Sunday, August 14, 2011

Trip to Boston

I took Jaron to Boston for his yearly clinic visit Thursday and of course Justus(still nursing) went too. It wasn't the easist thing to do with 2 boys and a double stroller and overnight bags, without my husband but I did it. Chris had to stay here with Jacob and Jonah because school had already started. So even though the stoller and the boys and all our stuff weighed approx 100 lbs. I pushed it all over the airports and hospital and across the street to the hotel. And now I feel like I've been mountain climbing.

These pictures are not in order because I cannot get blogger to cooperate.
Peepaw picked us up at the airport and after TONS of traffic and a little confusion with the directions we finally made it to the hospital and to the radiology department just one minute before Jaron's appointment. He had a videoflouroscopy done. He had to talk in the xray machine and they also put barium in his nose and watched him talk again to see if it went into his nose.
  
That appointment only took 15 minutes so we had the rest of the night to recover from our plane ride and clinic was on Friday. So we stopped in the CVS inside the hospital for some snacks and went to McDonalds for a late lunch. Then went back to our room with Peepaw and Barbara to relax.

I gave the boys a bath and we ordered a PB&J with the crust cut off from room service at 7:30pm at night because Jaron was hungry. So we got to bed by 9:30 and woke up at 7am. I got a shower and we went down for our breakfast. Jaron's appointment wasn't until 1:30pm but we thought we might be able to get in early so I called with no answer so I packed up our stuff and we checked out of the hotel at 10:00. After a lot of walking with the 100 lb stroller back to the hospital in and out of elevators we made it to the clinic and they said the doctors don't arrive until 12:30 so we had some time to kill. So I took them to the "Family Center" to play with some toys and watch a movie. Then we had some lunch and headed back to the clinic by 12:30pm.

We saw the audiologist first back on the elevator (with the giant cadillac stroller) to the booth for his hearing test. He did great and his ears are perfect.

Back to the clinic and we were sent down to the basement for pictures.

Back to the clinic then we were taken to the dental department for xrays.

Then back to the clinic and we were taken back to see the speech pathologist and she had him talk a lot and asked lots of questions and said she determined he does NOT need the p-flap surgery to extend his palate. He also does not need any speech therapy either.

Then back out the waiting room and then we're called in to see Dr. Mulliken. Jaron's surgeon. He is so thorough and we love him. He is VERY pleased with Jaron's nose and the fact that it has not widened at all! He was bragging to his fellows about Jaron's cupid's bow (dip in his top lip). He meaured and made marks on Jaron with a green pen and Jaron just laid there perfectly still so cooperative. There were others in the room training and working with him. But I just wanted a picture of him working with Jaron. He's an artist really and Jaron is his masterpiece. He said Jaron's nose is the same width of an average white male without a cleft.

We talked about his new baby and how she is also 8 months like my son Justus. He said she sleeps through the night and when I asked him how does he like being a parent he said "it's interesting".

What was most exciting to hear is how great his scars are doing. Jaron's scars have not stretched at all. And it's because his premaxilla (front gums) are set back into his mouth a little. That is also why his nose has not widened. And the reason it's set back is because we started out wearing the NAM in atlanta and the doctor pushed his premaxilla back into his mouth sideways and after 17 weeks at NYU and the NAM could not turn it back straight. So we met Dr. Mulliken and the first thing he said was "he needs a premaxillary osteotomy" (straighten the front gums out). So he pushed other children's surgeries back to fit Jaron in at 8 months old to do that first surgery and closed his palate at the same time. And because of that Jaron's scars have not stretched as he has grown like most kids do. So Mulliken was very pleased to say the least. He told his fellow to send us down for some 3D pictures of Jaron puckering.

So back to the waiting room and I proceeded to nurse the fussy baby all the while watching the clock because my flight was at 6pm and was already 3:30 at this point. And just as he started nursing they came to get me for his 3D pictures so I asked him to push the stroller while I nursed and walked down there.

I asked him (Dr. David Kim-fellow) how long did he think Dr. Mulliken would be working and he said Mulliken told him about 6-8 more years. I told him to pay close attention because he is the best.

So we got the pictures and back to the waiting room and then we're called back by the dentist last doctor for the day. I made it clear my flight was at 6 so we hurried things along they measured his mouth and told me his next surgery is at 9 years old for the bone graft. Bone from his hip placed in his gums where the cleft was. And possible braces before then. I asked one of the nurses to call a cab for me and we ran down to the lobby to pick up the carseat and out the front door just as the cab pulled up. We made it to the airport and still had an hour to get dinner and get through security.

Thank God we made it home safely. My whole body is aching from all that walking while pushing the giant stroller but it was all worth it and I would do it all again if I had to.







The boys were watching out the window for our airplane to arrive. So anxious to get back home to their brothers and daddy.

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We spent some time in the Hospital's Family Center with tons of toys, books and movies. Jaron was feeding the dinosaurs.
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The captain let Jaron tryout the front seat!


This was taken on the way to Boston. He was so anxious to land after we had only been in the air 5 minutes. So we played some games to keep him occupied. The baby was keeping me plenty busy.
This neat thing is in the lobby of the children's hospital with balls falling and sliding up and down. The kids love it!
This is where they took the 3D pictures.