Week 143

Two years ago today we lost Baby Campbell #3.  A lot has happened since then and as difficult of an experience as it was, without it Jack wouldn't be in our lives.  We were too busy today to dwell and be sad, and it is embarrassing to say that I only paused for a moment to look at the ultrasound and remember.

This week Ryan began to take cod liver oil again, as encouraged by our visit to Dr. Cowan.  We are pleased with the ease Phil was able to administer this to Ryan.  Ryan remembered taking it a year ago, and as unpleasant as it is to drink, he is taking it well and the process is over within a minute.  I think back to when we first needed to give this to Ryan and how long it took, and how many shirts he ruined because the oil dribbling out of his mouth stained them.

We attended a birthday party over the weekend and I want to share a sweet story regarding Ryan, a two year old girl, and the pinata.  Numerous times Ryan has been the one at the party that struggles gathering candy and prizes from the pinata.  There are usually bigger and faster kids who push their way to the center and hog the candy.  Ryan often ends up feeling defeated, walking away with a couple of things, crying.  This party was different.  A majority of the kids were very young so Ryan had no trouble gathering loot.  But there were a lot of kids and just behind Ryan was a two year old girl crying because she felt defeated.  Ryan turned to her and took all of the candy that he had gathered in his fist and handed it to her.  She looked at him and continued to cry, not taking the candy from his hands.  So he placed it down in front of her feet so that she could pick it up herself.  I couldn't have been more proud of him!

Ryan with his balloon sword.

Julia after her visit to the face painting station!

 There are times when Ryan refuses to do homework.  It takes a lot to get him to sit down and do more writing, after a long day at school.  This week he surprised us by doing an hour worth of homework.  He read the book, "Are You My Mother?".  After reading a few pages I looked at how many pages there were and asked him if he wanted me to finish it for him.  But he said no.  He wanted to read the whole thing.  It took him 30 minutes but he did it.  I was worried about it taking that long because he then had to write a book report but he did that as well.  He seems to enjoy reading when he knows the words, or when there are only a couple of words he needs help with.  We were so proud of him.

Happy Jack enjoying a day at home with mommy.

I tried out a new pancake mix and was pleased with how fluffy they turned out. However, like the others, after being refrigerated they tend to get crumbly.  But Ryan doesn't seem to mind, as long as they have his mini chocolate chips in them!

I mixed Ryan's chocolate flavored almond milk in to some of the batter to make chocolate chocolate chip pancakes and they were yummy.  I enjoyed them, as well as Julia, who can immediately taste the difference when I try to sneak something GF into her diet.

I read a book this week called Love Anthony by Lisa Genova.  I've had it since September and finally took the time to read it, and am so glad I did.  A big thank you to my friend Bridget who works in the book selling business.  She knows me well enough to know I would like it, and generously surprised me with it when she came for a visit to meet Jack.  I think part of me had put off reading it because I knew it would be sad, and it was.  Not sad because the boy dies, but sad because of the reality of how many children are on the Autism Spectrum, and are misunderstood.  But it was more inspiring than sad.  It reminded me of how far Ryan has come over the past couple of years, blessed that he is verbal, and thankful that he is who he is.  Also, it makes me want to visit Nantucket one day!

Here is the summary written on the back cover:

Olivia Donatelli's dream of a "normal" life shattered where her son, Anthony, was diagnosed with autism at age three.  Understanding the world from his perspective felt bewildering, nearly impossible.  He didn't speak.  He hated to be touched.  He almost never made eye contact.  And just as Olivia was starting to realize that happiness and autism could coexist, Anthony died.  Now she's alone in a cottage on Nantucket, separated from her husband, desperate to understand the meaning of her sons' short life, when a chance encounter with another woman facing irreparable loss brings Anthony alive again for Olivia in a most unexpected way.  In a piercing story about motherhood, autism, and love, Lisa Genova offers us two unforgettable women on the verge of change who discover the small but exuberant voice that helps them both find the answers they need.

This story is so much more than simply autism, and even marriage, and I recommend it to everyone.  You don't need to have a child with autism or be married to connect with this book.  It is about communication, and we all communicate in some way.  I don't want to say much more since I feel the back cover already gives so many "spoilers".  Who wants to borrow it first???

DC

Week 38

I made a GFCF egg free pizza today.  This was my second attempt at doing this from scratch and this time it came out much better than last time.  I think over the months I've certainly improved my GFCF cooking techniques.  I'm usually an impatient baker but you really need to slow down when cooking GFCF items and follow the directions carefully.  There aren't many shortcuts you can take.  If an ingredient works better if it is at room temperature, then you need to be patient, and plan far enough ahead, to make sure it is at room temperature.  Here is the pizza cooking in the oven.  It smelled yummy and Ryan was very excited!

Here's a video of Ryan eating the pizza; he ate two slices!

And here's one of Julia too.  She liked it until she found a piece of basil in the sauce and flipped out!

Ryan's skin continues to get smoother each day.  On most days we give him the oils in the morning and the evening.  I shouldn't really say "we" since Phil is usually the one who takes care of the oils.  Phil has also been the one to give Ryan his injections lately.  We've had a bit of a setback in the injection department.  Ryan now gets himself all worked up like he used to, and the process usually takes about 15-20 minutes because he stalls and makes excuses, and changes seats and positions a dozen times before we firmly tell him this is it or we're holding him down.  I'm not sure why the sudden change back to what it was since he was doing so well.  But now whether it's me giving the injections, or Phil, Ryan tries his best to avoid them.

