Let's talk diet, annual review meeting, and then the mushy stuff!
Ryan didn't want to eat dinner tonight. He remembered we had a leftover piece of cake in the fridge and he spent about an hour whining for it. Even my two-year old commented that he was "cranky". On the way home he told me he wanted soup for dinner. So I made him soup with some GF broth and GF elbow pasta. But as soon as I put the bowl down in front of him, he didn't want it. We offered him several other options but he kept whining for the cake. Julia finished dinner and ate her cake, and the tears poured out. I felt so bad watching him cry. He was craving sweets! I didn't want to give in and make him think he was going to get cake every time he refused to eat dinner and cried. So I told him if he took his medicine he could have his cake. He immediately got up and drank the cod liver oil, and then enjoyed the cake. We still can't pinpoint what is going on with his skin. He came home with some severe scratch marks, red blothes, and of course his cheeks were red. I wish we didn't have to wait until July to get his test results to see if there is something evident causing an allergic reaction.
We attended Ryan's annual review today. We're happy to report that he will maintain the current services he is receiving, and then some. He will continue his program through the summer, and for the fall his program was increased from 1/2 a day to a full day (5 hours). He will also continue with speech services, and they added O/T and group counseling.
I was very touched by yesterday's blog. I received several emails from people commending me for what I do for Ryan. The truth is I wouldn't be able to do even half of it without the support of my husband, family, friends, and colleagues. And let's not forget the wonderful people who help Ryan all day long while we're at work. All of you motivate and inspire us. We're so grateful for the people in our lives. Thank you for helping us help our little boy!
DC
Monday, May 10, 2010
Sunday, May 9, 2010
Day 23
Mother Warriors
Jenny McCarthy wrote a book about her son's battle with Autism and referred to some of the other mothers as warriors in this battle. Well Dawn fits this profile exactly. She is Ryan's warrior. She is relentless in her pursuit to help Ryan. I mentioned in an earlier post that our original appointment with Dr. Bock was on November 8, 2010. Yet, Dawn managed to get Ryan appointment on May 6, 2010.
Dawn tracked down Dr. Sydney Baker, one of the founders of DAN (Defeat Autism Now!). He was one of the doctors that help to train Dr. Bock. She somehow found his home phone number. She spoke to his wife for a little while and then she gave Dawn Dr. Baker's cell phone number. When she called the number he answered! They spoke for a while and he was able to get Ryan in next week. He asked for Dawn's email address so he could email the forms that we would need to fill out for the appointment. The only bad part was that his office was in Sag Harbor on Long Island. Instead of just taking the appointment Dawn called Br. Bock's office and left a message telling them the story. That afternoon Dr. Bock's office called and said that they had a cancellation and could fit Ryan in on Thursday. While we know that the office had a cancellation we had a feeling that given the situation and the fact that Dawn was talking to his mentor we moved to the top of the list to be rescheduled!
If you have been reading the blog or following the Ryan Express face book page you will have noticed that Dawn is a huge driving force in helping Ryan. She has set up our team to do the Autism walk, designed T-shirts, developed this blog, set up appointments, read every book on Autism, started Ryan on the GF/CF diet, found every store in our area that has food for Ryan, looked into all of the supplements that Ryan will need on the new diet, contacted his schools to be sure Ryan would be able to stay on his diet, and is in the process of setting up a Not-for-Profit organization in Ryan's name to help those that can not afford to see DAN doctors or buy food for the GF/CF diet.
Like I said Dawn is Ryan's Warrior and on this Mother's Day Ryan is very lucky to have Dawn as his Mother! Happy Mothers Day Dawn.
PC
PS The cake was fantastic and a big hit!
Jenny McCarthy wrote a book about her son's battle with Autism and referred to some of the other mothers as warriors in this battle. Well Dawn fits this profile exactly. She is Ryan's warrior. She is relentless in her pursuit to help Ryan. I mentioned in an earlier post that our original appointment with Dr. Bock was on November 8, 2010. Yet, Dawn managed to get Ryan appointment on May 6, 2010.
