Happy 8th Birthday Ryan!

Another birthday has passed and I can't believe my "baby" is 8 years old already!  Where has the time gone?

With our new shirts on May 12th, the morning of Ryan's birthday!

Mahopac Middle School

Take notice of Ryan's hand.  He was very possessive of his cake this year.  He didn't want Julia anywhere near it when it was time to blow out the candle.  By the way, the cake on our left is a GF chocolate chip cookie cake made by Carol, and the cake with the Darth Vader candle is a GF cake from The Pastry Garden.  Both were extremely tasty! 

717 pieces!

Before bed Ryan studied the box of his new Lego set.  He eagerly asked if he could head to bed to start his drawings now that he has lots of details in his mind.

This is where I found Ryan at 5:30 a.m. this morning. Determined to build his new Lego set without our help.  

He spent about 4 hours on it today (2 hours before school and 2 hours after school) and he is a little over half way done.
It is coming out great!

Some old pictures to look at.  No, this isn't Jack, it is Ryan!  He was 18 months in this picture.

And he was three and a half years old in this picture:

And how about this video of Ryan receiving one of his B12 injections.  It feels like a lifetime ago that we needed to do this.  It brought me to tears watching this video and reliving flashbacks of the months and months of struggling we went through to get Ryan to this point getting his injection. Ryan has come so far!

Since I didn't post for Mother's Day I want to share one of the gifts Ryan made me.  It is a letter that I will treasure forever!

My four beauties!  How did I get so lucky???

Last, but not least, thank you to everyone who reached out to Ryan for his birthday.  I passed along all of the messages and showed him the pictures of people wearing their Ryan Express shirt.  The Autism Speaks walk is coming up on June 1st.  We hope you can join us!  If you would like to join our team or make a donation, please follow the link below.
The Ryan Express team page

DC

Week 160- Happy Birthday Ryan!

Happy Birthday Ryan!  It has been a very eventful seven years but we would not trade them for anything.  We love you so much and we are proud of you for all that you have accomplished and all that you will accomplish.  Our "baby Ryan" is growing up. 

Seven years old!

Getting too big to sit on Grandma's lap!  

Thrilled to finally get some cake!  

Mother's Day

I am constantly amazed at how committed Dawn is to this process.  If there is a doctor's appointment to be made, she somehow finds a way to get it weeks ahead of everyone else.   She is on top of Jack's appointments and what he needs at daycare, Julia's Irish step dancing competitions and soccer games, and Ryan's Religion homework and when there is a party in his classroom that we need to send in some GFCF cupcakes!  She is the person that holds us all together and without her we (me) would be a complete disaster!  How she finds time to develop amazing lessons for her students and all the other things that she needs to do for her job is a mystery.  Yet each day she gets up, and shows us all the love and grace of a person without a care in the world.  It is amazing and Ryan, Julia, and Jack are the luckiest children in the world having Dawn as their mom.  Happy Mother's Day beautiful!

All together with the best mom ever!  With some drool and ketchup stains!

Ryan Express shirts on Friday and pins

Mahopac Middle school showing their support!  

On Friday, Dawn received a call from the Assistant Principal telling us of another incident where Ryan broke a rule to enforce a rule.  During reading time, Ryan choked a student that was not following the rules, and then at lunch told the same boy to look under the table and then he kicked him in the face.  This is the fourth incident this year where Ryan has resorted to violence to enforce a rule in school.  We had an appointment with Dr. Hahn that afternoon and Ryan refused to talk about it.  He hid behind me the entire time and refused to talk to the doctor about it.  After this latest incident and the fact that we do not believe the other medicine is working, we decided to give Focalin a try.  This is similar to Ritilan.  Focalin (dexmethylphenidate) is used to treat ADHD.  The psychiatrist still wants us to keep giving the Fluoxetine to Ryan and we have an appointment with him at the end of the month to assess how things are going.

