Week 141

Christmas!  It finally arrived and Ryan could not have been happier.  He was so excited for the day that we had to tell him to not come out of his room until 6:00 AM and he had to come get us first.  Santa does not wrap his big gift and we wanted to catch the look of surprise on their faces when they came down the stairs. The big gift this year was a Nintendo DS.  They have been asking for a DS since the summer and Santa brought them one.  They were both thrilled.

However, with the holidays came lots of non-gluten free food.  It is tough to keep Ryan on a schedule and his diet with the long break.  He cheated a lot on his diet and we paid for it.  His behavior was extremely wild.  As a result of his wildness, his play became very rough.  He almost sent Dawn to the emergency room when he crashed into her knee.  He did not mean to hurt Dawn he was just so wild and rough he hyper- extended her knee.  Dawn ended up spending the majority of the morning on the couch icing her knee.  We also had to be on alert every time Ryan was near Jack.  Ryan just wanted to play with him but his play was so rough we had to be watchful and constantly remind Ryan to calm down.

We took the kids to the dentist this week and Ryan has four cavities.  We were shocked.  Ryan is so diligent at brushing his teeth and his diet is normally very good.  What we came to realize is that a great deal of the GF/CF food is high in sugar.  This is added to make the foods taste better and is something that we were not careful of watching with him.  So now we are being mindful of the sugar intake and also flossing is now recommended to help make sure he does not have any further cavities.

We also had an appointment with Dr. Cowan.  Ryan has not been to him in over a year and the doctor was surprised to see how far Ryan has come in that time.  He made good eye contact with the doctor when he shook his hand to say hello.  When the doctor called him over to the table we were at and it required Ryan to walk away from the train table, he did it without complaint.  Ryan even read for Dr. Cowan.  When the doctor stopped him half way through Ryan asked if he could finish reading the book to us.  Ryan sat down at the table with us and read the rest of the story.  Dr. Cowan was very impressed and was happy with his progress.

One area that Dr. Cowan wants us to focus on is labeling Ryan's emotions when he is having that emotion.  For example, when he is bored, he wants us to tell Ryan that this is what bored feels like and move on.  He feels that we need to help Ryan recognize his own emotions before he will be able to recognize those emotions in others. The other area is to start Ryan on a Phonics reading program.  Ryan is too literal in his letters and does not know the sounds that the letters make, especially when they are put together.  For example, sh.  Ryan reads the s sound and then the h sound.  He does not see them as one sound together.  He is doing much better with his reading but he is a little behind and we are afraid that the gap is only going to get bigger as the years progress.   Overall, it was a very good appointment.

We sometimes forget how far Ryan has come and it is nice to see others recognize that progress.  Through all the struggles that we have had with Ryan over the past three years, we sometimes forget to stop and take a look at how far he has come. One of the biggest reasons for Ryan's success is Dawn.  She has put so much time and effort into helping him that I do not know how she has the energy to keep going.  I know of many people that would have accepted the first neurologist's suggestion and brought their 3 year old to a pediatric psychiatrist to have them put them on medication.  I hope someday Ryan will realize just how much his mom has done for him and how much Dawn loves him.    

Pajama Day

Baking cookies for Santa

Christmas Eve with cousins

Christmas Eve with Nonna and Papa

Up at the crack of Dawn on Christmas morning.  So excited to play with his new DS from Santa!

A visit from Santa on Christmas Day.  He brought gifts for all of the kids, and Jack got his two bottom teeth!

Nonna replaced the ornament that Ryan broke a few weeks back.  He was so happy.

A basketball hoop from Uncle T!

Lots of outdoor play in the snow this week!

Wishing all of you a Happy and Healthy New Year.

PC

Week 90

We have been so busy the last few weeks.  We have had a lot going on and the blog has taken a back seat.  But we are back and have some updates for you.

Just after our last blog entry, Ryan was retested for speech. This was something that he received 3 times a week last year but our current school district cut it out of his IEP.  Now they are telling us that they noticed that Ryan had some speech delays and they wanted to get him tested.  This is something that made us both angry, because we fought to get him speech this year but they refused.  Now they are telling us, as if we did not notice, that Ryan was behind in his speech and that he needs to be tested.  He could have been receiving speech services these past five months if they listened to us back in May.  But he was tested and we have a meeting next week to set up his speech services for help with pragmatics and language.

Ryan had a lot of fun this Christmas.  This year we had Christmas Eve, Christmas Day, and the day after Christmas all at our house.  We had a lot of company visit and Ryan had a great time playing with his cousins.

His large gift from Santa was a Lego table which he sits at almost every day and plays.

While everyone was having a great time, this was the start of Phil's medical problems.  Phil had to be rushed to the ER for kidney stones on Christmas morning, right in the middle of us opening gifts.  He was in the ER for over 4 hours.

New Years Eve we spent at Dawn's parents' with Uncle T, Auntie B, Amelia, and Alyssa.  The kids had a great time staying up to watch the ball drop and ring in the new year.  It was another exciting time with the cousins and Ryan had a lot of fun learning how to play pool with Papa.

Pillow fight with Amelia

Happy New Year!

Ryan displayed good patience learning from papa how to hit the ball.

After the New Year, Phil had his kidney stone blasted.  He had so many complications with this procedure that he ended up back in the ER three more times in four days, and finally had to be admitted to the hospital for emergency surgery to remove the stones and drain the infection out of his kidney. This surgery was supposed to be a simple, in and out procedure, but since nothing with these kidney stones had been simple so far, neither was this.  Some complications arose and he spent two nights in the hospital.  He was discharged today (Sunday, January 8, 2012) and both kids were very happy to see him (and mommy too!)

The break from school during the holidays, and constant change in care givers as we spent so much time back and forth in the hospital this week, threw Ryan's schedule off tremendously.  He did not want to go back to school after a week and a half of vacation and gave us a real difficult time getting ready in the morning.  He does not want to do his class work and even forgot to bring his backpack to school one day.  He's also giving us a difficult time about writing his last name and doing homework.  He seems a bit depressed about going to school, and we'll be discussing this further during his CSE meeting at school next week.  Hopefully with everyone getting back to a regular schedule Ryan will settle back into his normal routine.

Although it doesn't seem like we've had the best of starts to the new year, we do have a lot to look forward to this year!!!

12 weeks

We hope that everyone had a wonderful Holiday Season and we wish you a very Happy New Year.

PC and DC

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