Dawn tracked down Dr. Sydney Baker, one of the founders of DAN (Defeat Autism Now!). He was one of the doctors that help to train Dr. Bock. She somehow found his home phone number. She spoke to his wife for a little while and then she gave Dawn Dr. Baker's cell phone number. When she called the number he answered! They spoke for a while and he was able to get Ryan in next week. He asked for Dawn's email address so he could email the forms that we would need to fill out for the appointment. The only bad part was that his office was in Sag Harbor on Long Island. Instead of just taking the appointment Dawn called Br. Bock's office and left a message telling them the story. That afternoon Dr. Bock's office called and said that they had a cancellation and could fit Ryan in on Thursday. While we know that the office had a cancellation we had a feeling that given the situation and the fact that Dawn was talking to his mentor we moved to the top of the list to be rescheduled!
If you have been reading the blog or following the Ryan Express face book page you will have noticed that Dawn is a huge driving force in helping Ryan. She has set up our team to do the Autism walk, designed T-shirts, developed this blog, set up appointments, read every book on Autism, started Ryan on the GF/CF diet, found every store in our area that has food for Ryan, looked into all of the supplements that Ryan will need on the new diet, contacted his schools to be sure Ryan would be able to stay on his diet, and is in the process of setting up a Not-for-Profit organization in Ryan's name to help those that can not afford to see DAN doctors or buy food for the GF/CF diet.
Like I said Dawn is Ryan's Warrior and on this Mother's Day Ryan is very lucky to have Dawn as his Mother! Happy Mothers Day Dawn.
PC
PS The cake was fantastic and a big hit!
Saturday, May 8, 2010
Day 22
Ryan attended a birthday party today and did great in regards to food. He sat at the table and watched kids grabbing at pretzels and cheese doodles. He didn't reach out his hand at all. I could tell he wanted some, but he didn't touch them. He looked at me first and asked if it was okay for him to eat them. I told him I would give him a special snack and he was fine eating something different. That is basically what happened for lunch and birthday cake. When they were passing out the pieces of ice cream cake he announced that he wanted his special cake. I wonder if he is okay with all of this because he recognizes that it makes him feel better. Wow! I am so proud of him!
We are celebrating Ryan's birthday in conjunction with Mother's Day tomorrow (he'll be 4 on Wednesday). Our immediate family will be here to help us celebrate. I made a GFCF chocolate cake and vanilla frosting. Ryan was excited to watch me make it and is looking forward to his pirate birthday party. The cake looks like a typical birthday cake but it isn't as tall; the cake cooked on the flatter side. Now I just hope it tastes okay and everyone doesn't mind eating it. I figured on his birthday he shouldn't need to have something different from everyone else and ask for his "special" cake. We're all going to eat Ryan's cake.
DC
We are celebrating Ryan's birthday in conjunction with Mother's Day tomorrow (he'll be 4 on Wednesday). Our immediate family will be here to help us celebrate. I made a GFCF chocolate cake and vanilla frosting. Ryan was excited to watch me make it and is looking forward to his pirate birthday party. The cake looks like a typical birthday cake but it isn't as tall; the cake cooked on the flatter side. Now I just hope it tastes okay and everyone doesn't mind eating it. I figured on his birthday he shouldn't need to have something different from everyone else and ask for his "special" cake. We're all going to eat Ryan's cake.
DC
Friday, May 7, 2010
Day 21
New foods. Tonight I made GFCF pizza for the first time. Granted, I bought the dough premade, but I've been wanting to try it to see if Ryan would eat it so I thought tonight was a good night to try it out. I topped it with fresh tomato sauce and a Vegan tofu "mozzarella" cheese. The cheese melted and got all bubbly and tasted really close to the real thing. Ryan walked through the door and immediately noticed the smell of the pizza cooking. And he said, "Mommy, you're making pizza?" So I felt good that it at least smelled like real pizza. And he ate it and I think he liked it. He asked for a second helping. He certainly didn't eat as much as he would have prior to this diet but he ate it. And we ate it too. Well, not all of us. Julia took one little bite and announced that she didn't like it. She has no filter! But it was okay because it didn't stop him from eating it.
Next task was to make a GFCF cake because we are celebrating Ryan's birthday on Sunday. I had good intentions to do it tonight, but it was a very exhausting and emotional day and I need to walk away from the computer and rest. Tomorrow is another day!
