Checkup in Pittsburgh

Last week Lukie had his annual checkup Pittsburgh. My mom and I took Luke this time and Mike stayed home with the boys. Things went really well. The doctors reviewed the test results from our testing in Texas. The results were better than they expected them to be. The doctors really want us to push his feeds and see how well he tolerates it. They also really want him to eat orally. Kids like him seem to do better is they eat orally. If he doesn't tolerate higher tube feeds and oral feeds in 6 months they would like to place him on status 2 transplant list (we are hoping we don't have go that route). The thing is Lukie doesn't eat much orally. He loves to play with food and may be try a few bites, then spit out his food. He is more interested in eating for the social reasons. So we also spent a day at the Children's Institute learning what to do to get him to eat. We do have a occupation therapist, but doesn't seem real helpful. We will now also be going to a children's rehab and doing things at home a couple of times a day to try to help Lukie how to eat.

Well in Pittsburgh we met a friend I met on Facebook. Matisse and her family moved to Pittsburgh from New Zealand for multi visceral transplant (stomach, pancreas, small bowel, and colon). Matisse is 9 1/2 and was born with Chronic Intestinal Pseudo Obstruction and story is similar to Luke's. Matisse and her mom are amazing. They have sacrificed so much to get their daughter what she needs. They have lived here for 4 years waiting for transplant and are still waiting to get her life saving organs. Matisse is such a sweet heart I fell in love with her and so did Lukie!

"Pseudo Buddies"

Lukie loves to Play with to kitchen's

Therapeutic too:)

Liam and Lukie in the hammock at Melissa's house

Lukie loved to play with his cousin's and got lots of loves!

I realized I didn't get any pictures with my sister Melissa. So I took this one at 4:00 in the morning at the airport. None of us got any sleep that night so we looked beautiful! I'm sure My mom and Melissa would enjoy me putting this picture on:)

Now that Luke is 2 I have to pay for him to have his own big boy seat!

Very Cute!

Facetime with boys!

Facetime with Da Da

So glad to be home with his "Boys"

Lukie singing happy birthday to Grandpa Fullmer from Pittsburgh!