Week 70

Dr Steven Cowan

We decided to try a different doctor after our last appointment with Dr. Bock.  If you recall we waited 45 minutes in an exam room while he finished his dinner.  We were also getting concerned that after each visit with Dr. Bock we would be putting Ryan on a different supplement.  We actually stopped all of his supplements recently.  It was getting to be too much.  Dawn found this doctor through one of her work friends that was bringing her son to Dr. Bock but decided to try this new doctor.  We meet with Dr. Cowan for about two hours and we both like him and his approach.  This appointment was only with Dawn and I; Dr. Cowan did not want us to bring Ryan with us.  He believes that parents are more honest without the child present.  He is a pediatrician by training and shared our belief that Ryan was on too many supplements.  We spent the first 45 minutes talking about Ryan from birth to now and he took lots of notes and asked follow up and probing questions.  He looked over all of Ryan's lab tests and all of the supplements that he has been on over the past year and a half.  

For the next 45 minutes he went through his philosophy of different types of brains and how each section of the brain works with the other parts of the brain.  While this part felt a little long to the both of us it was interesting if you looked at it from some of the brain research classes that I have taken over the years.  We also went over a few steps and suggestions for us to discuss with the teaching assistant that has been assigned to Ryan when he goes into Kindergarten.  These were fairly practical suggestions and something that we will discuss with the teacher and the assistant when we meet with them in the fall.  


We are still going to have Ryan on the GF/CF diet but he wanted us to try a different approach with the food.  He wants us to limit the amount of carbs that Ryan is eating and to increase the amount of protein that he is eating.  He also wants us to try getting him protein for breakfast to balance out any carbs we give him.  We are not sure how we are going to do this but we are working on a plan.  He is still going to have us give him oils and supplements but these are going to be at different levels and a more manageable amount.  We are still working out the dosages with him but we will keep you updated on the types and levels.  We are still going to be giving him injections of B12 but these are only going to be once a month as opposed to every other day. The biggest change in his diet is that we are going to try to re-introduce eggs, starting with once per week.  We will keep you updated.  


One of the interesting things that Dr. Cowan spoke about is that when Ryan gets to the point that he can come to us and explain that he is afraid of something, like school, then he will no longer be Autistic because he is at the point of being able to make connections and communicate effectively with us expressing his fears and asking for help.  Both Dawn and I thought that this was a little out there but it did stick with us.  The ironic part was later on that evening when we were putting the kids to bed, Ryan came out of his room and told us that he was afraid of going to sleep!  Not sure we are ready to cancel our next appointment but it was very funny.  Our next appointment is in September and  we will be bringing Ryan in to meet Dr. Cowan.  

PC
 
We celebrated a few birthdays this week.  Phil's mom came during the week so that we could celebrate her birthday as well as Julia's since she will be in Pittsburgh visiting Phil's sister and her family for the remainder of August.  Here's a nice picture of the kids with their grandma:

We also went to Norwalk, CT to celebrate Luke's First Birthday.  Luke is the son of Phil's cousin.  The kids had fun playing on the playground and Ryan did a good job sticking to his diet.  He did sneak in a few pieces of buttered popcorn, with a sly smile on his face each time.  But when cake and ice cream came out he was excellent about asking for his special cupcake.  

I want to share two stories this week where Ryan proved to be very protective of his sister.  The first took place in our house in the evening.  We had friends over for dinner and dessert and while eating ice cream my friend took some of her whipped cream and placed it on Julia's nose.  Not liking whipped cream, Julia got very upset and felt offended.  She immediately ran into the living room, buried herself under a pillow, and bawled her eyes out.  Ryan turned to my friend and said, "That was not very nice to do to my sister!"  After settling Julia down, we all got a good laugh out of both kids, and to make ammends, my friend wore whipped cream on her nose for the remainder of the evening!  It's a good thing these particular friends have been around our kids enough to know their personalities and I hope they didn't feel offended :-)

The other incident took place at the Danbury Fair Mall.  Ryan and Julia had spent most of the morning and afternoon with another friend of mine so that Phil and I could attend Dr. Cowan's appointment.  Let me preface all of this by saying my friend shared that the kids were excellently behaved all day and were super nice to each other.   I guess it is only around Phil and I that they are wild and spiteful with each other!  Anyways, I met all of them at the mall and after a ride on the carousel the kids played in the playground section.  At one point I heard Julia tell Ryan that a little boy was hitting her hand.  Now I didn't see this little boy hit her but I watched as Ryan asked her which boy and Julia pointed him out.  This kid couldn't have been more than 18 months old.  But Ryan marched over to him and pointed in his face and said, "You don't slap my sister."  I immediately ran in the area and pulled Ryan away from this kid and told Ryan that he was just a baby and didn't realize what he was doing.  About two minutes later, sure enough, this little kid went up to Julia and slapped her hand.  For fear that Ryan would eventually see this kid slap his sister and then proceed to knock him in the jaw, I decided it was time to leave!  Now if I could just get Ryan to stop hitting Julia himself, we'll be golden!

