Dr. Visits

Friday morning was our meeting with the craniofacial team in St. Louis.  Several of the specialists were out for the day but we got to meet with the ones important to us.  We first met with the nurse, DeAnne.  She took basic vitals and asked how he was doing. She looked at his tongue and said it looked good!  Since the ENT was not there, we asked her about his adenoids/tonsils and whether they would have any affect on him getting so many colds or his speech.  She said his right tonsil was fairly large (probably left over from the strep he had months ago) but they wouldn't affect him.  She suggested trying claritin or getting him allergy tested.  We also talked ADD/ADHD with her, sleep schedules,  the miracle of melatonin,  her kids....she loves to chat!  :)

Psychology was next.  We had to fill out a little evaluation form while we were waiting that I assume was a quick screen for ADD.  When the Dr. came in he said something like, "You seem to have your hands full with this one" or something like that. He asked if he had been evaluated for ADD/ADHD.  I explained he had but since teachers and us didn't match up, nothing was done.  He said signs become more evident as they get older.  He suggested finding a counselor not just for that but to help with parenting since parents don't get a handbook when kids are born.  I think he said the same things 4 years ago.

Next up was audiology.  We let them know about his dog toy incident and the hearing loss in his right ear.  They do several different tests that show if the ear is functioning and how well he can hear.  I guess one of the things showed the damage.  When they did the hearing test with headphones, it showed the loss at 4000mhz.  When they did it with the in-ear things, he had normal levels!  She said there is a small population of people that have collapsing ear canals and maybe when the headphones are on, they collapse and he does not hear as well.  Interesting... but good news! 

Speech was next.  We love Renee! She's just so peppy!  She had a little conversation with Adam to see how he spoke. Then she asked if we were doing any speech therapy.  I told her we had been in therapy for a year and have been stuck on S's and Sh.  She said that's what she had noticed most when he spoke.  We asked if it had anything to do with his larger tongue or surgery and she said nope - it was all just basic articulation problems and some are still developmental. 

Last, but not least, was Dr. Marsh who did his tongue reduction surgery.  He will be retiring the summer of 2015 so he also had Dr. Gage with him who will be taking over the practice.  He checked Adam's tongue and jaw.  He said if he was a betting man (which he isn't), he doesn't think Adam will need any corrective jaw surgery. He thinks everything can be done with orthodontics.  Right now Adam's teeth/jaw meet. (He does not have an over-bite or an under-bite.)  He said who knows what may happen during puberty but he's hopeful that it will stay about the same.  We also asked him about the tongue and colds and speech.  He said the only problem the tongue could cause is sleep apnea if it was still too large.   We are pretty sure Adam does not have that.  One thing that was interesting - he asked Adam to "do this" (as he touched the roof of his mouth with his tongue).  Adam was like, what?  So I told him - touch the roof of your mouth with your tongue - and he did.  Dr. Marsh said most BWS kids can't do that.  He said he has seen them do it at other times so he knows that they can but when he asks them to, they can't!    .....but Adam can! :)

That was it for St. Louis. Pretty good visit overall!  And we love the Drury hotel there - super nice staff, free beverages and popcorn all night, yummy breakfast in the morning, and an excellent discount if you are there to visit the hospital!  :)


Today was a visit to the orthopedist to check on his lower limb length discrepancy before school starts.  We had not been there in about 3 years because the last time we went, Adam freaked out tried to kick the doctor.  She told us to come back only if he was having any problems.