DC
Next task was to make a GFCF cake because we are celebrating Ryan's birthday on Sunday. I had good intentions to do it tonight, but it was a very exhausting and emotional day and I need to walk away from the computer and rest. Tomorrow is another day!
DC
Thursday, May 6, 2010
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
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
Day 19
Ryan had a bad day. One of his teachers called me to tell me that he had several meltdowns and he was acting differently than he has been the last two weeks. She said he was whiny and cried because he finished his snack and wanted more. We haven't given him anything new in the past 24 hours so I'm not sure why this happened. He flipped out on the car ride home because Phil had to stop for gas and he wouldn't let Ryan get out of the car. He then cried even harder when Phil drove a different way home due to his detour to the gas station. The only thing I can think of is that he deviated slightly from the diet the day before when he grabbed Julia's bag of pretzels instead of his own. He had 2 or 3 mini pretzels before we stopped him. Note to self...we need to come up with a color code system or something similar so that he doesn't accidentally eat someone else's food. At home we can just switch Julia over to some of the GF snacks (although she is not taking a liking to them the way Ryan has). But at school he's going to have other kids' food around him all of the time. Who knows... maybe he snuck more non-GFCG food that we don't know about.
On a positive note, he took his dose of cod liver oil much better last night. We mixed one part oil with one part water. This helped to dilute it and not be so oily. We then gave it to him in two different syringe sessions. This is the first day that he hasn't spite some of it out. I don't know if it is because he is getting used to the taste or because we diluted it, but I'm going to keep diluting it in the future!
Off to Dr. Bock tomorrow morning! Our November 8th appointment got moved up to this week...Miracle! Dr. Bock is a specialist, a DAN! (Defeat Autism Now!) doctor.
DC
On a positive note, he took his dose of cod liver oil much better last night. We mixed one part oil with one part water. This helped to dilute it and not be so oily. We then gave it to him in two different syringe sessions. This is the first day that he hasn't spite some of it out. I don't know if it is because he is getting used to the taste or because we diluted it, but I'm going to keep diluting it in the future!
Off to Dr. Bock tomorrow morning! Our November 8th appointment got moved up to this week...Miracle! Dr. Bock is a specialist, a DAN! (Defeat Autism Now!) doctor.
DC
Tuesday, May 4, 2010
Day 18
As we were driving home today we realized that we have not had takeout since we started this GF/CF diet. We have to find places for us to order out food in case we run into times when making food at home is not a possibility. Ryan is doing so well on his diet that we are constantly getting reports of what a different child he has become and it is amazing.
Today Ryan was re-tested for OT and we have to wait for the official report. However, as Dawn was talking to the evaluator she was telling us that Ryan did such a great job of doing the activities. When she was interviewing his teachers they were telling her stories about how Ryan would not sit still, would not listen, or follow directions. When she was evaluating Ryan she was thinking that everyone was lying to her. Ryan did a fantastic job. He held her hand and walked her over to table where they could work. He followed directions and stayed on task for the testing. Before this diet Ryan had a very limited attention span. To hear that he sat through the entire test and followed directions is nothing short of miraculous. While he does have some areas that will need to be addressed with some OT therapy, he is showing improvement since his last OT evaluation six months ago.
PC
Today Ryan was re-tested for OT and we have to wait for the official report. However, as Dawn was talking to the evaluator she was telling us that Ryan did such a great job of doing the activities. When she was interviewing his teachers they were telling her stories about how Ryan would not sit still, would not listen, or follow directions. When she was evaluating Ryan she was thinking that everyone was lying to her. Ryan did a fantastic job. He held her hand and walked her over to table where they could work. He followed directions and stayed on task for the testing. Before this diet Ryan had a very limited attention span. To hear that he sat through the entire test and followed directions is nothing short of miraculous. While he does have some areas that will need to be addressed with some OT therapy, he is showing improvement since his last OT evaluation six months ago.
PC
Monday, May 3, 2010
Day 17
No thanks, I am good!
The diet is going well and Ryan seems to be adjusting to the GF/CF food. We received a report today that Ryan did a great job during circle time at his daycare. This used to be a huge issue. He never wanted to sit during circle time and would destroy this event at daycare. His teacher told us that he is listening much better and that he is much calmer since he has been on the new diet.
