Coming Home

The end of our (possibly first round) intensive feeding therapy went really well.  Shane came Thursday evening so that he could meet Greyson's therapists and see them in action.  We were nervous that throwing Shane into the mix was going to throw Greyson off of his game, but it totally didn't.  He showed off and did really well on his last day.

We got very specific instructions from his therapists about how to continue his progress at home.  Both of us are aware that there may be a "transition phase" and Greyson may back track on his progress a bit, and/or revert to using some of his problem behaviors during mealtimes.  While this scares me, I am actually leaving the program feeling confident that I know how to handle these issues now.

Weekend Break: The Pittsburgh Zoo

After our successful week, we were so excited to have daddy come visit us, and he brought along Mamaw, Papaw, and Aunt Lenae too!  We packed up and went to the Pittsburgh Zoo on Saturday.  Here's a photo journal of our day.

Snow Leopard

Mealtime Challenges

The past two days have presented themselves with some challenging behaviors during mealtime, as well as some challenges for myself as a mother.

Monday morning, we decided to try having Greyson's speech meal with me out of the room to help minimize the poor behaviors that were developing.  He had become accustomed to me always being right there, which meant that as soon as he was uncomfortable, he was reaching for me as a way to avoid the situation.  Wile I was ignoring him, it was still interfering with his sessions and progress, so this was the next step.  Unfortunately, this had the opposite affect than was desired.  Greyson immediately started crying, reaching and pulling towards the door, refused to even sit in the high chair, and didn't stop for the entire 20 minutes that Ms. Patty tried to distract him.  She stayed very warm and calm throughout this, and continued trying to play with him while holding him and distracting with toys.  None of it worked, and after 20 minutes, she allowed the door to come open and for us to hug.  I was able to watch everything transpire through a double mirror, and listen with headphones (although he was crying so hard I didn't need them).  As mothers, our first instinct is to protect our children when they are feeling threatened or scared, and to comfort them when they are upset.  That's what moms do.  I'm not even able to describe what it is like to sit on the opposite side of a door and have to watch your child be in so much distress, and not be able to do anything about it.  There was a purpose to this madness, and I understand that, but it did not make it one bit easier.  I cried for him while he cried for me.

Small Successes

Most people find it very difficult to understand when a child won't eat orally.  "He's just going to wake up and do it one day" is something that I hear all of the time, and that's simply not the case.  It's going to take a lot of hard work and consistency on our part and his part in order to see a difference in his eating skills.

We had a pretty good day in therapy, and while both of us are dog tired, we are celebrating a few successes today.  Greyson took 30 mL (one ounce) of water from a spoon today.  He also took over 30 bites of Goldfish crackers!  Our "homework" tonight was to try another session with the Goldfish.

This video is a bit lengthy, but you can see how frustrating (for the both of us) mealtime can be.  You can also see that, yes, in fact, some children refuse to eat orally.  I wanted to give up right away during this session, but continued, and you can see the reward at the very end :)  Notice Greyson's mouth when we get the book out-his mouth begins to chew even though he's not eating.

The Functional Feeding Program at the Children's Institute of Pittsburgh

It's been a long, crazy summer, but we're finally getting ready to leave for the Functional Feeding Program at the Children's Institute of Pittsburgh.  We recently got our schedule for each day of the week, and when they say it's intensive, they aren't kidding!

9:30 am-10:30 am:  Speech Meal and Nutrition session
10:00 am-11:00 am:  Break for G's Bolus Feed
11:00 am-11:30 am:  Occupational Therapy session
11:30 am-12:00 pm:  Behavioral Psychology Therapy session
12:00 pm-1:30 pm:  Break for my lunch, play, and/or rest
1:30 pm-2:00 pm:  Speech Meal session
2:00 pm-2:30 pm:  Occupational Therapy session

We are hoping to have a room available to us at the Ronald McDonald House, but there is a possibility that there is not.  If we are lucky enough to get a room, it will be great, because the RMH has play rooms, books, toys, and nightly activities that we can keep ourselves busy doing when we are finished our sessions for the day.  I'm sure we may both need a nap before partaking in evening activities, though ;)

I will be keeping you all posted on our progress throughout our time there!