Week 36

Merry Christmas!

We had such an exciting and busy week.  Here are some pictures to help share our story....

We received a special ornament from one of my dad's cousins.  Under the puzzle piece it says "In Support of Ryan".  Ryan really liked the ornament!



Me using my new Christmas present... A Vitamix.  Here I am making soy ice cream for Ryan.  I can even make rice milk with it!

Ryan enjoying his special soy ice cream.

Ryan playing the game Perfection.  He had a ball racing against the clock to insert dozens of shapes into little openings.

The calm before the storm... the hugging before the fighting over who gets to play first with the new toys!

A visit from grandma yielded lots of fun opening presents and playing with new toys.

Spending Christmas Eve with big cousin, Amelia.

Christmas morning...first glance at Santa's delivery.  Yes, it was dark out!  They were up EARLY!

Looking at pictures in Phil's new photo calendar.  They are laughing at the picture of Ryan with the charcoal mustache.  Some of you may remember that photo!  If not, look at week #14.



Entertained for almost an hour playing Chutes and Ladders with nonna and papa.




Ryan and Julia with the new shirts Nick brought them from his first semester at Cornell.

Ryan enjoyed watching all of the big cousins dance and do Karaoke.

At one point Ryan thought I was taking a picture of him.  As I moved the camera around the room to get everyone in the video, he kept jumping in front of it.  Clearly a camera hog in this instance!  Here's it is...

What a wonderful week!  We hope all of you had a Blessed Christmas and we wish you a Happy New Year!

DC



Week 35

Sorry everyone... with the holidays approaching we just didn't have the time this week to keep up with the blog.  We have a few pictures to share... we'll post them next Sunday along with stories and pictures from this week.  Merry Christmas!

Week 34

Lots of photo opportunities this week to share with you!

As promised last week, here are some pictures of Ryan at our family reunion last Sunday.  He loved the show put on by the clown and really got into it.  It kept him entertained and on task for an hour.  He even volunteered during her show. 



Ryan wasn't crazy about standing next to Santa Claus
















Even though Ryan enjoyed the clown, he did cover his ears whenever she did anything with the balloons.  He was afraid one would pop and be too loud and scare him.  All of the kids were getting up to the microphone to introduce themselves and tell the crowd who their parents and grandparents were.  Just about every child did this, but Ryan didn't want to.  At one point we almost convinced him and he started heading up to the microphone, but then everyone started clapping and cheering for him because he was being brave, and he turned around and sat right down.  I guess it was the noise or over abundance of attention he was getting.  Several family members commented on the big changes they saw with Ryan.

During the week we had an appointment with Dr. Bock for a checkup.  While in the waiting room Ryan sat quietly at a little desk and wrote with a pen in a coloring book.  There were other children in the office bouncing around and their parents were running around after them and cleaning up after them.  For once Phil and I felt relieved not to be the ones chasing our kid.  Ryan was well behaved not only in the waiting room, but during the entire visit.  Dr. Bock seemed impressed with Ryan's improvements and accomplishments.  We told him about the sign language and Dr. Bock asked Ryan to show him, but he wouldn't.  Ryan isn't great about performing something on the spot for people.  I don't think he likes the attention. 

So the summary of our appointment: we are stopping the Nystatin.  We are increasing the oils because Ryan's skin is still very dry and scratchy.  So now we have to give him oils in the morning as well.  And because we feel the injections are helping, he suggested doing them every other day rather than twice a week.  I am thankful that Ryan is good about getting the injections; I don't think we would have agreed to give them every other day if we had to go back to holding him down while he's kicking and screaming.

On Saturday Ryan performed in PARC's Holiday Show.  I felt so bad that I couldn't attend (Julia had parent day at ballet class), but Phil video taped it for me.  Phil's mom also went and both said the show was great.  Ryan was on task the entire time.  He followed all of the dance moves and sang every song.  We had him dressed in a shirt and tie, and Ryan pulled out the front tails of his shirt while on stage.  Luckily he was in the back row!  Here are some pictures that Phil took:

Still a little unsure of being near Santa, but getting better.

Ryan with Miss Sue, his special education teacher at PARC

Ryan with Miss Rose, one of the head teachers in his classroom.

After the show Phil's mom took us out to lunch.  Both kids were a little wild, but I guess better wild at that time than on stage!

And this blog wouldn't be complete this week without a couple of pictures of Julia at ballet class.

Ryan and Julia had a playdate at a friend's house.  They all made gingerbread houses.  Ryan enjoyed this task, and did a GREAT job eating just a few candies that I told him were okay and he steered away from all of the others.  What great will power!  Not many people can sit next to a bowl of M&M's and not eat at least one!