Ryan is taking the cod liver oil a little better but we still have to force the issue with him. However, tonight Julia decided that she wanted some of the medicine. She hates being left out and tonight she announced that she wanted some of Ryan’s medicine. So Dawn gave her a plastic syringe with a small dose of cod liver oil. She put a little in her mouth, made a very funny face, and gave Dawn back the syringe. When Dawn asked if she wanted the rest Julia replied "No thanks, I'm good!"
PC
The diet is going well and Ryan seems to be adjusting to the GF/CF food. We received a report today that Ryan did a great job during circle time at his daycare. This used to be a huge issue. He never wanted to sit during circle time and would destroy this event at daycare. His teacher told us that he is listening much better and that he is much calmer since he has been on the new diet.
Ryan is taking the cod liver oil a little better but we still have to force the issue with him. However, tonight Julia decided that she wanted some of the medicine. She hates being left out and tonight she announced that she wanted some of Ryan’s medicine. So Dawn gave her a plastic syringe with a small dose of cod liver oil. She put a little in her mouth, made a very funny face, and gave Dawn back the syringe. When Dawn asked if she wanted the rest Julia replied "No thanks, I'm good!"
PC
Sunday, May 2, 2010
Day 16
Another fabulous day! He sat with me for an hour playing different board games, including Chess. He actually said, "Mama, will you play with me?" Of course he didn't play the way adults play, but he made up the game as we went along and was content simply moving the pieces around. He took the balls for the Chinese Checkers game and arranged them into different patterns. He got a really good fine motor workout in! I've never seen him sit still for one whole hour and stay entertained playing games. At one point I leaned over and kissed his head. Normally he would squirm away from me, and then wipe his head where I touched it. This time he looked at me and said, "Thank you, Mama." How lucky am I to get my Mother's Day gift a week early? He melted my heart. What a gentle soul!
Ryan's appetite has returned. He ate well all day, and did not have a meltdown when he asked for something he wasn't allowed to have and we didn't give it to him. In fact, he already knew he wasn't allowed to have it, but he half-heartedly asked already knowing the answer. And it wasn't like he was devastated or felt deprived he couldn't have it. He drank the rice milk again today, but we tried pear juice and he didn't like it. For dinner he ate a hot dog (no bun), an entire boneless chicken breast, and a bowl of rice. He's still not interested in vegetables, but we'll take whatever victories we can get.
DC
Ryan's appetite has returned. He ate well all day, and did not have a meltdown when he asked for something he wasn't allowed to have and we didn't give it to him. In fact, he already knew he wasn't allowed to have it, but he half-heartedly asked already knowing the answer. And it wasn't like he was devastated or felt deprived he couldn't have it. He drank the rice milk again today, but we tried pear juice and he didn't like it. For dinner he ate a hot dog (no bun), an entire boneless chicken breast, and a bowl of rice. He's still not interested in vegetables, but we'll take whatever victories we can get.
DC
Saturday, May 1, 2010
Day 15
Today was a great day. For breakfast he ate 2 organic marshmallow bars, one waffle, two pieces of toast, and two cups of rice milk. Not a bad breakfast! Today was also our first true test of the diet. We had a first Holy Communion party today and we knew that most of the food at the party was not GF/CF. Dawn packed his food and off we went.
At the party there were pasta, meatballs, chicken francaise, rolls, manicotti, cake, M&M's, and a huge hero sandwich shaped in a cross. There were potato chips, butter pretzels, and cheese doodles for snacks. Before the diet this would have been right up Ryan's alley. He would have eaten for the entire four hours we were at the party and whined for more when we told him that was enough. Today was a much different story.
He did ask for some things but we simply told him no and offered him something else that we brought. Dawn had packed organic GF/CF chicken nuggets, organic french fries, and organic ketchup for his dinner and he ate it without complaint. He did not go up to the buffet table and beg/demand for food. He ate all of his food and continued playing with his sister and the rest of the cousins. We were so proud of him!
