Josiah's 2nd annual team meeting

Warning...This post is more for me as I need a place to write this all down before it all slips away. Thank you to all of you who prayed for Josiah's meeting. My brain is fried, but I must do this now.

Today was Josiah's 2nd annual team meeting. Last year, we had someone watch the girls so we could both be at this marathon meeting. But this year we decided that I would just go. The day started out with Josiah waking up at 5:00a.m. - not for the meeting, just because. Well, I think he couldn't find his burp cloth! Since he was up so early, he fell asleep on the way to Speech. He did well there, but then fell asleep again on the way to Cedar Sinai. The parking lot was full, so I was told to try the parking across the street. That was blocked off with cones! Thankfully I found the secret way in. I went in wear the ambulances and trucks enter and rushed sleepy Josiah and all of our toys and snacks to his meeting.

When I woke him again the second time, he was SUPER cranky! Nothing I brought seemed to console him and the meeting hadn't even started, yet! This was NOT a good sign. Thankfully, I had brought a little farm and animals. I made the animals slide down his leg and onto his tummy with some sound effects, of course. This made him laugh! Aaaah. Finally. After 5 minutes of this, he came around. I was so relieved!

Josiah is now 24 pounds and 34 inches tall. This makes him in the 10-25% in weight and 50th% in height.
Dr. Newman - ENT came in first and discussed his coughing and throwing up issues with me. She looked him over and said his tubes look great and suggested we take him to see a GI specialist. Maybe his reflux is returning?

Next the oral surgeon and pediatric dentist came in and checked out his teeth. They said they looked great and that we should get his teeth checked out every 6 months starting March or April. We should brush his teeth morning and night.

Stacy - Speech therapist came in next and gave some suggestions for helping him round his lips more. Use a vibrating tool, tap his lips and around his mouth to stimulate his lips, help him pucker up his lips when we kiss him - do it in a playful way, whistles, McDonald's straws are better because they are bigger than the thin straws.

Dr. Graham - Genetist - Oh, I really like Dr. Graham. Funny side note. Tami, our coordinator asked if I needed to see Dr. Graham today. I guess because Josiah doesn't have any genetic issues. I said, "Yes." just because I really like Dr. Graham and I wanted his opinion on how Josiah is doing. =0) Noted many times how busy and active Josiah is. He just observed him for quite awhile, which I liked. He let him do his thing. He is very smart, but he is also gentle and playful. It is very rare to find all of these qualities in a doctor.
Some of Dr. Graham's comments:

• Josiah still has a slight head tilt towards the left
• Does he have a raspy voice?
• He believes his cleft lip and palate is an isolated incident - not related to anything else - he doesn't have any kind of syndrome
• Josiah still has a fistula in his palate
• He listened to his heart and lungs for quite a while - lungs were very clear and couldn't hear his heart murmur! Could it be gone?! This is the first time someone hasn't heard it. He did say it could be just him, though.
  
• Josiah is well fed and nourished
• Dr. Graham is honest - doesn't know why he is coughing and throwing up. He doesn't think that taking him to see a GI would help because it doesn't seem to be reflux related since it always follows a coughing spell - he said he would talk to the team about this
• He commented on how I have done all the right things in regards to his care over his coughing and throwing up - do you see why I like Dr Graham? =0)
• He would like to hear more speech from Josiah - he asked him a bunch of questions and Josiah did not respond until I asked him in Chinese. I was the translator.

Dr. Reinisch- plastic surgeon - He asked about his speech development. He explained to me that the back of the palate is the most important part. You need the palate to be closed in the back in order to block the air from coming out if you want to say words like "cookie" or "puppy." Josiah's fistula is right behind his top teeth. This doesn't affect his speech development so we don't need to worry about it. We will reeavluate how his nose grows at 4 or 5 years old. Best case scenario - if he continues to develop the way he is than we won't touch his nose or lips until 13-15 years old. It is better to wait until they are older so you don't have scar tissue to deal with. The fistula and gumline will be repaired around age 9. He can't form a complete seal because of his gumline hasn't been sealed yet. All kids with cleft lip and palates won't be able to form a complete seal because of this whether or not they have a fistula. This made me feel better.

Done and asleep for the third time today.
Little did he know he had a surprise waiting for him at home...

Ali and Sammie decorated Josiah's room with cars from Cars movie because they are his favorite! I thought it was so sweet. They wanted to surprise him and boy, did they surprise him! I wish I got his reaction on video. He pointed up and them and yelled, "CARS!" over and over again! He was so excited about them.