The kids' new school invited us to their annual family day picnic.  Julia met her new pre K teachers and we met Ryan's teacher that he will be with after he returns from his half day kindergarten program (Ryan ran right over to the bouncy house and slip and slide and showed no interest in meeting school teachers!)

 And as if we didn't have a busy enough week, we squeezed in a day trip up to The Berkshires to a place called Jacob's Pillow.  We attended a dance performance in which one of my former students was part of.  It was a great show, but Ryan wasn't half as interested as Julia was.  But afterwards I did catch Ryan doing a little dancing of his own!

 DC

Week 69 - Vacation!

Vacation Time!

We booked a week long vacation to Williamsburg, Virginia.  Ryan was not himself most of the day Saturday while we were running errands, packing, and preparing for our trip.  We left early Sunday morning to tackle the 8.5 hour ride.  Ryan has been on long trips before, but he was unusually hyper for part of this car ride. We figured it was probably due to the food he ate Friday night at the baseball game and also due to the excitement to go on vacation

With the joys of vacation also comes the downfalls of vacation for someone on a special diet.  We did our best all week to give Ryan his regular diet foods when available.  We made lunch and brought it with us to the parks on most days and the meals we ate in the condo were on his normal GFCF diet.  But there were times where we were getting treats and snacks out and about, and we let Ryan cheat.  We certainly paid for it with his behavior, but some of that behavior would have been there anyways since we ran the kids ragged all week.  There wasn't much downtime, and we certainly can relate to the saying, "We need a vacation from our vacation!"

By the way, I tried this ice cream that we bought for Ryan to keep in the condo all week and it was excellent!


Peanut Butter Zig Zag

 Sunday:
After checking in to our condo and unpacking, we headed over to Busch Gardens.  Ryan loved riding the rides, so much so that he barely wanted to watch the fireworks in the evening.  We gave in to the kids begging for cotton candy and so began Ryan's week of food indulgence.

Monday:
We spent the entire day at Water Country, a water park close to Busch Gardens.  We opened and closed the park and Ryan rode almost every ride, many of them more than once.  He was excited to ride the big, fast rides.  I wish I brought a water camera with me to take more pictures but I didn't so I left my regular camera in the locker most of the time.  But there are a couple of pictures and a video below.  We did some rides all together as a family but there were times where Ryan wanted his independence so we let him ride some of the smaller rides while we watched him from the sidelines.  Ryan's OCD was in full force today and he was a bit on the bossy side.  But overall, both kids did a great job lasting 10 hours of constant walking and swimming on a day that was close to 100 degrees and was still in the 90's when we left the park at 8pm. 

 
Tuesday:
After all of the walking we did the day before, we opted to hit the beach.  It was another hot and sunny day and we only lasted a couple of hours.  We went back to the condo and took a dip in the pool which proved to be refreshing.  After dinner we did some shopping for souveniers and gifts and homemade fudge, which the kids loved!  During our shopping spree we found a Thomas the Train section, and Ryan enjoyed playing for a little while.  Since he plays with his trains every day at home he was going through withdrawal!

And just when we thought we couldn't fit anything else in, we went to a pirate-hemed mini golf course.  Ryan got a hole in one on the first hole, but then after that it all went downhill.  The kids didn't want to even try to play the game correctly.  It was hot and sticky and they were tired.  We were all losing our patience.  We got through the 18 holes as quick as we could and called it a night.

Wednesday:
We spent the day, another hot one, at Busch Gardens.  We dressed the kids in their bathing suits and spent part of the day enjoying the sections that were available for kids to run through the sprinklers and went on some water rides.  Both kids continued to enjoy riding the rides, the faster the ride, the wider Ryan's smile!  We saw a few shows as well and of course ate some treats!



There is Phil and Ryan in the last row!

This is the picture taken of us on the log flume.  Phil was the only one who didn't look terrified of the steep drop!