It was also great to observe Ryan interacting with others. The hosts of the party had brought arts and crafts for all the kids to play with to help pass the time. In the past, Ryan wanted nothing to do with these types of activities. We used to have to bring a portable DVD player and let him watch a show in the corner to calm him down. Today was a much different story. He sat and participated in the arts and crafts. There were small foam shaped objects, like sail boats, surf boards, and such that had a small piece of paper on the back that had to be peeled off. Ryan sat down in the middle of the group and peeled these little pieces of paper off for over 30 minutes. He never once asked for help. He then stuck these foam shapes onto a little picture frame. He kept showing his art work to some of the high school aged cousins and he was the one that was engaging the conversation. When asked what he was doing, he said that he was making a gift for Mommy. Even when Dawn had to step away to change Julia he waited for her to be done and ran up to her to show her what he had made!
At one point during the party, Dawn was talking to one of her relatives and was telling her about Ryan's diagnosis of Autism. The woman was shocked and told Dawn that the doctor must have been pulling her leg. Ryan looked fine. He was talking to people, interacting with his cousins, playing appropriately, sharing toys, and did not have any melt downs. This was the first family gathering that we did not have to be running around after Ryan and we were able to enjoy the party.
When it was time for cake we thought that we would be in trouble. We had been there for four hours and both of the kids were getting tired. One of the people at the party had made GF/CF brownies for her son and made a big enough batch to share. Ryan had two brownies and cut up strawberries. He asked for cake once but Dawn told him no and again offered him an alternative. He did ask for a second brownie. Once he finished, he just got down and continued to play. It was amazing. The fact that he was the only person at the table not eating cake did not bother him at all! In the past it would have been a nightmare if he did not have what everyone else was having, especially cake! Like I wrote at the top of the blog today was a great day!
PC
At the party there were pasta, meatballs, chicken francaise, rolls, manicotti, cake, M&M's, and a huge hero sandwich shaped in a cross. There were potato chips, butter pretzels, and cheese doodles for snacks. Before the diet this would have been right up Ryan's alley. He would have eaten for the entire four hours we were at the party and whined for more when we told him that was enough. Today was a much different story.
He did ask for some things but we simply told him no and offered him something else that we brought. Dawn had packed organic GF/CF chicken nuggets, organic french fries, and organic ketchup for his dinner and he ate it without complaint. He did not go up to the buffet table and beg/demand for food. He ate all of his food and continued playing with his sister and the rest of the cousins. We were so proud of him!
It was also great to observe Ryan interacting with others. The hosts of the party had brought arts and crafts for all the kids to play with to help pass the time. In the past, Ryan wanted nothing to do with these types of activities. We used to have to bring a portable DVD player and let him watch a show in the corner to calm him down. Today was a much different story. He sat and participated in the arts and crafts. There were small foam shaped objects, like sail boats, surf boards, and such that had a small piece of paper on the back that had to be peeled off. Ryan sat down in the middle of the group and peeled these little pieces of paper off for over 30 minutes. He never once asked for help. He then stuck these foam shapes onto a little picture frame. He kept showing his art work to some of the high school aged cousins and he was the one that was engaging the conversation. When asked what he was doing, he said that he was making a gift for Mommy. Even when Dawn had to step away to change Julia he waited for her to be done and ran up to her to show her what he had made!
At one point during the party, Dawn was talking to one of her relatives and was telling her about Ryan's diagnosis of Autism. The woman was shocked and told Dawn that the doctor must have been pulling her leg. Ryan looked fine. He was talking to people, interacting with his cousins, playing appropriately, sharing toys, and did not have any melt downs. This was the first family gathering that we did not have to be running around after Ryan and we were able to enjoy the party.
When it was time for cake we thought that we would be in trouble. We had been there for four hours and both of the kids were getting tired. One of the people at the party had made GF/CF brownies for her son and made a big enough batch to share. Ryan had two brownies and cut up strawberries. He asked for cake once but Dawn told him no and again offered him an alternative. He did ask for a second brownie. Once he finished, he just got down and continued to play. It was amazing. The fact that he was the only person at the table not eating cake did not bother him at all! In the past it would have been a nightmare if he did not have what everyone else was having, especially cake! Like I wrote at the top of the blog today was a great day!
PC
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