Week 23

It was a very up and down week.  After lots of company last weekend, Ryan came down with a high fever on Monday evening.  In hindsight we should have noticed.  He was just sitting calmly on the couch while we were at his cousins' Birthday party.  We believe that he got it from Julia who also had a high fever the weekend before.  He was so sick that on Tuesday he just sat on the couch and watched TV.  Watching TV is never a passive activity with Ryan but this time he just sat there watching.  After a few days he was back top his normal self.

The rest of the week was very positive.  He was interacting with everyone and even came home singing America the Beautiful.  At his new school they start every day with the pledge and this song.  It was too funny hearing him sing this song.  We feel that he has gotten more out of this school in a few weeks then he did at his last school. 

 We are still having an issue with his injections.  While they have gotten so much better over the past month it is still a struggle with him.  He gets himself so worked up that he has a mini-panic attack.  He freaks himself out that this has become a 20 minute ordeal to do a quick 15 second injection.  Tonight I ended up having to hold him down to have Dawn give him the injection.  This just adds too much stress for us every three days.  We know that it is good for him and that these injections are working but it is a very stressful way to start the week.


Hopefully we will have better luck with the injections in the near future.


PC

Week 22

My life...

Hi.  My name is Ryan.  I am four.  I live in mommy's and daddy's house with my sister Julia and Helen the cat.  It's dark out but daddy is in my room telling me it's time to get up for school.  I argue my case that the sun isn't up yet, but daddy says something like, "That never stops you from waking up early on the weekends." and makes me get out of bed.  The next 20 minutes is a frantic rush around the house.  Well not by me but mommy and daddy are running around.  They let me watch a show on TV while daddy dresses me.  In the background I can hear mommy chasing Julia around the house.  Julia is crying because she wants to wear a dress and sandals to school and mommy is making her wear pants and sneakers.  When daddy is done dressing me he gives me my peanut butter sandwich.  It tastes dry but I'm used to it by now.  It takes a while for mommy and daddy to make my sandwich.  They are always mixing things into the peanut butter before they spread it on to my sandwich.  I used to wonder what it was and tried to watch what they were doing, but it doesn't bother me anymore.  I don't like people touching my head, but I let mommy brush my hair because I'm watching a show and I can tolerate her touching me.  And if I run out of the living room away from her, daddy will eventually catch me and do it himself, and I really don't want to run into the kitchen because daddy's oatmeal smells funny.  Julia puts on her own sneakers but I sit there and wait until mommy helps me with mine. She asks me to do them myself, but I don't want to.  They don't feel right when I do them and I don't know which sneaker goes on which foot.  And the velcro strip makes a funny noise that bothers my ears.  Now for the potty.  Julia goes and then it's my turn.  I don't like to go.  I'm busy watching a show and I don't want to stop what I'm doing.  It's a waste of my time.  And I don't like when someone tells me when to go.  I'll go when I'm ready.  But most of the time mommy and daddy insist I go and if I don't mommy gets all frustrated that I won't go and daddy picks me up and brings me to the bathroom.  Then mommy feels bad and bribes me to go.  I go potty and she gives me 3 mini chocolate chips.  Sometimes I don't give in to the bribe and mommy says we're going to be late to school. 

I like to go to school.  It gives me time away from Julia and my teachers pay a lot of attention to me.  I don't like when the kids don't put things where they belong.  And sometimes the other kids play loud and there are a lot of them.  I usually like to play by myself but every once and a while I'll get right into the middle of the kids playing and rough house with the other boys.  Last year before I began my special diet I did a lot of rough housing.  My teacher had a reward chart and whenever our picture reached the top of the chart we got a prize.  One day after mommy picked me up from school she started crying in the car.  She said that she was sad because I was always at the bottom of the chart below the other kids and it made her feel bad.  I don't like to see mommy cry.  It never bothered me that I was at the bottom of the chart but since it made mommy happy when I moved up the chart, I tried my best to be a good boy.  I was so happy the first time I reached the top.  I picked a plastic helicopter out of the prize box and couldn't wait to show mommy when she picked me up. 

I get to have a special snack at school.  All of the kids know that I eat special food and they are not allowed to share their food with me.  Sometimes I see all of the other kids eating something that I'm not allowed to have but I try not to let it bother me.  My special food makes me feel better and helps me be a good boy.  Mommy and daddy like when I'm a good boy; I do too.  I don't like it when mommy cries.  She used to cry a lot when I was being a bad boy at home.  She said I wasn't listening to her.  I was trying to, but it was hard for me to concentrate on what she was saying and sometimes I didn't understand what she wanted.  But now I understand what people are saying for the most part and I like to please my family and my teachers.  I like when they are proud of me.