A funny little story to share... Ryan looking in the mirror says: "Mom, I'm getting big.  Soon I'm gonna go to college."  (For those of you familiar with it, I think he's been watching Toy Story 3 a bit too much!)  Speaking of Toy Story 3, we had a visit from Angela and Michael this weekend and the kids had a ball playing with their Toy Story characters with them.

We had a snow day on Friday.  Here are some pictures of the kids (and Phil) frolicking in the snow on Saturday.

The faster, the better!

Looks like Ryan took a snowball in the face, but this was him trying to throw the snowball at Phil.

Getting ready to surprise Julia with a snowball!

Attempting to make a snowman. 

Poor daddy got his workout today!

And don't worry, I got plenty of action with the kids this week too.  Here's a shot of Ryan and I snuggling on the couch.  He's pretending to be Frosty with a fake pipe in his mouth!

DC

Week 34

Lots of photo opportunities this week to share with you!

As promised last week, here are some pictures of Ryan at our family reunion last Sunday.  He loved the show put on by the clown and really got into it.  It kept him entertained and on task for an hour.  He even volunteered during her show. 



Ryan wasn't crazy about standing next to Santa Claus
















Even though Ryan enjoyed the clown, he did cover his ears whenever she did anything with the balloons.  He was afraid one would pop and be too loud and scare him.  All of the kids were getting up to the microphone to introduce themselves and tell the crowd who their parents and grandparents were.  Just about every child did this, but Ryan didn't want to.  At one point we almost convinced him and he started heading up to the microphone, but then everyone started clapping and cheering for him because he was being brave, and he turned around and sat right down.  I guess it was the noise or over abundance of attention he was getting.  Several family members commented on the big changes they saw with Ryan.

During the week we had an appointment with Dr. Bock for a checkup.  While in the waiting room Ryan sat quietly at a little desk and wrote with a pen in a coloring book.  There were other children in the office bouncing around and their parents were running around after them and cleaning up after them.  For once Phil and I felt relieved not to be the ones chasing our kid.  Ryan was well behaved not only in the waiting room, but during the entire visit.  Dr. Bock seemed impressed with Ryan's improvements and accomplishments.  We told him about the sign language and Dr. Bock asked Ryan to show him, but he wouldn't.  Ryan isn't great about performing something on the spot for people.  I don't think he likes the attention. 

So the summary of our appointment: we are stopping the Nystatin.  We are increasing the oils because Ryan's skin is still very dry and scratchy.  So now we have to give him oils in the morning as well.  And because we feel the injections are helping, he suggested doing them every other day rather than twice a week.  I am thankful that Ryan is good about getting the injections; I don't think we would have agreed to give them every other day if we had to go back to holding him down while he's kicking and screaming.

On Saturday Ryan performed in PARC's Holiday Show.  I felt so bad that I couldn't attend (Julia had parent day at ballet class), but Phil video taped it for me.  Phil's mom also went and both said the show was great.  Ryan was on task the entire time.  He followed all of the dance moves and sang every song.  We had him dressed in a shirt and tie, and Ryan pulled out the front tails of his shirt while on stage.  Luckily he was in the back row!  Here are some pictures that Phil took:

Still a little unsure of being near Santa, but getting better.

Ryan with Miss Sue, his special education teacher at PARC

Ryan with Miss Rose, one of the head teachers in his classroom.

After the show Phil's mom took us out to lunch.  Both kids were a little wild, but I guess better wild at that time than on stage!

And this blog wouldn't be complete this week without a couple of pictures of Julia at ballet class.

Ryan and Julia had a playdate at a friend's house.  They all made gingerbread houses.  Ryan enjoyed this task, and did a GREAT job eating just a few candies that I told him were okay and he steered away from all of the others.  What great will power!  Not many people can sit next to a bowl of M&M's and not eat at least one!



The finished product!

I caught Ryan and Julia working on a Sudoku puzzle.  Okay, they weren't following the rules, but they were practicing tracing their numbers.  They are their mother's children!

I thought this was hysterical- they both looked up at me at the same time giving me the
"we're busy, stop taking pictures of us" look!

Yes, more hats made by Miss Jessie at Noah's Ark!  Ryan proudly wears them around all day!

On another note, our thoughts and prayers go out to Baby Olivia (see our blog on Week 18) who has been admitted into the PICU today with pneumonia.  Get better soon Livvy!

DC

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

Day 11

Frustration and a smelly living room! Our order from Kirkman Labs came today. Ryan's new sunscreen arrived, as well as liquid hand soap, and two trial sizes of cod liver oil. Several people have suggested trying cod liver oil, so we thought we'd give it a shot. Ryan thought he'd give it a shot too (literally)... one sniff and he shot it right out of the syringe and all over the wall in my living room. Yuck! Chaos ensued and here I am looking at a fish oil-splattered wall.

To make things worse, Ryan's cheeks were red most of the day today. I printed some articles about phenols. Bananas have high concentrations of phenols and considering all of the bananas he ate the other day, he may crave foods with phenols. I don't know if this is the cause, but I'm not sure what else it could be. His skin isn't as soft as it was last week and the improvements we were seeing with his skin have stopped and have started to reverse. I don't know if we are doing something wrong with the diet, or if he is sneaking in "bad" foods at daycare. It is extremely frustrating not knowing and it makes it difficult to fix the problem.

Phil developed a bad case of the gout in his left knee a few days ago and it is still not fully healed. His doctor believes stress brought it on. I'm also feeling a high level of stress. My mind is working overtime trying to process the enormous amount of information out there and while we're seeing improvements in some areas, we're still experiencing a lot of frustration.

DC