The Week of Celebrating Birthdays
Amongst our usual routine, we celebrated three birthdays in the family this week. First we took Phil's mom to Olive Garden for her birthday. We looked ahead at their menu to make sure there would be items for Ryan to eat and there were. The waiter wasn't familiar at all with the GF options and he had to come back to our table three times to clarify Ryan's order and give us information about that part of the menu and how the food was packaged, but it all ended up working out okay. He had the GF pasta (he had it with marinara sauce because it comes prepackaged like that) and it was very tasty. They also made him grilled chicken on the side. There wasn't anything on the dessert menu for him, and I really didn't expect there to be.
Ryan's behavior was very silly for the most part with some periods of defiance. We're not sure if his refusal to go to the bathroom for the previous 8 hours had anything to do with his behavior. He went almost 12 hours without using the bathroom, and it's not like he didn't drink all day. This is typical for Ryan (not 12 hours) but often he will go 7 or 8 hours without going to the bathroom. He holds it in as long as he can. I'm not sure if it's because he doesn't want to stop what he's doing or because he likes to be in control and doesn't want people to tell him when to go. Here's a picture of Ryan with Grandma Campbell. We took several pictures but he was silly for each one of them.
The next birthday party was Ryan's cousin, Amelia. It was held at Animal Kingdom. They spent the first hour taking a tour of the pet store, stopping at various sections to learn about the animals and touch them. Ryan stayed with the group for a little while and then got bored. He hung out with Phil, but was sure to hop back into the kids' line when they got up and moved from one section to the next.
During the week we found out that pizza would be served. I called the pizza place ahead of time and they were able to make a GFCF pizza with a day notice. It was a little personal pizza and Ryan was very excited when he saw it. He didn't even look at what the other kids were eating. The pizza looked great, smelled delicous, and tasted yummy. I was skeptical however, because the cheese tasted like regular mozzarella. I called the pizzeria afterwards to thank the manager for make the special pizza and they confirmed that the pizza was only GF. There was a mixup with the order and they didn't use the vegan cheese. No wonder it tasted so good! But I would still order from there again and let him try out the true GFCF one next time. Here's a picture of the pizza; he had two slices at the party, two when he got home that night, and the remaining two the next day. On the way home he was very protective of the pizza and he wanted to make sure the last two pieces were put away in the fridge so he could eat them the next day. 
I also included a picture of him eating the pizza at the party... he's been making a lot of different faces lately!
I also called the bakery to find out what kind of cake was being served. It was yellow cake with strawberry filling and whipped cream on top. I made Ryan a GFCF yellow cupcake with vanilla frosting. Then I cut some strawberries and put them on top and Ryan ate this while cake was being served. I used the Cherrybrook Farm yellow cake mix in a box because it is an eggless recipe. I didn't think it tasted as good as the Bob's Red Mill cake mix I used for my dad's cake last week. Although Bob's isn't eggless, I used the flaxseed mill to replace the eggs. But I was glad that Ryan liked it (or at least tolerated it) because I was going to serve the rest of the cupcakes the next day at Julia's birthday party. Phil agreed with me on the taste, and my nieces did too. They ate my dad's cake last week without a problem, but they only ate one bite of these cupcakes at Julia's party and asked for a piece of cake. Note to self... make another batch of cupcakes with the Bob's Red Mill mix, and freeze them for times that Ryan will need to bring a special treat to school during the year.
During Julia's party, Ryan was on the quiet side and kept to himself. He did spend some time watching the girls play with Julia's new video karaoke machine but I could tell he was really tired and was feeling a bit overwhelmed. During dinner he spilled a little bit of his drink on his shorts, and that did it. He went upstairs to change his clothes (because he dislikes having wet clothing touch his body) and he layed down in bed. He stayed there the remainder of the night until the next morning. We tried waking him up to come down and sing Happy Birthday, but he was cranky and refused. He went right back to sleep. He woke up this morning, went downstairs, and asked, "What happened to the party?"
Here are a couple of pictures from the party. We took a family photo but Ryan seemed very distracted with everything going on around him. He participated in the karaoke for a little while but had more fun watching the girls.
During the week I heard from a lot of people who read last week's blog about Olivia. Everyone was touched reading her story, and yet still touched base with us about Ryan and lended their support. Here is a clip from an email I received from one of my college friends... "Your post this week on the blog is beautiful...heart-wrenching and heart-felt. Cut yourself some slack, though, my friend. You have every reason to have a broken heart over the issues your son is dealing with. That doesn't mean you're not empathetic to everyone else's problems....but you have the right to feel whatever emotions you need to when it comes to your family, too." Well said! We continue to receive help, and emotional and financial support from our family and friends, and are grateful. It is this support that helps get us through.
Just this morning we had to try something different giving Ryan his B12 injection. During the past week we've had a lot of difficulty giving Ryan his shots. He used to be nonresponsive in bed. We were able to roll him over, remove clothing, wipe his skin with the alcohol wipe, and insert the needle without any movement from him. Now we can barely touch his clothing without him rolling all over the place, swatting his arms out at us, and scratching his skin profusely. I don't know what changed during the past week, but we've been stressed out trying each night, several times a night, without success, to inject him. So this morning Phil convinced me that we had to try while he was awake. We put a bandaid on his arm with numbing cream, and then an hour later, out came the needle. I won't get into the details because after last week's emotional blog entry I figured I would make this one 'tear-free'. But I can tell you that it was an awful experience for all three of us and the stress I felt seeing and experiencing his anxiety during that five minutes lasted for hours afterwards. I'm not sure who cried more, Ryan or me.
Can these injections possibly be worth it? Well I can say that Ryan had a wonderful day. We spent the day up at my parent's house. He was friendly with strangers, he ate well, he did a great job in the pool, and he spent over an hour doing fine motor skill activities with ease and without frustration. In the pool Julia was being her usual self and Ryan told her that he would stop being mad at her if she "calmed down and took deep breaths". Impressive! So are they worth it? Are the injections helping Ryan on his road to recovery? I don't know. We'll never know exactly what it is that is helping the most; maybe it is the combination of treatments, and if so I don't want to take the injections away. Only God knows and I have faith that he will give us the strength we need to find a way to continue what we are doing.
DC
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