Week 21

This week was a week of transitions.  Going back to school was a challenge.  At Ryan's new school we now have to supply him with lunch everyday.  At his previous school, lunch was provided.  The only good thing about the lunch situation is that in his program there are only a few students eating lunch there and they can be very accommodating.  We even bought them a toaster so they can toast Ryan's bread for him.  We also tried a new bread this week, yeast free white bread.  Ryan did not like it.  He ate the cold cuts and left the bread.  We tried it and it tastes terrible!

We have the transportation situation almost worked out.  Dutchess County is picking him up at his day care but they are arriving late everyday.  They are sending one bus to do several drop offs and pick ups in the area.  Hopefully this is something that they can work out but it is annoying that they are picking him up right about the time that he is supposed to be starting his program.

We also had an appointment with Dr. Bock this week, of course the evening of the first day of school.  Ryan did great at the appointment.  He was a little shy but we attributed this to the fact that it was almost 7:00 PM at night when we finally got in to see him.  Ryan's Grandmother was able to make this appointment with us and it was a good thing.  We had to bring Julia with us and the two of them together, that late at night is just asking for trouble.  Dr. Bock was pleased with Ryan's progress but we found out that he wanted Ryan to continue the Nystatin from the summer.  There was a misunderstanding from the last appointment and now he is re-taking this Nystatin three times a day.  He did not add anything new but wants us to see how Ryan does with his new school before he prescribes something to help with his writing skills.  This is something that Ryan does not like to do and avoids as much as possible. 

We still have to give him his injections and this has been a struggle this week.  Dr. Bock wants us to give it to him in the butt and not the arm.  However, Ryan is not happy with this new change and he fought us most of the week getting his second injection of the week. I had to finally hold him down and Dawn had to inject him.  As I was holding Ryan he kept repeating "I'm OK, I'm OK" to help him relax. Once it was over he was very upset and went up to his room.  He gets himself so worked up that it is difficult to get him to calm down to give him the shot.  Hopefully this is something that improves over time.

We also started a new supplement this week.  It is a magnesium sulfate cream.  We noticed after a few days that he smelled like rotten eggs.  We thought that he was just that stinky and needed a bath.  But after his bath we noticed that he still had the same smell.  We finally figured out that the sulfur was coming out of his pores and that was the smell.  Thank goodness that the smell went away and even though we are still using the cream there have been no other incidents from him smelling like rotten eggs.  

We also found, actually Dawn's mother found a brand of cookie that both Julia and Ryan love.  It is called Lucy's Sugar cookies.  It has gluten free oats, and no dairy, eggs, nuts, or gluten.  However, it does have soy as one of its ingredients.  We will have to investigate this brand to see if they have other cookies and if it is something that one of the stores near us carry.

One interesting note to be aware of this week was that Ryan is still a little boy that is very rigid in his patterns.  His new school was closed for the Jewish holidays and he stayed at his day care facility for the two days.  On the first day he did not eat his lunch because he was supposed to have it at his new school.  No amount of convincing from the teachers would get him to change his mind.  He had the sandwich on the ride home with Dawn.  We told him that he was to eat his lunch at his day care facility the next day and he had no problems.  It is something that we still have to think about whenever his schedule changes.

PC