Week 20

Ryan received two more B-12 injections this week. The first one went very similar to the one we did last Sunday. He was awake and Phil had to hold him down. It was a high anxiety moment for all of us, including Julia who witnessed this for the first time and covered her ears during the entire process. In hindsight, we should have put her to bed before giving the injection.

For his second injection, we told him on Sunday that he needed to have his medicine in his arm.  We were leaving for a BBQ and then going straight to Playland.  We didn't want to upset him before we left so we resorted to the fact that we would have to do it late at night after we returned from Playland.  To our surprise, Ryan went to the refridgerator and told us he wanted to take the needle out of the bag.  We took it out and then he said that he didn't want us to hold him, and he wanted to sit on the stairs to get it.  We were both in shock.  I was reluctant because this was a surprise to us and we hadn't applied the numbing cream.  I knew this injection would hurt Ryan more than the others, and we've already seen what happens.  But Phil insisted that we take advantage of this window of opportunity.  Phil sat next to Ryan and held his arm in a way that Ryan didn't feel he was restraining him, but if he tried to jerk his arm during the injection he could restrain him.  Ryan was so brave as he watched me do it without moving.  He screamed that it hurt and he cried afterwards.  But he knew we had fun places to go so he didn't run upstairs to sulk.  He accepted the treat that we had waiting for him and we left the house.

Ryan has been producing some wonderful speech lately. His dialogue and conversations are more in-depth and high-functioning than they have ever been before. During the week Julia received a package in the mail with a doll house from Phil's sister. Both kids were thrilled! They spent hours this week playing (nicely!) with the doll house. It was nice to see them get along and be creative with their pretend play scenarios. At one point I heard Ryan saying, "Mommy, mommy..." and I answered him. He then said, "No, I'm talking about this mommy", holding up the mother figure that goes with the doll house. From that point on, he has been referring to the mother as "pretend mommy". It is cute to see him take the baby and say, "Pretend mommy, I need sunscreen." We feel this is unchartered cognitive and pragmatic development for Ryan and it is exciting.

It's nice to see and recognize improvements. I know we've mentioned before that living day-to-day it is not always so easy to see the improvements and it can get discouraging. But when others haven't seen him in a while the changes are more noticeable. Case in point: Ryan began transitioning back to daycare this week. He spent half the day on Wednesday and a full day on Thursday. The director who has known Ryan for two years now, but has not seen him since June, was very impressed with his accomplishments. She said he seemed much calmer and was able to stay focused and on-task for longer times with activities that would have normally frustrated him. At first I was worried that Ryan wouldn't want to be there, especially walking in with new faces (both kids and teachers) in the room. "Old" Ryan would have had a meltdown. He would have held on to my leg and hide from everyone. He would have been angered and upset when I left. He was shy and stood close to me walking in on Wednesday morning, but after a minute he sat down to eat his breakfast after giving me a hug and kiss goodbye. At the end of the day I was pleased to hear that he adjusted well and followed the routine as if he never left in June. The kids were happy to see him and he did a great job socializing with old and new friends.

We tried entering a new supplement on his list this week: sulfur powder. It has a strong, distinct, and unpleasant taste. It changes the taste of the food it is mixed with and I couldn't even force myself to eat it. I don't know how we are going to get him to eat it. Anyone out there who has experience taking sulfur powder??? So we skipped over the sulfur powder for now. He has an appointment with Dr. Bock next week and I've put it in my notes to discuss with him.

On the diet front, we'll be back to doing a lot of prep the evening before for the next day at school and daycare. Ryan will need to bring a lunchbox with prepared GFCF food for daycare and the same for his 5 hour preschool program at PARC. And we will have to rely on his daycare teacher to make sure he gets on the bus with what he needs for PARC. More next week on the beginning of the school year and what we have put into place to make the whole process easier for us and his teachers.

Speaking of PARC, Ryan had his orientation this week. There were a lot of parents and students in the room since there was one orientation for the morning students, afternoon students, partial week students, and full day/full week students (like Ryan). It was loud and chaotic.  He wouldn't walk in the room and Phil had to carry him and hold him for a little while. And even after he put him down, he stuck to us like glue for about 15 minutes. But then he warmed up and ran off to play with the toys in the room while his teachers spoke to the group. In fact, at the end of the hour, he was having such a good time playing that he was reluctant to leave. His teachers were nice and seemed very understanding and accomodating to Ryan's needs. He is in an inclusion class with approximately 12 mainstream children and 6 special education children. It is called SCIS for Special Class Integrated Setting.

Ryan met Olivia this weekend.  Olivia's sister turned 5 and we were at their house celebrating.  I brought a special cupcake for Ryan and he wasn't upset that he couldn't have what the other kids were having.  While Julia ran around playing with all of the kids, Ryan was content sitting and watching The Wonder Pets with Olivia and playing trains either by himself or with Olivia's brother.  There were a lot of people there that he didn't know and we were proud that he behaved well and didn't have any meltdowns.  It was windy out and Ryan kept saying he was scared because a tornado was coming. 

