Week 17

Ryan was given two injections this week.  One was on Monday for 1000 mcg and the other on Thursday for 1500 mcg.  Administering them were much easier than our first experience.  I was more relaxed.  For the 1500 dose Ryan woke up after I pricked him.  The mark where Phil placed the numbing cream had worn off and we estimated the area, but clearly missed the spot.  He was fine, though, and went right back to sleep without realizing what had happened.  We have one more dose increase to give, 1750 mcg, and then it stays at that for the next several weeks.  We'll give that injection tomorrow night since Ryan isn't home tonight.  He is actually spending the night at my parents' house.  It is a nice break for Phil and I, and the kids love it there.  There are tons of things to do, and they are in their glory.  It's also a good opportunity for us to let someone else give him his meds and "learn the ropes" since we can't be with him 24/7 and there are times we will not be here and someone else will need to know what works best. 

Ryan had a great week, for the most part.  There were some downs but they were minor compared to what we would experience 6 months ago.  And most of his downs were related to Julia.  They do a lot of bickering! 

Friday was his last day of school for the rest of the summer and speech and O/T services finished as well.  He starts up again on 9/7, which seems like a far way off.  I hope he doesn't have a difficult time adjusting.

He has been trying some new foods, and liking them.  Today at my mom's he ate mashed potatoes, something he never used to like, probably because of the texture.  And a few days ago he ate a baked potato.  During the week we broke down and ordered a pizza.  The reality is, there may be times where he is going to have to eat things off of the GFCF diet.  We gave him a Gluten/Casein Enzyme capsule along with the slice of pizza, and he did great with it.  He was SO excited to eat the pizza.  His face lit up.  I hope this decision doesn't confuse him and send mixed signals, but only time will tell and we'll never know unless we try.  The good news is that he didn't get any rash or anything afterwards.  The bad news is, there were some wild and negative behaviors shown the rest of the night.  Was it the pizza, or the fact that he had been with Julia all day and he didn't nap and was tired and cranky? 

On Saturday we celebrated my dad's birthday.  I made a GFCF, egg-free cake.  I used Bob's Red Mill chocolate GFCF cake mix and substitutued flaxseed mill for the eggs.  The batter tasted gross, but the cake turned out pretty good.  The frosting (chocolate for the middle, and vanilla for the top) was made with cocoa, confectioner's sugar, GFCF butter, and rice milk.  And I sprinkled the top with GFCF chocolate chips.  The kids liked it and Ryan asked for a second piece, of course! 

He had a good playdate with his cousins that afternoon and in the morning had a playdate with family friends down in Yorktown. His behavior in the morning was terrific. There were times when he just wanted to play by himself, but he did a great job sharing with the other kids, and when it was time to go he didn't flip out. He gave the toy he was holding back to the little boy without making a scene. He also did a good job with eating just his foods. They had donuts and bagels on the table and he was okay with not eating them. There were other things he could have and he was content.  The little girl at the playdate in the morning is a few months younger than Ryan.  We were all in her room playing and she showed me a notebook with writing inside that she called "her homework".  She had a page full of letters of the alphabet that she was practicing writing.  I was in awe over her penmanship and while it was good to see what a typical four year old's writing should look like, it made me realize just how far behind Ryan is when it comes to writing.  His letters are not legible and on his artwork that he brings home from school the teacher rewrites his name underneath his scribbles probably so that they know who's backpack to put it in.  I try to get him to practice, but it is a task that is difficult for him so he aviods it. 

I spoke with him on the phone this morning and he responded to my questions.  He told me that he loved me and would see me tomorrow.  He's understanding language and situations so much better than he ever did.  While he is still so far behind other kids his age, he is finally starting to close the gap, and we are more hopeful than ever that things will be okay.

DC