I made the mistake of letting Adam have chocolate Lucky Charms for breakfast this morning since I wanted him to have something to eat and he wasn't in the mood for the Cheerios he picked out last week.  I don't know if it was the cereal or not but Adam was super loud-disruptive-can't-sit-in -my-seat - boy when we got there.  It was a challenge just to get checked-in. I had brought the iPad hoping it would keep him occupied  - which it did - but then he would make loud commentary on his games.  We finally got in a room and got through all the questions from the nurse (all with Adam blurting out things like "butt" and "poop").  The doctor came in and Adam hid under the table!  Gah!  I pull him out and all he needed to do was stand so the doc could get a good look at his legs but he's leaning/hanging on me.  Finally got him to stand and let the doc look quickly.  Then the doc wants him to lay on the table with his legs straight.  He had to be difficult for a minute but then straightened out and as soon as the doc went to grab his feet to check discrepancy, Adam wanted his shoes off - which actually was pretty smart.  I think it would be easier to see without shoes on.  Doc eyeballed it and said he's at about 1cm difference.  Long story short - follow up yearly.  When he gets closer to puberty, we'll be better able to judge surgery options (if needed).  There is a new doc that is at the main Children's hospital that specializes in lower limb discrepancies but this guy said he can follow him up until puberty and then send us there. 

Dentist visit

Adam had his biannual dentist visit yesterday.  Guess who has some wigglers??  He is also starting to get his 6 year molars in as well!  Big kid coming through!  :)

Academy Camp!

Adam is having a great time in his "Crafty with Food" camp with Aunt Brelle and Young Chef's Academy!  Yesterday was all, "Guess what?", "You know what?", and "And THEN....." when he was telling me about his day.  Soo many cool ''spearmints" going on and yummy food being made...and eaten!  I love how he explains all the experiments and how he makes the food in the afternoon.  He's pretty detailed!

Eating lunch in the cafeteria is another cool new experience for him. He thinks the cafeteria is really cool.  It's like a "restranaut" with all the people talking and all the choices.   The only problem he has had is that he has been dropping his food - it just slips off his plate.  He was all like "I'm not very good at carrying food on plates."  Thankfully someone had seen it and helped him clean up and get some new food.  Yesterday he said he got a corn dog, 2 pieces of bread - plain, and chocolate milk.  It cracked me up to hear that. He just felt like getting 2 pieces of bread with his dog!  Today he just got chicken nuggets.  Can't wait to hear about tomorrow since he doesn't like hamburgers but maybe if everyone else is eating, he will too.  Seems to work when he cooks in the afternoon.  He told me how when he's done he has to put his plate in one place and the silverware in a slot for the chef to clean.  Ha ha!

After lunch the kids gets free time. They get to choose to go to the pool, the computer lab, or play outside.  He really thought he would want to swim everyday.  He tried it yesterday and said it wasn't as fun as he thought.  Today he was going to go to the computer lab if it rained or outside if it didn't.  Well, it didn't.  I asked him if he had fun since he said the kids yesterday said going outside is the best! Umm...it was "horrible".  What??  Apparently the boys have some kind of ball game they like to play.  Adam said it was like a combo of volleyball and dodge ball.  He didn't want to play that game and got sad that none of the boys wanted to go play on the playground.  He said he stood by the fence and cried.  :(  One of the counselors played UNO with him and then some girls came to play but it was time to go in.  So, tomorrow he's going to see what the computer lab is.

I tried to explain to him that if he is only one out of a group that they aren't going to all stop what they are doing if they are all enjoying the game.  I also said that he could play with the girls. They like to swing, play tag, and play hide-and-go-seek.  I think he just gets so used to finding at least one boy at the parks that he was surprised when none of the boys wanted to play with him. It was soo sad tonight at bed time because he said everybody ignores him.  I think it's more that if he doesn't get his way, he thinks he's being ignored but it still breaks my heart to hear that

Team meeting

Adam's speech teacher was commenting on the number of colds he has gotten in the past year.  She said since he is mostly a mouth breather, the air doesn't get filtered through the nose and that could be a reason why.  She mentioned a friend of hers whose daughter has Down's (another syndrome known for their enlarged tongues) who went in for a sleep study and found out she stopped breathing A LOT of times at night .  She had her tonsils and adenoids removed and is doing much better.  She tried to look in Adam's mouth to see if maybe that was causing him to keep his mouth open (other than his congested nose) but she couldn't get a good look.  She said it might be worth checking with his doctor.  That's when I realized that Adam has not been back to Sr. Louis for a check-up in a while.  I thought it might be good before he gets into school full-time to see what the cranio-facial team has to say so I contacted them today to see if they had any dates still available this summer.  The only date left was August 9th.  (Happy birthday to me!)  The meeting takes 3-4 hours for all the specialists to cycle through.  It will be nice to talk to people who are familiar with hemi/BWS!  I hope Adam cooperates.  I think he did fairly well the first time (he was almost 2) but it's hard to remember.  I guess as long as he has the iPad and his DS he'll be OK. Here's all the members of the team....

