Week 105

April 17th marked an important anniversary for us.  Yes it was my brother's and sister-in-law's anniversary, but they are sharing their day with another event as well.  It is the 2 year anniversary of Ryan starting the GFCF diet.  We feel this is a huge milestone.  When we began we had short-term goals in mind.  Never did we think we'd last a year, let alone 2 years!  Each time we try to deviate from the diet the results bring us right back on track.  There are times when Ryan has to "cheat", sometimes several times a week, and we pay for it afterwards.  It seems his skin is paying for it as well lately as the smooth, soft skin he had a few months ago has been replaced with patches of rough, itchy, blotches.  I have to admit, we've gotten a bit lazy.  We no longer bring his food with us when we go to parties, or at least to the extent that we used to.  We let him have what is there.  He's even more inclined to cheat lately.  He recognizes the difference in taste and sacrifices the way he is going to feel the next day, to enjoy living in the moment.  He also knows exactly what to say to avoid an argument with us... smart little munchkin! Ryan: "It's not gluten-free, so I'm just going to have one, okay?"

Our goddaughter Amelia made her First Holy Communion this weekend.  Here are some pictures of the special day:

On the 17th this week I had a follow up appointment with the specialist to look at the baby's heart and bowels.  The baby is growing beautifully and perfectly on track.  He/she is at 2 pounds 1 ounce.  The bowels and entire digestive system seems to be working normally.  I was there for over an hour and the entire consumption/elimination process was witnessed.  But there are still some spots on the small intestine that will keep me going back to see this specialist, at least for one more follow up before the baby is born.  It may be signs of an infection, but the bowels are so small it is difficult to tell.  So she wants to keep monitoring that section and the baby's growth, and it is suggested the baby gets an x-ray after birth.  If there is a problem with that section, there is plenty of small bowels compared to large bowels, so it is the easier of the two to perform surgery on.

Pictures from Ryan's soccer game this week: 

There is a noticeable improvement from the fall season to the spring season, and Ryan seems to be enjoying himself more.  Although he's had 2 games and hasn't scored a goal, he remains positive.  He's scored goals in his scrimmage matches and he just seems to be happy to be doing something different.

We received Ryan's Quarter 3 report card this week.  He received 2's (Developing Skills to Meet the Standards) and 3's (Meets the Standards) in most areas.  Under the responsibilities, he scored "Needs Improvement" in two areas:  Engages in activities, and Demonstrates self-control.  Here are the comments from his Kindergarten teacher and his P.E. teacher: 

Perfect attendance so far...impressive!!!

His list of speech and language goals also arrived and 8 of the 10 are "progressing gradually", meaning he may or may not meet this goal by the target date, and the other 2 are "progressing satisfactorily" meaning he is on track to meet the goal by the target date.  I think we would have seen much different progress had Ryan continued speech services from last school year into this school year.  His S&L remained stagnant and did not improve enough on its own compared to his increase in age.  His annual review is coming up in May so at least we have proof that he needs the help and needs to continue to receive services in first grade.  We did get a call from the school and they are going to recommend the inclusion program for 1st grade.  This is what we expected him to receive this year, but they did not have this program at the kindergarten level at our particular elementary school and we opted to have a shared aide for Ryan rather than bus him to a different elementary school.   His teacher feels he needs more support than he is receiving from the aide in the regular classroom.  With the inclusion program, he will be in an integrated setting (both regular and special education students) and receive the support from a special education teacher and teacher assistant, as well as the regular ed teacher in the room. 

In the mail this week we received a framed puzzle of a picture from last year's walk.  Ryan, and Julia, immediately noticed that one of the pieces was missing.  We tried explaining to them the symbolism and meaning behind the missing piece.  The company taped the missing piece behind the frame.  Phil seems to think it is there in case you couldn't "handle" not having a piece missing you could fill it in.  I like to think it is taped there in hopes that we can complete the puzzle one day when the mystery of Autism is solved and a cure is discovered. 

Ryan knew that this said "The Ryan Express" and "2011".  When I pointed to the $ amount, he said, "That means a lot of money!"

Our team has been established on the official walk site.  If you would like to walk with us on June 3rd, please click the link below to join our team:
The Ryan Express Team Page

DC