After morning snack I go with my teacher to wait outside for the bus.  The bus brings me to my new school.  There are lots of kids there and I have four teachers in the classroom.  We do the same routine everyday and it helps me learn the schedule and know what is coming up next.  Sometimes other teachers come in the classroom to get me and bring me back to their office.  One teacher makes me practice things with my hands and the other makes me practice talking.  I don't like to write but I am getting better at it, and maybe it's not so bad after all.  I try to write the letters of my name like the other kids in class.  The teachers and my mommy and daddy are always correcting the way I hold my pencil.  I ask for help because I want them to hold my hand and help me make the letters.  Sometimes they help me but most of the time they make me do it myself.  Lately I've been more willing to write on my own.  At school we made a September calendar and each night I'm supposed to trace the numbers on it.  Once I trace one day's numbers I keep going.  I know I'm only supposed to do one day at a time, but mommy lets me trace as many as I want.

Over the weekend I went pumpkin picking with my daddy, grandma, aunt, and cousins.  Here's me decorating my pumpkin with a silly face and my name.

It was sunny when we went apple and pumpkin picking.  I still like to wear my hat and sunglasses whenever it is sunny and hot out.  I don't like when it's too hot and I don't like when it is too bright out.  I had fun at the orchard, but the high grass and weeds kept rubbing against my legs and that kind of touch on my legs is not a nice feeling. 

At lunch time at school, my bread smells a little different than the bread the other kids are eating, but the other kids didn't get to have Ms. Sue make their special lunch for them.  She uses the toaster that mommy brought in for the classroom to toast my bread.  And then I usually have a sandwich with mustard, turkey, and salami on it.  In the afternoon we have time outside on the playground.  I like running around with the kids on the playground.  I am a good climber and runner and I can keep up with all of the big and strong kids.  Most adults think I'm really 7 years old because I'm just as big as the kids in 2nd grade and I can keep up with them during physical activities.  But then they hear me speak and realize that I'm still just a little kid.  Strangers can't always understand what I am saying, but one of my teachers is helping me to pronounce my sounds better. 

I am not crazy about getting my hair cut.    I only let mommy cut it, and sometimes nonna, nobody else.  Once daddy brought me to a barber shop when he was getting his haircut and wanted me to sit in the chair and get mine done too, but I refused.  I don't want anyone touching my hair with a machine that makes noise, and I don't like when the scissor goes near my ear or when the hair falls in my face.  It tickles me and makes me feel itchy and I really dislike the way it feels.  But this weekend I let mommy cut my hair.  I got a lollipop afterwards.

We had family visit us over the weekend.  We picked up my uncles, who live in California, from the train station.  I so badly wanted to ride the train, but daddy said no and we were taking our uncles back home with us and that was pretty neat so I didn't mind so much that I couldn't ride the train.  I was so excited to have different people in the car with us that I talked to them for most of the trip. 

My cousin, Megan, played with me for most of the day.  There was so much activity in the house that I wanted to be off by myself playing, but Megan joined me.  I guess it was kind of cool to have my younger cousin want to hang out with me.  I didn't even mind sharing my trains with her.  And she doesn't make a lot of noise or tell me how to play so it was okay.  Here's a picture of me and Megan; she was a big part of my week.

We celebrated Megan's birthday and I got to have a special cupcake.  There were balloons and I accidentally let go of my yellow balloon outside and it blew away.  It landed out in the woods.  I wanted daddy to get it for me but he didn't.  Mommy and daddy said that it wasn't a big deal that it was gone because we had other ones in the house.  But that was the only yellow balloon, and it was mine, and I didn't want it to go away.  I didn't get to say goodbye. 

Twice a week daddy puts cream and a bandaid on my bum-bum and then mommy takes a needle out of the refridgerator and puts the medicine in my skin.  They tell me that it helps me and makes me feel better, but I think it hurts.  I do have to admit that I don't really feel the needle going in, but then all of a sudden something starts to burn inside my skin and I cry.  Mommy says I'm so brave but at that moment I don't care.  I run up to my room.  Daddy used to have to hold me down but now I lay down across his lap.  I don't like to do it, but it is better than him holding me down.  I get really scared when he holds me down and I feel like I have to always look over my shoulder because I never know when I'll be grabbed and held down to get a needle.  But now we have an understanding that I will lie down on my own as long as he doesn't force me and hold me down.  It does take me a while to get there, but I get there.  I get so anxious and the nerves build up inside of me.  Sometimes I stand at the edge of the rug crying, hoping that daddy will say that I don't need the medicine, but he hasn't done that yet.  He encourages me to come over on my own or it will be daddy's way and he'll have to hold me.  I'm nervous, but I slowly make my way over, one small step at a time.  Mommy is clearly upset but with some encouragement from daddy she tries to hold it together and be brave for me.  Within 30 seconds the rest is all over with.  I think each time it gets easier and this last time everyone was here watching me and they clapped for me.  I still sobbed afterwards pretending that I didn't care they were clapping, but it was different than nobody being here and it was okay.  Maybe it's not so bad getting the red medicine.  It makes it easier for me to be a good boy, and like I said before, I like to be a good boy.

Note: This story is simply my view of what Ryan's life might be like for him.  While it may not necessarily be an exact depiction of his feelings, I can't help but think that for many things I've hit the nail on the head.

DC

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 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