•  Audiology

• Genetic Counseling

• Neurosurgery

• Orthodontics

• Pediatric Dentistry

• Pediatric Nursing

• Pediatric Ophthalmology

• Pediatric Otolaryngology

• Pediatric Psychology

• Plastic Surgery

• Speech/Language Pathology

• Social Work.

Beach part 2

Wednesday we spent several hours playing at the beach. It was such a nice day!!  Later on we explored the pier where some kid had just caught a shark!  He said it was about the 14th one he had caught this trip. Adam got to touch it (and the guy even offered to let him hold it - yikes!) before he threw it back in. Thankfully it swam away.  After that we headed over to Haley's ice cream shop.  The kid working there gave Adam a HUGE scoop of sherbet.  Dave got to talking to the kids there about music so I asked Adam if he wanted to sit outside and look at the ocean as we ate.  As soon as we walked outside our ice cream started dripping too fast to eat so we ran back in.  Ha ha!  We got back to the house in time for Adam to take a quick evening swim before it got too dark.

Thursday was really warm so we decided to go to Planet Fun!  We started off with mini golf.  Adam was so excited until he saw the room was dark. (It had black lights and fluorescent paint to look "cool" and underwaterish).  He literally went running and screaming out of the building. The place was empty so the nice lady working turned the lights on for us.  After our 9 holes of golf and not keeping score, we moved on to bowling.  Adam got bumpers.  We did not.  I won!  (Adam was not far behind).  Then we loaded up a card for the arcade.  Adam LOVES winning tickets (which were paperless and went on the card here - kind of cool) and trading them in for candy! 
Later, when it was cooler, the guys went swimming while I enjoyed the beach.

Friday we packed some lunch and headed to Southport to go the Fort Fisher aquarium.  We ate lunch on the ferry.  The aquarium was a little crowded since it is so small and a school group was there.  Adam was interested in the beginning stuff but once we went inside where it got dark and crowded, he just kind of walked by everything.  We found a playground and snacks on the way out which he liked but it was time to go catch the ferry.  And of course as we were leaving, so was the school group.  We stopped at Patronies on the way home for some carry-out.  YUMMY meatball sub and calszone! Then we all went swimming.  The water was perfect temp and great waves!  Great end to a great week!

Beach!

We got to the beach Saturday night.  We made a quick trip to Food Lion then let Adam unwind at the house after the long trip.  I think he ended up staying up to close to midnight.

Sunday morning was pretty chilly!  Dave loved it! We took a walk down to the beach with our jackets on and then it started drizzling so we decided it would be a good Walmart day.  Ha ha!  The day ended up warming up nicely so I took a walk on the beach while the boys decided to hang out at the house.  After dinner, we checked out the concert under the bridge.  It wasn't really a band - more like a couple of guys in Hawaiian shirts singing along to some music maybe?  WE got there when they were doing a "dance break".  They were playing the Electric Slide and other songs had a bunch of people line dancing on stage.  Adam had fun dancing!  Then they took a break so we left.  Dave's favorite time to walk on the beach is in the evenings when it is cooler so we headed back out after the "concert". The tide was pretty high which made Adam freak out!  I think he was afraid it was going to go all the way up to the houses or something.  I don't know but all of a sudden he was screaming and running back up the walkway.  Oh, well! Bedtime!  Nope - he stayed up again until close to midnight.

