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

Week 19

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

Week 18

Dedication to Olivia

This week's blog is a dedication to a one-year old angel named Olivia.  Let me first tell you a little bit about Olivia and then I will tell you why I've dedicated this week's blog to her. 

As an infant Olivia was diagnosed with the rare Neuronopathic Gaucher's disease.  I found out about Olivia and her condition back in March, right around the time we received Ryan's diagnosis.  It was close to Olivia's 1st birthday, which I believe she spent in the hospital.  My aunt was selling raffle tickets for a benefit being held for Olivia.  I remember going home that night, with my raffle ticket stubs in hand, looking at her beautiful face and I was consumed with so many feelings.  I was struck with grief about what this little girl and her family is going through.  I was curious as to what Gaucher's Disease was and spent some time on the Internet reading articles about it.  I was upset that it was the first time I was hearing about Olivia.  Her parents are friends of the family but I hadn't seen them in a while and was kept out of the loop.  I was filled with guilt that I hadn't known about this and wasn't there for Olivia and her family during her first year of life.  I had strong feelings urging me to reach out to Olivia's mom, Melissa.  During the spring I read Jenny McCarthy's book, Mother Warriors, and Melissa immediately struck me as a mother warrior.  There is a cause on Facebook for Olivia and I went through the bulletins posted by Melissa to try to understand just what Olivia, and her family, is going through.  I can't remember the last time I cried so much.  Oh wait, it was when I found out my son was Autistic.  Back then I was devastated with the news.  Looking back, I should have been grateful that I wasn't told he had a disease that would take his life before he turned three.  But more on that part later. 

I got in touch with Melissa and we had several email communications with each other over the summer.  I was even blessed to have the opportunity to visit Olivia in her home a couple of weeks ago.  I was glad to meet her and I held her in my arms and my heart melted.  I was also in awe of what her family does to keep her alive every day.  Olivia is currently in the hospital; she's been there almost all week.  She may be able to go home in a couple of days.  From what Melissa has shared, she will go home on Hospice care and they will do their best to keep her comfortable at home for her remaining time. 

I visited Olivia on Friday.  I asked Phil to come with me to meet the angel that I now talk about so often.  My heart broke as I walked through the Pediatric ICU, past all of the rooms filled with small children, family members and nurses hovered around their cribs.  It was extremely emotional.  It was so good to see Olivia, and even as she loses this battle against Gaucher's Disease she manages to smile.  And I don't know how she does it, but Melissa continues to be a mother warrior.  She has an unbelievable amount of inner strength and the love she has for Olivia is amazing. 

There were things I could have written about this week... new foods, meds, injections, ups and downs with Ryan, yadda-yadda-yadda.  But I felt that telling this story was far more important.  By no means am I trying to say that supporting Autism is not important.  I just feel silly sometimes writing about the trials and tribulations we have with Ryan, when there are so many other children in this world who suffer far more in one day than Ryan ever will in a lifetime.  It saddens me that I can't do something about it.  I want to save Olivia and all children out there who need saving. 

I feel guilty worrying about Ryan's food; there are children who have to be fed by a tube or through IV.  I feel guilty worrying about the rash on his legs; there are children who can't walk.  I feel guilty worrying about Ryan's articulation; there are children who can't talk.  I feel guilty worrying about Ryan's eye contact; there are children who cannot see.  I feel guilty worrying about the tubes in Ryan's ears; there are children who cannot hear.  I feel guilty worrying about the way Ryan writes his name; there are children who will never hold a pencil.  The list can go on and on.  The list does go on and on for Olivia.

So for this week's post I am celebrating how blessed and lucky we are that Ryan is who he is, and grateful about who he's not.  And this week's post is for Olivia who desperately needs your prayers more than ever!

I urge everyone to read Melissa's story and her past bulletins, and join the cause the family has set up for Olivia. It's on Facebook and I can send the link to join the cause to anyone interested. Here is a link to one of Melissa's updates.  http://apps.facebook.com/causes/posts/337500
It is a touching, heart-wrenching journey. It will make you cry.  It will give you insight into a disease that you probably never heard about before. It will make you thankful for your health and the things you have to look forward to.  It will open your eyes and change your outlook on life. Well, at least these are things Olivia has done for me.

DC

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

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

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