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

Week 15

Self-confidence

It wasn't until this week that I saw a side of Ryan where self-confidence was nonexistent.  In my mind he is always the kid trying out new things and being a dare-devil, especially during physical "rough-housing" activities.  The faster the movement, the more Ryan likes it. 

He was invited on a play date to a local park.  He had no fear on the playground as he climbed all over the place.  He even climbed up sides of the equipment that weren't meant for climbing.  He tried the monkey bars several times, but was unsuccessful.  It didn't seem to bother him and he moved on to his next quest.  It got me thinking that it would be great for Ryan to have something all year round enabling him to exert energy but also develop some focus and self control.  I thought, "What activity could do that better than karate?"

I was very excited with the thought of introducing him to the art of karate.  I brought him to a place that offers karate classes to children Ryan's age.  We were in luck... there was a 3-5 year old class going on at that moment and a second one was going to start in 10 minutes.  I signed Ryan up for a two-week trial and let him observe the class going on.  He watched the kids through the waiting room window and seemed somewhat interested in what they were doing.  I was surprised that he wasn't begging me to allow him to run into the room and join in.  When the class was finished the children waiting in the room lined up to go in for their class.  I told Ryan he could join that class but he didn't want to.  He watched them do warm-ups and some simple stretching activities.  One of the instructors encouraged Ryan to join them several times, as did I, but Ryan's response was to put his head down and say "it's too hard" and "I can't do that". 

I had never seen this side of Ryan.  Physical activities, especially involving gross motor skills, have always been his strong suit.  It was very discouraging and it made me extremely sad to see him that way and to hear the words he was saying.  I think it made other parents in the waiting room sad to see Ryan this way too, and a couple of people sent their children over to Ryan to talk to him about some of the things they do in their karate class. 

Needless to say we left the building without Ryan ever stepping foot into the gym area.  Maybe Ryan was having an off day and he'll want to try it next time.  I will definitely bring him back another day to try again. 

On another note, we had a fairly good week regarding food, supplements, and medicine.  Ryan finished the Gentamycin and is doing well with the Nystatin.  He'll be ready for the B12 injections next week.  We added a new supplement on the list... Iodine.  Within 2 hours of him taking the first dose he was "off the wall".  He was cranky and irritable and not at all himself.  We chalked it up to the introduction of a new supplement and hoped for different results the next time.  And the next day he took the Iodine and was fine with it.  I'm embarrassed to say that I don't know why the Iodine was suggested by Dr. Bock.  He may have mentioned why but I don't remember.  I did a quick search online but wasn't able to make a clear cut connection.  And I tried looking over his lab results but it's all "Chinese" to me. 

We need to get Ryan an appointment with his ENT for a check up with the tubes in his ears.  They may need to be surgically removed since they have not fallen out on their own yet.  Also, Ryan's speech therapist mentioned something about the nasal area and is writing a note for us to share with the ENT at our next appointment.

DC

Week 14

New Supplements and Medicine

Dawn decided that the huge amount of supplements that we were given at our last Dr. Bock visit was too much to handle at once. So she decided to organize and now we have a spreadsheet that we use to keep track of the 20 or so different supplements and the two different prescription medicines that he is now on.

We have him taking a full teaspoon of  Nystatin 3 times a day now and one teaspoon of Gentamycin three times a day to counter the bacteria found in his blood work from our first Dr. Bock visit.  We are also adding several drops of Liquid Molybdenum to his food to help with Iron deficiencies and other cellular issues also found in the blood work.

In addition Ryan's behavior has been excellent this week.  Whatever the issues were with our trip to Virginia seem to have worked out.  He did great and his speech is really improving.  We went over to a neighbor's house to use the pool and they even noticed that he was talking more and that his articulation was much clearer.  He was making eye contact and was engaging them in conversation.  He thanked them for using the pool and for the food that they brought out.   These are the first people that we had met when we moved in to our house and they have watched Ryan and Julia grow up.  We went to a small family BBQ that they had last night and he was great in the pool.  He swam over to them and talked a little while with them and their relatives.  He gave them high fives good bye and swam away.  It was a real good week.

We also took a one day mini vacation with Nonna, Tommy, and the girls to the Great Wolf Lodge in Pennsylvania.  It is an indoor water park in the Pocono Mountains.  They all had a blast.  We all were able to stay in the same suite and Ryan did fantastic with the whole event.  The water park had water spraying from all different directions from several of the climbing areas and he did really well.  It took him a little time to get used to it and had did have trouble with his sensory issues with the water spraying into his face and the noise.  But after a few hours he was able to walk through the spray. 

He also loved the tube rides in the park. It was a huge climb to the top of a tower and then ride into dark tubes into a pool of water. He loved it! At first he wanted to go on the ride with Dawn or myself, but then he saw Amelia go by herself and then he wanted to go by himself all the time. It was a little scary for us to watch him go off into the dark tubes alone at four years old but he had no fear.

He had such a great time that after the first day he fell asleep at dinner.

Food was not a problem at the place.  We asked our waitress about different food options and she got one of the chefs to come out to meet with us.  He was able to make some chicken for him and cut up some potatoes to make fries for him.  They were very accommodating and there was never a problem.  The place had refrigerators in the rooms and we were able to keep Ryan's medicine cold.  He was also great at taking the medicine at the lodge as well.  Granted the medicine tastes like candy and it does not have too bad of an after taste.  It tastes a lot better then the oils that we have to given him! 

On the last day that we are at the lodge Dawn met a couple that had two little boys (four and five years old) that were also Autistic.  However, they were much further down on the spectrum to the point that they were non-verbal.  Dawn starting talking to them and they were taking their boys to a hospital for OT, Speech, and PT several times a week.  We found that they were not on the diet, they had never taken her boys to a DAN! doctor, and were surprised at all the tests that Ryan had from Dr. Bock.  It was a short conversation as her boys were running away.  Hopefully Dawn gave them some ideas and a different point of view.

Also this week, Papa made a spinning board for Ryan to use.  His OT person, Ms. Mary, uses this spinning board with Ryan and Dawn took the measurements of the board the she uses.  She sent them to her father and he made a board for him.  Both Julia and Ryan sit and spin on this board all the time.  It is to help with the fluid in his inner ear that helps with sensory issues.  He is to sit and spin ten times in both directions, then lay down on the board with his cheek on the board and spin in both directions again.  Dawn looked up this board on the internet and it was over $150 dollars!  Hopefully having the board in the house all the time will help.

PC