Week 53

Spring Break Week!  Lots to share, so here it goes...

Let's start off with a video of Ryan and Julia dancing on a rainy spring break day.  While Ryan provides a good chuckle as he barks to "Who Let the Dogs Out?", it is difficult to ignore Julia's dance moves!

Phil's mom came over for lunch this week and we showed her the videos of the kids dancing.  They then felt the need to get back into their "dancing costumes" to show grandma.  Here's a picture of the kids being silly with grandma.

For over a month the boxes from Geneva Diagnostics Labs have been sitting in our dining room.  It is time for Ryan to get more blood work done before his next appointment with Dr. Bock in May.  We waited until this week because we're all home from school and it is the best opportunity to get him to St. Francis Hospital first thing in the morning to get the blood drawn.  He has to fast for 12 hours beforehand so Phil got him up early on Wednesday morning and drove him over to the hospital.  And of course insurance doesn't cover any of these tests.

 I get a knot in my stomach every time I look at those boxes.  I am so thankful that Phil took him because I was a wreck thinking about it and I know it would have been difficult for me to take him and put him through that.  And if he needed to be restrained he has become too strong for me to do it.  The doctor ordered level checks for certain things but not everything like last time but they still needed to draw about 15 vials of blood.  It was overwhelming to go through the boxes to complete the paperwork and prep the ice packs and vials, but the worst part was thinking of Ryan going through it.  Ryan and Phil were gone for over 2 hours.  Ryan needed to be restrained a bit and they were just able to get through the last vial before they needed to stop because Ryan was starting to turn pale.  That is a lot of blood for a little kid in one sitting!  Thank goodness he doesn't need to go back and they got it all done.  I made him a special pancake and bacon breakfast for him upon his return.  I was so proud of him!

Ryan showing me his boo boo.

Here is a video of Ryan eating his special breakfast:

We've established our team, The Ryan Express, for the Autism Speaks Walk in June. We hope to get a great turn out of walkers like last year.  The walk takes place on Sunday, June 5th at the New York-Presbyterian Hospital in White Plains.  Registration begins at 9am and the walk begins at 11am.   Please click this link to join our team.  The Ryan Express Team Page.  And don't forget to let me know if you need a t-shirt!

After our recent posted picture of Ryan's skin I heard from a colleague at work about a product called almond oil.  She suggested we try it and we purchased it at Nature's Pantry that week.  We've been rubbing it on Ryan's legs every other night after his bath.  His skin is noticeably smoother.  The rash still remains but it seems more contained and it is a different kind of rash.  It is not so puffy; it's more like red scabs and pimples. He still scratches which is causing the scabs, but I'm going to increase the frequency of applying the oil and see if that helps.  We're hoping to post a new and improved picture within a couple of weeks!

Ryan's B-12 injections, aka "red medicine", is going fairly well.  He still stalls a bit, but we no longer need to put the cream on first, which saves a lot of time.  In order to get it done without too much stalling we play a game with him.  If I'm giving him the injection I secretly tell him that we have to go in the other room and do it quickly so we can surprise daddy.  He likes to surprise us and show us the used syringe, and we in turn get all excited and give him hugs.  He becomes very proud of his accomplishment.  I'll have to get it on video one day because it really is so cute!  But I did get a video one night of him talking about his red medicine and cream.

A note about Ryan's diet... he ate tuna fish and liked it!  With all of the negativity going around about the mercury in fish this isn't something we would feed him all of the time, but it was nice to be able to give him something different.  And I happened to have a GFCF and egg free condiment similar to mayonnaise, called Vegenaise, that I mixed with the tuna. 

This week we watched an HBO Documentary called A Mother's Courage: Talking back to Autism.  I had missed it the last time it was on in the fall but once I heard the date it was airing this spring we set our DVR to record it.  It was an amazing story and if you ever see it scheduled on HBO you should view it.  Or we saved it on our DVR, so come on over!  This documentary was touching, enlightening, and educational.  There are so many things I can share about it, but I won't and hope that you see it yourself one day!  I'll simply say that we feel so blessed that Ryan is able to communicate with us.  I highly recommend families with Autistic children watch this documentary.  Here's a sneak peak:  View the Trailer
Ironically, Phil came across a video this week about an Autistic girl named Carly and it reminds me of the above mentioned documentary.  This is a 9 minute video, but well worth watching the entire thing.  It is so inspiring for families with nonverbal children!  Carly's Voice

One night Ryan started talking to me about bringing in pennies in to school because Ms. Rose (one of his teachers at PARC) said they needed to fill the whole jar with pennies.  I vaguely remember reading about a collection for Japan in one of the newsletters and forgot to send Ryan in with some coins.  Here is Ryan talking about the collection.  The next day Ryan brought in a bag of coins to add to the jar at school.

We're off to search for some hidden plastic eggs.  We'll post some egg hunt pictures next week!  Happy Easter!
DC

Day 31

Blood drawn... another thing to check off of our list! What a relief! He had two tests done: an Oxidative Stress Panel, and an Ion Profile. Phil said that Ryan did great. He wasn't too upset and he handled it well. There were lots of vials that needed to be filled but he did a good job, and of course afterwards he asked for his cookie that was promised to him last night and this morning! He was fine with fasting and we were lucky to get him in to get it drawn before 8am. Phil brought him to Saint Francis Hospital. We had a lot of difficulty finding a lab that would draw it for us. When we called Dr. Bock's lab they said they didn't open until 9. We felt that would be a long wait for Ryan and after numerous frustrating phone calls we out found St. Francis would do it and their lab opened at 7am.

