Monday, June 28, 2010

Our Trip to Boston...

..well it was not without problems but I won't get into those details and give the devil any credit. We arrived at the hotel wed. night and got settled in for bed. Thursday we woke up and ate dunkin donuts and oatmeal for the boys for breakfast. Then we went downstairs to meet the babysitters provided and get the children settled in. Then Chris and I went up to the 16th floor to listen to some doctors speak about cleft lip and palate. They started at birth and went up through the teenage years talking all about dental issues and surgeries to come. I learned a lot about what to expect in Jaron's future and took 2 pages of notes. The other speakers didn't really pertain to Jaron so we relaxed the rest of the day. Chris napped with Jonah and I took Jaron and Jacob to the pool. We ordered pizza for dinner and tried to get to bed earlier that night.

The hotel garden...a place for the boys to run around and play.
The tunnel to get to the pool.
Friday breakfast was provided and then they got huge buses to take everyone (hundreds) to the New England Aquarium. We all wore matching shirts and this is Jaron with his friend Seth.
We got a cab back to the hotel and then left again on a hotel shuttle to the Children's Hospital. We got their a little early so we shopped in the CVS inside the hospital. Stocking up with snacks and drinks for the hotel room and a new toy for the boys.
Jaron's appointment with the doctors was at 2pm so we headed over to the clinic. The waiting room is nice and big with toy cars Jonah rode in and a huge chalk board and books and other toys too. Jacob watched tv and played with his new hangman game. Chris waited out their with them while I took Jaron back to see the speech specialist and then the feeding specialist. They were very thorough and didn't rush. I came prepared with reports from all Jaron's local doctors and they were happy to see those.

Overall Jaron's speech is not perfect but he is doing ok. Some air is escaping out his nose because his soft palate is a little weak. It might be too short or just not closing all the way when he speaks. They want to do a speech study next year. (x-ray while he talks) He might need a p-flap surgery next year. And they watched him eat a few snacks and said he doesn't have great chewing skills. He might be forgetting the food is in there or maybe he can't feel it all. We are going to start back Occupational Therapy ASAP to try to fix this problem. I need to find an excellent therapist who specializes in this area. He may even have some nerve damage in his mouth. He doesn't use his tongue very well either. They said he is doing a tongue thrust but it is mostly a problem for teeth not swallowing.
Then the put us in a room with his plastic surgeon Dr. John B. Mulliken and the dentist Dr. Bruun and about 15 doctors in training. We sat at the front, Jaron and I, and it was a little overwhelming at first but if you know me....I'm not shy so I got used to it. One came up with a flashlight and shined in Jaron's mouth first looking at his teeth. Noting his overbite and how is teeth touch in the back as well. His back teeth seem to be aligned pretty well right now and it looks like he may only need a palate expander and may not the broken jaw surgery. Nothing is for sure right now. We are just waiting for his adult teeth to come in and see what they look like and where they are located.

Dr. Mulliken (plastic surgeon) was very pleased with his scars and said he doesn't anticipate a lip or nose revision. I asked will Jaron's nose get any flatter and he said the nostrils shouldn't widen and the tip is flat but shouldn't get any worse. He will need his deviated septum corrected but not until age 18. One lady looked up close and said I can't even see any scars. (THAT WAS AWESOME) Dr. Mulliken said to me "you're the one who keeps sending me all these patients." and I said "Yeah I've sent a few your way" :-) He is so nice and took us in another room with his personal camera to take some pictures of Jaron. He asked about my pregnancy and told me to make sure they do the ultrasound right. I asked him should I keep sending him patients or is he retiring? He said "You know I just got married, I'm a new man!" So he took another close look at Jaron's lip and nose and said how good it looked. He said his lip is a little flat but once he gets his teeth in his lip will stick out more normally. Right now Jaron doesn't have his 4 front teeth (2 missing incisors and 2 extracted front teeth.) So next surgery could possibly be next summer for p-flap (palate extension) and then dental surgery age 8 or 9.

Overall I am very happy with our visit to the hospital. After 3 hours of doctors and waiting for Jacob & Jonah we took the boys down to the hospital playground and then got a cab back to the hotel. CCA kids provided dinner in the hotel ballroom. And they had a magician there for the kids. THEY LOVED IT!!!

Jaron's friend Daniel and his family.

Saturday breakfast was provided and they planned a pool party for all the kids 11am-4pm Lunch was provided as well. Chris's dad came to visit since he lives close by and we spent most of the day with him but took the boys to the pool for a while too. Dinner was provided by CCA kids that night too in the hotel ballroom.

Jonah was so curious about this guy and he kept finding him in the crowd walking over to look. I know it was innocent and I told him to say "hey". His dad was very nice and didn't mind me taking a picture with his son Scott. He is 26 years old. Very sweet guy.

Sunday breakfast was provided and we said our goodbyes. Our flight home was good even though we sat by the engines and couldn't see out the window---at all.
Jonah did better on the flight home but didn't fall asleep until we landed so Chris had to carry him off the plane.
In Atlanta airport going out to the van. We were all ready to get home. It was fun but it's always nice to get back in our own beds. Notice Jaron with his new Toy Story backpack with wheels. He was so proud of that thing. He felt like a big boy wheeling it around the airport.

Going to this family retreat was educational and humbling. We met so many children and families with many more medical issues than we could even imagine. I almost felt guilty for being there. Jaron looks normal and some of these children will never be normal. They were all so precious and I wish we could get to know them more. So many children with all different syndromes from all over the country all came together to make friends and form relationships with ones they can relate to. A place where they felt normal like they belonged where no one would judge them and they could truly be themselves. It was precious. We are so blessed.