We gave Ryan the Focalin a try this weekend and he was zooming!  It is a time released drug and a few hours in, he was all over the place.  He was talking a mile a minute and went from one thing to the next.  We noticed that this was about 2 to 3 hours into the medicine and then he calmed down after an hour.  We assume that this is just his body getting used to the medicine and are hoping for the best as we give him this new medicine and send him to school tomorrow.  Dawn is emailing his teachers to give them the heads up in case he is all over the place again tomorrow.

PC

Day 49

We are psyched about the walk this weekend.  Colleagues at Mahopac Middle School purchased team shirts and wore them today to support Autism Awareness.  Phil and I are blessed to have so many people in our lives that have embraced our cause, and more importantly, have embraced Ryan.  While Ryan may not realize it now, he is not only being raised by his parents, but also by all of the people who are there for us.  There is a saying "It takes a village to raise a child".  It goes without saying that Ryan's village includes our family and friends, his teachers and support staff, and his doctors.  But it goes beyond that list.  It includes the colleagues we work with who have been supportive and lend us their ear and a shoulder to lean on at work.  It includes the people that have provided us emotional and financial support.  And I can't forget those that check in with us daily to see how we are doing, provide us with information and encouragement, and motivate us to write this blog each night.

For many years I questioned my purpose in life.  I often lie awake in bed crying because there are so many issues in the world that I can't change.  There are millions of people (and animals) suffering from disease, hunger, and abuse.  I want so badly to make a difference, but have never felt empowered to do so.  Until now.  For the first time I am recognizing my purpose and realizing what I need to do.  And it is the support from this "village" that gives me the strength.  Thank you from the bottom of my heart!

DC

Day 26

Ryan turned 4 today! Many people proudly wore their Ryan Express t-shirts today. We stood out all around my school today and it was awesome to feel that kind of support!

His teachers said he enjoyed his GFCF brownies with his friends at school today. Unfortunately his cough has not improved. We took him to the pediatrician and she said it is croup and put him on a steroid medication.

Phil and I have both noticed that Ryan's memory seems improved. He is singing the words to songs that he was never able to sing before and just in general when we tell him something it doesn't go in one ear and out the other. It's nice to hear him singing songs on the way to or the way home from school!

My brother wanted to take everyone out to dinner tonight. We looked at some of the menus of local restaurants that specifically have GF menu items. We considered Uno's and Bugaboo Creek before settling on Outback Steakhouse. I was a little worried because I knew Ryan would want the french fries, but the menu specifically said that the fries are not GF. I ordered him grilled chicken and asked the waitress about the fries. She assured us that they are indeed GF because they will fry them in a separate frier and use oil designated only for GF items. So we ordered the fries (to be honest I was going to order them anyways). There was no way we were going to get him to understand why the rest of the kids were eating fries and he wasn't. All 9 of us were wearing our Ryan Express t-shirts and several employees and patrons asked us about them. I took several pictures and will post them on The Ryan Express Facebook page.

DC

Day 25

The GFCF brownies are in the oven cooking. We're sending them to daycare with Ryan so that he can celebrate his birthday with his friends at school. They smell good and I even added some mini chocolate chips (GFCF chocolate chips, of course).

Ryan did well taking his medicine tonight. He's developed a routine already. He has to sit in one particular spot on the kitchen counter. And he must take it in a syringe with me holding his chin. And after each small push of the syringe he swallows, takes a sip of water, and then continues to take the medicine. I tried to give it to him tonight in the opening between our family room and kitchen so that he could continue watching a show (another bedtime ritual) but he said, "No mama, I have to take it here" and he proceeded into the kitchen to his spot at the counter, where I had to hoist him up.

And we were able to get a third day of stool samples. We packaged everything up according to the directions, and FedEx is picking up the box tomorrow. I was getting nervous that we weren't going to get the third sample, and the lab has to receive it within five days of the first sample. So tonight was our last chance, and he pulled through for us! What a good boy!

Tomorrow is Ryan's birthday; 4 years old! Many friends and family members will be wearing our official t-shirt of The Ryan Express.

DC