It's been a whole month since our last update. I finally have a free moment to catch everyone up on things.
Matthew's last day of third grade was yesterday. He is officially a fourth grader now :) I am also off for the summer as of this afternoon. :) Woo Hoo .Matthew is pretty happy to be home for summer break, although he did say he would miss some of his friends. He is not at all upset that he doesn't have to get up and get dressed every morning. He loves to lounge around in his undies :)
This past month we have been busy trying to schedule his summer appointments in Boston. We are still in limbo with a new GI doctor . We waited over 6 weeks for his PACT team to set Matthew up with a new GI doctor. After the last team meeting was cancelled due to his GI not being able to attend, we decided that we can no longer depend on him for Matthew's care. This follow-up meeting never was rescheduled , nor has Dr. R attempted to contact us by phone or email to check on Matthew in over two months. This is after this same Dr. told us that we were running out of time with Matthew if he doesn't immediately improve his nutritional status. His social worker from the PACT team finally told us that she can not find a single doctor at Children's who will take over Matthew's GI care from Dr. R . They claim that they don't want to step on his toes. So basically, Matthew has had to wait( undernourished and hungry) with no GI care plan while we search for a doctor who will see him. Terry and I were beyond frustrated, so we contacted his Mito Dr. at Tufts to see if he had a GI recommendation there. He suggested a Dr at Mass General and sent over some notes on Matthew. This doctor was able to fit us in the same week we will be in Boston in July for other appointments. We have our fingers and toes crossed that he will be able to help.
Matthew has a few things in mind that he would like to do this summer. He has a small list of his to do's:
1. See the Glengarry Bhoys play and dance to every song.
2. Go to Valcour island with Nichole and Ava to explore and search for treasures.
3. See his friends in Boston and go to Hilliards Candy shop to get Rose Mints.
4. See Kacie and Terry at warped tour
5. Write some new songs. (He wrote his friend Lily the cutest love song and he is super proud of it)