Monday was beautiful!  I got my favorite of the day - my morning walk/run on the beach in the morning.  After breakfast we all headed out to the beach for awhile.  It was actually a little chilly for me.  Adam and Dave said that once you got used to the water it wasn't so bad but I never got warm enough in the sun to even want to go in the water. The breeze was pretty cool. Once Adam played with everything we brought down and got buried in the sand he was ready to go back to the house.  It was lunch time anyway.  We went out later (before the tide got too high) to go fly a kite.  Adam was more interested in trying to find the kite's shadow and then once he lost that, he grabbed handfuls of wet sand and threw it in the ocean.  Then it turned into walking handfuls of sand into the ocean. Next, he was in the ocean.  He was having fun but it was that time of day where it looked like he was waaaayyy out there even of the water only came up to his knees.  It made me nervous so we finally got him to come in.  Showered and asleep by 10:45!

Today we headed out to Broadway at the Beach/Myrtle Beach to check out the Wonderworks museum.  It began with yet another freak out.  To get in to the attractions you are "supposed" to go through an "Inversion Tunnel" (because the building is upside down).  Adam saw it and started to run back out the entrance.  The staff showed us the door to bypass it but I just carried him through.  One of the first attractions through the tunnel was the Hurricane Shack where you can feel the effects of high winds.  Adam HATES wind.  Any little bit freaks him out since last year's power outage.  (We didn't go in the hurricane shack but man, Dave and I wanted to).  Right next to that was a thing where you stuck your hand in a metal like glove and use your hand as a lightening rod.  Dave did it to show him it was OK.  FREAKED him out again.  He says he does not like this place and wants to leave.  We get to the next room and there's some basketball hoops games, virtual air hockey, virtual other things...and he's OK!  Not the most interesting stuff on the next couple of levels but then we find the arcade and ropes course.  We all get suited up for the ropes, walk up the steps, Dave goes across one of the planks to show Adam and Adam says nope so we turn around and head back down the steps and get all unharnessed.  It's arcade time!  124 tickets later and a super nice guy working the prize booth and Adam leaves with a push-pop, a couple tootsie rolls, a laffy taffy and a HANDFUL of army guys.

We decided to see what else might me fun in the area.  We spot this giant inflatable Superman from the parking lot and find out it is like an outdoor Kingdom of Bounce - just a bunch of inflatables for kids to play in.  We told Adam we would see how much it costs then decide if there was anything else to do.  $9 so we tell him we are going to walk around first.  Adam did not want to go in any stores (not even the giant candy store) and was Mr. Grumpy face until we turned around and went back to the Bounce Houses.  Then he was a happy camper for nearly an hour!  (Found some kids to play with).  We asked him if there was anything else he wanted to do and he said he wanted to go back to he Wonderworks.  OK!  (They stamp you so you can come and go all day).  He Dave played a couple more games of air hockey and attempted the virtual rollercoaster but Adam hit the abort button as soon as it started moving.  What he really wanted to do was go back to the arcade.  While they did that, I decided to do the rope course on my own.  It was fun!! I don't think Adam would have been able to do it since some of the ropes that you can hold on to to help you across were a little high.  But that was my favorite part of the place!

Dinner, home, now sleep.

Parent/Teacher conference

Dave and I went to Adam's parent/teacher conference on Friday.  We chit-chatted with Mrs. Tucker while waiting for Mrs. Allen and she showed us Adam's self portrait that will be hung up the school's art show next month and talked about how good the class was on Thursday when they had a substitute teacher.  She said, "Even Adam was pretty mellow!"  I thought that was funny since he was waiting anxiously for Gramma and Pop-pop to arrive that day.   Mrs. Allen arrived and she passed us a folder that had some of Adam's pictures and writing from the year in it as well as his evaluation.  She mentioned Adam being as smart as a whip and funny. I told her I think Adam's goal is to be the class clown sometimes. She told us how cute it was one day when they read a book that Dave illustrated.  They always read the author and illustrators names and Adam perked up and said "That's my Dad!"  For the next 15 minutes, she talked to Dave about work.  I looked over the evaluation form and noticed 3 D's (for developing skill as opposed to M for meets) and they were for sitting, following directions, and something else I can't remember but along the same lines. Not surprising but a little because they didn't both check those things on the add evaluation earlier in the year. Mrs. Allen said something about it being the rowdy boy class.  Then our time was up and the next parent was waiting.  Sooo...I guess he's doing well!