Thursday:
We decided to slow down the pace and visit Colonial Williamsburg today.  Big mistake.  The kids were not interested at all and there was just too much walking around with very little to do and see that would keep their interst.  Within two hours we were back at the condo and we all took a nap, except for Ryan who laid in bed with us and watched TV.  For dinner we went to a pizzeria that sold GFCF pizza, and as an added bonus, their pizza is 100% organic.  It was tasty, but a little on the expensive side because everything is organic.  After dinner we returned to Busch Gardens for more rides, shows, and fireworks.  Ryan's silly and eratic behavior continued and he had a few meltdowns.  Some I would say were age appropriate and just from being tired, but it is obvious to us that the inconsistency in his diet is partially if not mostly to blame. 

Trying to make the best out of Colonial Williamsburg

Before watching the Pirate 3D/4D show at Busch Gardens; Ryan got spooked a couple of times!

Phil, Ryan, and Julia on the kiddy roller coaster ride. 

Making wine in Italy!

What would a visit to "Italy" be without enjoying some sweet desserts before the firework show?

Julia with the cast of characters who performed in one of the shows we saw.

Friday:
With the end of our vacation looming around the corner we decided to make a return trip to the water park since the kids enjoyed our first visit so much.  We got there just before it opened but didn't stay until closing.  By 5pm we were exhausted and headed out.  But since we knew the park much better than we did on Monday, we still went on just as many rides.  We knew which order to do them in and avoided waiting on lines.  But it is impossible to avoid the walking.  In fact, by the end of the day, Ryan had worn a hole in the bottom of one of his brand new water shoes! 

Brownie sundae in a waffle cone

They were so yummy on Monday that we went back for another on Friday!

The kids with the performers of the diving/acrobatics show.

Saturday:

This was the only day we went out for breakfast since breakfast seems to be the most difficult meal to find food for Ryan to eat.  We stocked the condo with his milk, cereal, waffles, and french toast sticks and that served us just fine all week.  But we again wanted a treat so we went out for waffles and pancakes.  Afterwards we went to the beach again, but didn't do much swimming because there were lots of jellyfish out.  The kids spent a couple of hours playing in the sand and then we headed to the condo pool to cool off and wash some of the sand off.  By the afternoon it started to rain and we were actually thankful for two reasons: 1. it gave us an excuse to hang out in the condo and pack up, and 2. we were thankful the rain held off and didn't ruin our week.  Ryan continued to be hyper and jittery, and had trouble sitting still most of the day.

Being silly in the car.

Searching for sea shells.

 

What a great week!!!

DC

Week 68

Take Me Out to the Ball Game!

This week Ryan attended his first baseball game. We went to see the Renegades at Dutchess Stadium for an early celebration of my dad's birthday. We let Ryan eat things he normally wouldn't, like Cracker Jacks and regular ice cream. He was so excited to be there, especially since two of his cousins were there too. And the four kids rode in the car with Tommy and Beckie so they had a ball altogether! After the game there were fireworks and Ryan didn't even cover his ears. Below I included a picture of him in awe during the fireworks show, but most of the time he was smiling and saying, "This is so cool!"

Enjoying his "real" ice cream!

7th inning stretch...

Within the past month Ryan has went from standing in the shallow end with swimmies on to jumping off the diving board with no swimmies on.  His first jump was on the morning of August 1st.  He was so proud of himself!  Here's a picture of his first jump and a video of his second jump.

 Ryan's sunflower that he planted at PARC is doing so well, it now has multiple flowers budding!

Ryan's cousin, Amelia, came for a sleepover.  They will be attending the same school in the fall when he enters Kindergarten.  She'll be going into second grade.  The next morning during breakfast Amelia says, "If anyone bothers Ryan, he just has to tell me and I'll take care of it."  How funny!  They are so protective of each other!



Technically Ryan can't use the goggles because he won't go under the water, but he still likes to wear them.  I tried to get him to hold his nose and go under, and he was going to attempt it but chickened out at the last minute.  When he's ready he'll do it.  But I do want to share something funny that he said when he was trying to convince himself to put his face in the water.  "I wish I had a wall here (pointing to his nose) instead of two holes!"

I made Ryan a new brand of pancakes called 1-2-3 Gluten Free.  Even though it isn't an egg free recipe and it takes me extra time to modify the directions to make it egg free, I like them better than the Cherrybrook brand.  The kids like when I use the heart shape mold, and of course I always add GFCF mini chocolate chips to the batter. 

Ryan's pancakes with a side of fresh blackberries from papa's garden.

DC