We can’t keep her above 60 lately.  When she drops she has ZERO symptoms.   Imagine how I feel when my child’s blood sugar is 35 while she’s playing? Her body is used to it.  We now only treat when she’s below 45.  She’s lost some more weight so her feed rate was increased and her formula changed.

School will be starting in less than a month.  Ava was approved for (more…)

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Weekend Wrap-Up

Saturday, July 28th, 2012 by by

This weekend went by quickly.  Rob didn’t make it home until 7:30 in the morning on Saturday and had to leave this morning at 2 a.m., so part of me wonders if he was even here at all or if I imagined it.

I have to be honest, I was a little bummed out this weekend.  This separation between my husband and our family is starting to wear on me.  I am tired.  I am lonely. I am outnumbered.  Mentally?  I can’t even go there.  Our summer has felt like a struggle where I just pray to make it from one day to the next.  Sometimes in the morning I just lay there and wish I could make it stay 6:37 a.m. for a couple of hours so I could recover – or talk myself into feeling more positive about things – or just sleep.  It’s not like we’re not having fun or as if everything is horrible – it’s just that most days I feel like I’m slogging through Jell-o.

Anyway.  The weekend.

We had people over on Saturday and it was fun – just as I knew it would be.   It was an interesting mix of people I don’t usually socialize with outside the gym so I think that’s what made the afternoon even better.  I wisely invested in a sitter and she herded the combined 12 kids in and out of the pool, on and off the trampoline, in and out of the house…and probably stuck more than 45 straws into drink pouches, bless her heart.

That evening Hayden and Weston each spent the night at friends’ houses, so the next morning Rob and I decided to treat ourselves to breakfast as a family of 5.

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While we were there, Eliza introduced me to the CamWow app.  So weird! (more…)

Food Fun Friday – Pretzel Bark

Friday, July 27th, 2012 by by


I recently purchased some pretzels for a snack for the kids and myself. I was thinking about how I love chocolate covered pretzel rods. In fact, we even made some ourselves this past Christmas. This gave me the idea to make some pretzel bark. It is super simple to make and the kids just love helping out.
You will need:

  • Pretzels
  • White chocolate chips or candy melts
  • Sprinkles

That’s it! I decided to use both white chocolate chips and red candy melts since we love pink in this house. But you can just keep it white if you want something more traditional. I have a bunch of holiday sprinkles (more…)

Rainbow Fish Torn Paper Craft

Friday, July 27th, 2012 by by

It’s summer…which means heat, beaches, vacations…so we have been reading books and doing crafts that revolve around the ocean and it’s life!

This month we are loving The Rainbow Fish and have been doing some fun activities to go along with it. First up? A simple (but fun) torn-paper craft. I did this one with some clients and with both my children….ages 1.5 and 3.5.

What you will need

  • Scrap paper in a rainbow of colors
  • Construction paper
  • Aluminum foil
  • Glue
  • Scissors
  • Plastic bowl
  • Optional: Yarn/string and hole punch

What is targets

  • Fine motor (tearing and gluing)
  • Visual processing
  • Receptive and expressive language
  • Color ID

How To Make It

  • First step, Take your construction paper, fold it in half, and cut out a fish shape
  • Next, place the scrap paper and some aluminum foil in the center of the table and have your child(ren) (more…)
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5 Healthy Ways to Handle a Crying Child

Friday, July 27th, 2012 by by


We love our children and our little babies, but sometimes when they are crying, it’s just a hard knock life for us! There are a lot of ways to handle your children screaming, fussing, and crying, but some methods are definitely superior to others. Today’s article for Moms is about 5 ways that you can deal with your children’s crying- but not lose your cool.
1. When your baby or toddler stumbles and falls, don’t flip out.
Your chidlren will fall as learn to explore their world-it is going to happen- and if you gasp, sigh, or put a surprised expression on your face, your children will adopt the same attitude about their fall, and then they will begin to associate falling with fear and sadness. If, however, you keep your cool and even laugh or say silly things after a fall, your little one may fuss a little from the bump they caused themselves, but they won’t be afraid.