The finished product!

I caught Ryan and Julia working on a Sudoku puzzle.  Okay, they weren't following the rules, but they were practicing tracing their numbers.  They are their mother's children!

I thought this was hysterical- they both looked up at me at the same time giving me the
"we're busy, stop taking pictures of us" look!

Yes, more hats made by Miss Jessie at Noah's Ark!  Ryan proudly wears them around all day!

On another note, our thoughts and prayers go out to Baby Olivia (see our blog on Week 18) who has been admitted into the PICU today with pneumonia.  Get better soon Livvy!

DC

Week 33

Choo,Choo... Trains, Trains, Trains!

This week was filled with lots of events and also ups and downs with Ryan.  One of the events we went to was the Train Show at the Botanical Gardens.  This was Ryan's third annual trip there.  Here's a video of Ryan, who was in awe the entire time and followed the trains around their tracks. 

During our visit to the train show Ryan was very friendly with family members that he doesn't get to see very often.  We were proud of Ryan overcoming his shyness. 



Ryan showing Aunt Rita the trains and buildings!






Ryan hanging out with cool cousin Guy


















Ryan enjoying a stroll back to the car with Frank.



En route to the show we discovered how tasty Rice Chips are made from a brand called Lundberg.  Phil purchased them from Stop-n-Shop.  Ryan did really well regarding his diet this week.  Over the weekend we went to a family reunion and the dessert table was lined with everything you can imagine, and nothing that Ryan could have.  We brought him a special treat, but he was so busy doing other things, that he didn't bother asking for anything to eat for dessert.  So many cool things happened at that reunion, but since we just got home a little while ago and I want to post this blog tonight, I will wait to include this event into this upcoming week's report.  I took over 150 pictures and I want to be able to include some of them for all of you to see, so something to look forward to in next week's blog!  Also, we have an appointment with Dr. Bock on Tuesday, and we'll also post about that as well.

Okay, so I mentioned that Ryan also had some 'downs' this week.  He fought a lot with Julia the past few days.  Although Julia did her share of instigating, Ryan did have several meltdowns and lost his temper.  At one point he screamed at the top of his lungs.  I never heard him scream so loud!  It was a stressful week in terms of getting all of the things done that we expected to do because it was difficult to leave the two of them alone to play.  I wish I had a nickel for each time Phil or I had to get them to calm down, break up a fight, or settle a dispute amongst the two of them.

Ironically, about five minutes after Ryan's deafening scream, I witnessed him putting together an alphabet train puzzle.  He was adding a part of the train, then repeating the letters he had done.  He was speaking slowly and I thought it was odd, until I looked at him and noticed what he was doing while he was speaking.  Remember the picture of him in last week's blog studying the sign language alphabet chart?  Check out this video of Ryan signing the first part of the alphabet!



He did this about a dozen times while I was watching.  He got stuck on three different letters: K, S, and X.  For the first letter, he looked up at me and asked me, "What's K?"  After I gave him a perplexed look and told him I had no idea, he ran over to his chart to check.  He did the same whenever he got stuck, after briefly looking at me to see if I miraculously knew!  I guess I will need to start learning the letters myself!  We asked Ryan's teacher and she said that they learn how to sign a letter when they focus on that letter in school.  I believe they do 3 letters a month.  Ryan has been studying the chart and the picture we took of him last week was him practicing them. 

For those of you that know me, I am not big on having things "out of place" in my home. I prefer things neat and in order. But with some of the kids' things I've been changing my ways. I love when they make me pictures and hang up their artwork, even if it isn't perfectly straight. We rotate their pictures each week with the new things they bring home in their backpacks. When I saw the crumpled up paper of alphabet letters I considered putting it in the folder we have on the desk with important papers from Ryan's school. But instead I taped it up on a wall in the kitchen to show Ryan that what he does in school is important at home as well. I never expected to see him stand in front of it to practice his letters, and you can imagine my surprise watching him sign the entire alphabet. He comes home each week learning new things; things that I wouldn't have expected him to learn and ideas I wouldn't have expected him to grasp until a few years down the road.

Continuing with the "train" theme, we took the kids to NJ to ride the Polar Express. The Polar Express is one of Ryan's favorite movies. He goes to sleep each night listening to the soundtrack. We've played the movie so many times that it is scratched and doesn't work properly. Just this past weekend I purchased a brand new one. Here are some pictures of Ryan and Julia in their pajamas enjoying the train ride.



Ryan waiting for his ticket to get punched.





The kids received bells from Santa, and wore them the entire trip.



And here's a video of Jingle Bells!

By the way, Phil experienced for the first time what it is like to give Ryan an injection. 

DC