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