I'm so grateful that Phil took the morning off from work to bring him. It wasn't a great day for me to take off, but if I had to I would have. But truthfully, I'm not sure I could handle another session of him screaming "Please stop, I don't like this!" To top it off, he then had to go to his pediatrician for his annual check up. I had no idea he was going to have to get shots! The pediatrician gave him one of his tetnus boosters and his MMR vaccine. Instead of getting four vaccines at age 5, she likes to split it up and give him 2 this year and 2 next year. But again, Phil said that Ryan did really well. He cried for one of them because it hurt (probably the MMR) but the booster didn't really phase him. Phil had an extra lollipop with him and once he saw that he was content! Bribery works! (or it at least makes us parents feel better about making them go through something painful and scary- it's their consolation prize and rids our guilty conscience!)

DC

Day 30

Today we added a new supplement from Dr. Bock's list. This is now the 5th supplement and we have four more sitting in the shopping bag just waiting to be opened. We haven't added a new one in about a week so we figured we'd give it a try. This one is called Sugar Companion. I didn't know much about it so I looked it up and found that it is supposed to help reduce cravings for sweets. This was a big problem for Ryan before we started this diet and continues to be an issue, although it has diminished somewhat. I'm not sure how long it takes to work its way into the system but it didn't take effect today. He's been craving salty foods the past few days and that continued today. He asked for chips countless times, to the point where we gave in and let him have 2nd and 3rd helpings. It was out of control and by the afternoon we were super frustrated. He also asked several times for lollipops and cookies.

Phil's mom visited for lunch and Ryan was very talkative (he started some of the conversations) and made lots of eye contact. She noticed the recent improvements he's been making, even a few new ones after just seeing him last week for his birthday.

For dinner I made a GFCF pizza from scratch. He ate a little bit but wasn't crazy about it; the crust was bumpy looking and he said it had potatoes on it! It didn't help that Julia took one bite and made an announcement about how yucky it was. At Nature's Pantry today I found a GFCF frozen pizza and purchased it to try out. I would love to find pizza that Ryan is content with. I miss eating pizza at home, but can't bring myself to ordering it and then telling him he can't have it. Same goes with Chinese food. We used to order Chinese take out at least 2 times a month. Since we started this diet we haven't ordered out at all.

Most of the homemade pizza got wrapped up and put into the fridge and he ended up having toast before bed. We wanted him to have a full stomach before his 12 hour fast for his bloodwork. We spent time warning him about the morning and telling him that he was going to wake up, go to the doctor, and then eat breakfast. He asked if he could have cookies and we said yes. So we had him practice saying the routine aloud: wake up, go to the doctor, eat a cookie.

It was a very stressful day for me worrying about him going for bloodwork in the morning.

DC

Day 20

Dr. Bock

Today was our appointment with Dr. Bock. Originally this appointment was for November 8th but Dawn managed to get Ryan an appointment today. I will talk about how she managed that one in another posting.

It was a crazy day but one well worth the time. The only bad part of the appointment was the fact that we had to have Ryan fast to get blood work. This never ended up happening. Now that his body is accepting the GF/CF food he has regained his appetite. So by 7:45 AM he was getting very upset telling us that he was hungry and that he wanted his special toast! The appointment lasts over 4 hours and the blood drawing does not occur until the end of the appointment. There was no way we were going to be able to keep Ryan from eating until noon.

Dr. Bock seems like a very nice man and he was impressed with the progress that Ryan has been making with the diet. We described what Ryan was like before the diet and what he was like now. Ryan did great with the appointment. He sat and played in the office as Dr. Bock went over the huge intake packet with us. We even had Dawn's parents meet us at the appointment just in case Ryan could not handle the appointment. Ryan did amazing. He watched the phone company repair a downed wire outside the building. He even waved to the worker in the cherry picker fixing the line. He was such a trooper.

Dr. Bock was also impressed with the fact that we read his book and that Dawn was able to share the progress that Ryan has made on the diet. The doctor shared with us that it is a good sign that in such a short amount of time Ryan has made such great progress. He even commented that Ryan had good eye contact! This was probably the first time that anyone has ever said that about Ryan.

After the appointment was over they handed us several test kits to collect more blood, stool, and urine to get tested. The directions are unreal and we feel completely over whelmed with all the stuff that we learned and that we have to now do to help Ryan. Finding a lab that will draw the blood needed and test for the specific items that he wants is a huge task. Dawn is still sorting though all the directions and going crazy finding a place that will do these tests and at a time that we can have Ryan fast but not have him go crazy about wanting to eat.

The last part of the appointment was going over all the supplements that they want Ryan to take. This is a huge undertaking and the directions alone will make your head spin. Take this now, this later, this with water, this with food, this twice a day, this needs to be in the frig, this can not be in the frig and the list goes on and on.

As over loaded with information as we are, we do feel much better that we are now under the care of a doctor and not his book. While the book was a huge help and a great resource, having a human being talking to us and a plan of action is so reassuring. We are hopeful that with the supplements, the continued diet, the OT, continued speech and whatever else he wants us to try we are going to see even more progress by his next birthday! Today we received what has been missing in a while: Hope.

PC