Here's a nice family shot of Olivia with her family.  After we sung Happy Birthday to Juliana we sang Happy Birthday to Olivia who turns one and a half this month.

Ryan had a great time at Playland.  He loved the rides; the faster the better.  He went on a mini roller coaster with his cousin Amelia and he loved the ferris wheel.  We stuck to the kiddie rides area for the most part and played a few games at the end of the night.  He got very wild at the end of the night.  I don't know if it was from the excitement and adrenaline, or the non GFCF chicken nuggets and cookie he had that afternoon. I'll end with some pictures of our afternoon/evening at Playland.

DC

Week 16

Methyl-B-12 Injection

Methyl-B-12, a special form of vitamin B-12, also known as methylcobalamin, is a nutrient that boosts methylation.  Methylation is essentially the process of flushing toxins (mercury and toxins found in foods and the environment) from our system.  According to Dr. Bock, Methyl-B-12 can help the body get rid of toxins, including mercury, which is often the toxin that disrupted the methylation process in the first place.  In addition to assisting in detoxification, other benefits include improving cell membrane function, neurotransmitter and hormone metabolism, and neuronal healing.

On Friday, Ryan received his first injection (500 mcg) of Methyl-B-12.  Phil and I joked afterwards that we should have taken a picture to post here, but at the time we were consumed with so many things that the thought hadn't crossed our minds.  We first wanted to try the injection while Ryan was awake.  We applied the numbing cream in a small area above his buttocks and waited an hour for it to 'kick in'.  Ryan was fine with me putting on the cream and the bandaid to cover it.  He was NOT fine when I approached him with the needle.  We tried distracting him with a TV show and a lollipop, but he was very anxious and knew we were up to something.  So we decided to wait until he fell asleep.  Just before he went to bed we reapplied some numbing cream to be sure his skin would stay numb in case the first dose wore off by the time he fell into a deep sleep.

I reread my notes and instructions from the training and headed up to his room at about 10 pm.  He was fast asleep and Phil was able to roll him over to the side the cream was applied to.  I was extremely nervous that I would do something wrong.  The good thing is... the needle is very tiny and when inserting it on an angle there's no way you can penetrate too deep.  The bad thing... the needle is very tiny and my biggest fear was that I would break it in his skin during the process.  I worked myself up into a nervous wreck, but Phil calmed me down, and I administered it just fine.  The process was over in less than three seconds.  He didn't feel a thing, or at least we don't think he did, because he didn't budge from his sleep at all.  Now that I know what to expect, subsequent doses should go more smoothly.  His next dose is scheduled for Monday night, and this time it is 1000 mcg.  Once we observe him with that we'll call the doctor's office to let them know how things went with both doses and they will call in 10 more needles.

Ryan did great on Saturday, the day after the injection.  We were out of the house for over 12 hours with different activities that we had planned.  We met a friend at 10 am in Brookfield, CT.  Ryan and Julia jumped and slid down slides in inflatable castles for about 2 hours, we did some shopping, we went out to Applebees for lunch, and visited the Danbury Railroad Museum all before 4 pm.  On our way back home we were invited by friends to take the kids swimming in their pool, and we stayed there for dinner and dessert as well.  They had purchased a variety of foods that Ryan could eat and we had a lovely evening.  There were several preteens and college kids there and they were a big help keeping the kids busy.  Ryan was interactive with the children and the adults and did a good job transitioning from one activity to the next. 

I wish I could say the same for today.  We stayed home today and that may have been part of the problem.  He seemed to get into a rut.  He was very aggressive and physical with both me and Julia, and had several  major meltdowns throughout the day.  His OCD was also very active.  I did a heavy duty clean up in his room and he became very upset that his things were out of place.  He also seemed restless.  We brought the kids outside to play and he was all over the place.  He played with something for about 2 minutes and then moved on to the next thing.  Nothing seemed to keep his interest and he was very distractible.  But by the end of the night he was much calmer and he went to bed happy.

I'm not sure what part the injection played in the behaviors displayed on Saturday and Sunday but I guess time will tell once we get on a schedule with administering them.

Here are some pictures from our long Saturday filled with activities:

An update on the karate... on Thursday Ryan had a playdate with a little boy down the road.  His mom and I were talking about karate places in the area.  Ryan was in earshot of us. When the little boy left, Ryan told me he wanted to go to karate. I was so excited.  We got in the car and headed over.  He fell asleep on the way there so I had to wake him up when we arrived.  To our disappointment, the place was closed because the owners were on vacation!  We'll try again next week.

DC