Functional Feeding Program Begins!

We arrived in Pittsburgh around 2:30 pm on Sunday, got checked into the Ronald McDonald House, and spent almost 2 hours trekking to and from the car (in a parking garage) with all of our belongings.    We made a quick trip to the grocery store to buy some cold items that we couldn't transport.  By dinnertime, I was exhausted, and G was fired up and ready to run around.



I need to take a moment to say how amazing Ronald McDonald House Charities are.  These houses are God-sends to families from all over the world, when they are fighting for their child's life, and really don't have the gumption to deal with anything else.  This particular "house" is actually a few floors of a high-rise that's connected to the Children's Hospital of Pittsburgh.  There is a community kitchen and dining area fully stocked with pantry items like cereal, soup, snacks, etc.  This house also has a large living room area with tons of books, a play area with dress up items and toys for kids, computers, iPads, a TV and comfortable seating.  There is a large laundry room with tons of washers and dryers for you to use (for FREE!), along with bleach and detergent.  Believe me when I tell you, that they have thought of every single thing.  (Did I mention that if a family is unable to pay the $15/night rate, they are not turned away?  This is ah.maz.ing.)  Next time you pull through a McDonald's, please consider dropping your change into the collection box for the Ronald McDonald Houses (more on how to help later!).  I am guaranteeing you there are many, many families out there thanking you for it, including ours.  Here's a few pictures of our "room" (which isn't a room at all, but rather an apartment):

Half of the Kitchen (there's a refrigerator and microwave on the other side)

Bedroom

Day One:  We met all G's therapists, Miss Patty (speech and language pathologist), Miss Shelly (occupational therapist), and Miss Heather (psychologist).  These therapists will be sticking with us throughout the whole program.  For OT on day one, Greyson got to play in the gym to work on his spatial relationship issues (he is a "clumsy" kid, and falls often, knocks into things, wobbly when walking, etc.).  He also dug into a sensory bin filled with dry noodles and found toys animals with a spoon.  His favorite was the "shickee!" (chicken).  For speech therapy he played with some beefaroni with spoons.  He had issues when the sauce touched his skin, but that's part of what we are working to get him through.  Both therapists use a ton of positive praise and positive redirection, and he seems to be responding very well to them so far.

We also have a decent amount of down time during the day, and Greyson gets to play in a waiting room with some other kids.  There is also an awesome playground and a therapeutic garden where we've been eating my lunch so he can get outside for a little.  He's very tired by his last session at 2, and has been dragging a bit for it.  By the time we got in the car, he was out within a few minutes.  

Day Two:  For OT, Greyson did some exercise ball stabilization play, rode a bike through the hallways, played in water, and played in dry noodles again.  For speech, he took water off of a spoon (which is a huge deal, spoons are not his thing).  This took a lot of redirection with toys, playing with the water first, etc.  He also played with some goldfish crackers, nibbled on a tail, and "got his mouth ready" for eating with a brush.  

Lots of people have asked me why he needs to see a behavioral psychologist.  These sessions will not be for behavior problems, but rather for setting up a mealtime routine and setting expectations.  its honestly mostly going to be for me to learn how to react to certain situations that may arise as we are continuing therapy at home.  His psychologist got some more information from me regarding his behaviors during eating and what I'd like to see from him, and she encourages planned ignoring of certain mealtime behaviors like avoidance, throwing food or utensils, etc.  I'm anxious to learn from her how to speak during mealtimes, as this is one of my issues.  I have a problem asking Greyson questions instead of using one word commands (example: "would you like to take a bite?" Should really just be "bite", so there's no room for him to respond with "no!".  It is going to take a lot of work on my part to get used to that, as its just natural for a mom to ask her child questions.  

We are very tired by 2:30, and ready to get back to the house to relax a little bit.  We eat dinner in the community kitchen with the "fishies" and then head to the living room to play or back to the room to get some things done.  We are also doing one "therapy" session each evening of our own.

Pure Exhaustion:  Greyson wouldn't wake up for me this morning.

Oxygen update:  Greyson has been off of oxygen full time since July 22, and was doing very well for about 2.5 weeks when he began retching more.  He began throwing up a few days ago, and it progressed to about 5 times a day yesterday, so we made the decision to put his oxygen back on.  He hasn't thrown up at all today, which is a good thing when trying to get him to eat orally.  We will try again some other time to get him off of the oxygen, as right now just wasn't the right time.

Here's how you can help the Ronald McDonald House very easily:

-collect aluminum can tabs and drop them off at a collection center (possibly a local McDonald's, school, church, etc.)

-collect glossy paper from magazines, newspaper inserts, etc.  and drop off at a collection center

-donate pantry goods, toiletries, and/or paper products to a local house (many times the house has a wish list on their website!)  Here is the Amazon wish list for the Ronald McDonald House of Pittsburgh where we are staying.  

-volunteer at the closest Ronald McDonald House (cook dinners for the families, do an activity or craft with the kids, etc.)

-donate money or hold a fundraiser to help this wonderful cause

Please enjoy this wonderful video of Greyson and I doing our "first" therapy session where Greyson is "eating" water off of a spoon!