2. Don’t treat fussing like crying.
I’m sure that after a few months of caring for your child (more…)

Limits

Thursday, July 26th, 2012 by by


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“So, Mom? You’re saying it’s okay with you if I have these kazoos, you just don’t want me to play them?”

“Not all at the same time, no.”

“So one or maybe two or three at a time is okay?”

Thursday: DIY Homemade Twix Bars

Thursday, July 26th, 2012 by by

Are you ready to break your diet? Or planning to reward yourself for something? Then prepare your sweet-tooth for a treat.

Cookie (shortbread) Ingredients
*1 cup butter/margarine, softened (either by 15-20 seconds in the microwave or by being left out
until room temperature)
*3/4 cup powdered sugar
*1 Tbs vanilla
*2 1/2 cups flour

-Mix butter, sugar, and vanilla with an electric mixer until combined. Next, add 1/2 cup flour at a time until the mixture is dry and crumbly (and delicious- this is a good time to eat a piece of the dough… yum).
-Press the dough into a greased pan- you’ll want the dough to be about 1/2 inch thick. Next, poke the crust with fork.
-Bake at 350 for 15-20 minutes or until the outer edges are caramel brown and the middle is a golden brown.

While this is baking…. Make the caramel! (more…)

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In the Swim

Thursday, July 26th, 2012 by by


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“Dad, swim class today got out early because the pool got con-tam-in-ated again.”

“What happened this time?”

“Desmond barfed a mango yogurt.”

“Oh, no.”

“Yeah, I’m pretty sure it was mango.”


How to Get That Thing Out of Your Nose By Bob Rosenberg

Wednesday, July 25th, 2012 by by


If you’re on the couch and you accidentally put your hand under a cushion and then you accidentally pull out a piece of foam and then accidentally shove it really far up your nose, then you need to tell your mom. She’s going to make you go in the bathroom while she puts pepper under your nose to make you sneeze and then the foam doesn’t come out. Then your mom is going to try to get it out with one of those squeezey ball air-sucker things that are for baby snots and then the foam still won’t come out. Your nose starts to feel bad now. Your mom is going to drive you to see Dr. Bess and in the car your mom is going to talk about all of the places on your body that you shouldn’t shove things in.

Dr. Bess is going to look up your nose with a light and then she is going to try to get the thing with a thing but the foam isn’t going to come out. Then Dr. Bess is going to talk about all of the places on your body (more…)

Early Arrival Tips for Visiting Walt Disney World- Magic Kingdom

Wednesday, July 25th, 2012 by by

This weekend we went to Disney World again, but this time we began at Magic Kingdom before heading over to Epcot. Here are a few tips that I wanted to pass along that made our trip smoother. Note: These are things that work for my family when we get to the park first thing in the morning, NOT if we arrive in the afternoon.

  • Park at Epcot and take the monorail over to Magic Kingdom. Yes, you will have to exit the monorail from Epcot and board another at the transportation area for Magic Kingdom, and yes, you’ll have to get your bags searched twice, but it’s so much easier than getting on the tram with a bunch of people and then moving like a herd of cattle to the monorail, especially with a stroller! You can open your stroller right after exiting the tram at Epcot (or if you’re as early as we usually are, we bypass the tram since we’ve always parked close enough to walk to the entrance of the park), get your bags checked, and then head up to the monorail. We were the only ones who took the monorail when we went on Saturday, and we had a nice leisurely trip to the transportation area that takes you to Magic Kingdom. The best part of doing this, in my opinion, is that exiting the park later is a breeze! Epcot is a much easier park to leave from, both in terms of the parking lot design and ability to get back to the major highways.
  • On this day, it was so nice out, we ended up taking the ferry over to the entrance gates of Magic Kingdom, and the kids loved it! I highly suggest taking the ferry over because it’s usually less crowded than the monorail, and it takes the same amount of time. First thing in the morning they’re running a bunch of the boats, so waiting usually isn’t an issue. It’s a really pretty ride, and you can check out a few of the hotels along the way.

(more…)

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