A Trial Run with the Goodbyn Lunchboxes

After researching ideas for helping Sean eat at school when he gets in Kindergarten, I decided to invest in a Goodbyn Lunchbox for him to use. I was looking for something that would be easy for him to manipulate, that wouldn't produce trash like disposable packaging, and that would be very kid-attractive. The other option I had considered was Laptop Lunches, which I've eyed for years but hadn't purchased. The pro's to Goodbyn is that it is a single unit piece so we don't need to keep track of lots of lids and boxes, plus Sean doesn't have the fine motor skills yet to open that type of packaging.

I wanted to get our Goodbyn's now so that we can work on using them over the summer and encouraging Sean to eat what we pack in them. I also bought one for Aidan to use on the occasional days he'd like a cold lunch so that he can serve as our peer role model. Siblings are nice that way. ;)

The order arrived very quickly and the boys were eager to start decorating their Goodbyn's. The only guidance I gave them was the suggestion to spell out their names on them, just in case anyone else happens to use a Goodbyn. Other than that, they both just had a blast designing their own boxes.






We went on a field trip with Sean's class to the zoo shortly after getting our Goodbyn's, so the night before the trip I decided we should take their lunches for a Goodbyn test drive. I put together lunches based on what we had in the fridge.

Here's Aidan's (top row: teddy grahams, pears & spoon, dried cranberries. middle row: ranch dressing, water bottle/napkin. bottom row: cheerio snack mix, ham & cheese "man" sandwich, carrot sticks.)


And Sean's (top row: yogurt, applesauce. middle row: water bottle/napkin. bottom row: ranch dressing, sliced bread, carrots.)


If I would of planned it earlier, I would of filled the drink boxes with water and put them in the fridge the night before to use as a cooling element. Luckily the weather wasn't that hot and everything was a good temp when we ate. I did learn that I need to make sure each cubby section is snapped down tightly all the way around, because there was a gap by Aidan's ranch dressing and it spilled over a bit. I also should put a straw in for Sean to use because he thought it was more fun to tip the water into his bread section than it was to drink it. I hope to gradually change him from yogurt cups to just eating yogurt/applesauce directly out of the box so he doesn't have to have help opening those.

The verdict: Goodbyn's hold a lot of food! The boys enjoyed picking things out to eat. Sean did pretty good for a first run: he ate several bites of carrot dipped in ranch, a couple bites of bread, a bite of applesauce, and half the yogurt. He was pretty distracted by all his classmates and the setting so he didn't venture into the meal too excited to eat. Aidan ate most of his food, we packed a bit much for him.

I've found a couple of Goodbyn blogs to follow and gleam ideas from: Goodbyn Lunch Ideas, a British working woman's blog, Leslie's Bento Blog, and Fun with Lunch.

Ummm, Whose Kid is This?

'cuz we are pretty darn sure that our Boy Who Eats Nothing can't possibly be knee-deep in a ketchup-soaked hot dog!

*please note that while vast quantities of ketchup and bun were consumed, the dog remained safely unharmed in this snarf fest.*

We've waited YEARS for this...

Sean took BITES.
Sean CHEWED.
Sean SWALLOWED.






FOOD.

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Not paper, or cardboard, or a book. Actual food. And he loved it. He ate probably 20 french fries all on his own. Hours later, when I went to the grocery store with Aidan, he asked Doug if I would get more fries for him.

Hot damn! I've never loved McDonald's as much as I do today.

Hold it right thar, Pardner!

this looks like a perfect spot for a nap!




Sean had quite an exciting day at school today. He was apparently playing with marbles and put one in his mouth. He has a habit of holding small objects in his mouth, then spitting them out. Bad habit, I know. Just this morning he was doing it to some blueberries. I am wondering if that's what made him think to pop a marble in. Unfortunately, he let the marble slide back to far and began to gag on it until he gagged hard enough to throw up the marble and his breakfast!

He gave his teacher quite a scare! She took him into the nurses office, who gave him a listen and thought he sounded fine, then called me to see if I wanted to take him in for xrays in case he swallowed another marble. I didn't think it was likely that he swallowed one, then gagged on another. He's been fine all day, but he did curl up for a nap with his buddies this afternoon.

This all comes off of the high of yesterday's report that he ate several bites of a peanut butter and jelly sandwich. I wonder if he's ever going to figure out what is safe to put in his mouth and eat versus what is not.

He Doesn't Have Celiac!

Yay! Sean's doctor just called with the initial lab results and he does NOT have celiac disease! She also feels he does NOT have reflux and doesn't need to be on Prevacid for it.

However, the red spot in his stomach tested positive for a bacteria infection called Hemicobactor Pylori. The treatment is a course of 2 antibiotics taken with Prevacid for 10 days 14 days. I'm not sure if he will need some sort of repeat test (blood work?) to see if it clears up. She said it appears to be in the early stages so hopefully we can treat it easily.

I asked her if she felt she needed to see him again or doing any other testing to look for physical causes for his feeding issues and she said no. She thinks it is something he will have to overcome thru feeding therapy. Sigh.

While I am somewhat disappointed that there wasn't a clear medical answer found, I guess I am also relieved that he doesn't have a life-long disease. The thought of living with those restrictions was overwhelming.

I guess we are back to square one- praying for him to overcome these aversions and encouraging his therapy. Thanks for everyone thoughts, prayers and advice.

Edited to add: I just picked up his prescriptions from the pharmacy and he is actually taking 2 different antibiotics 2x a day and Prevacid 1x a day for a course of 14 days. Wow! That will be fun.

Scope is Done, Researching Celiac Disease

Sorry I didn't get this typed up faster, but here's update about the endoscopy Sean had done this past Thursday.

Sean handled the stay at the Same Day Surgery Center pretty well. Mostly I just had to work on distracting him all morning from eating or drinking, as the surgery wasn't until 11:15 and he hadn't eaten since 9 the night before. I heard "Momma! Eat! Drink Milkies!" at least a hundred times in the 4 hours he was awake before the surgery. This is what Sean looks like when you tell him, "Sorry, baby, no eat yet."

Doug took Aidan and Ella to his office to try to watch while he worked and I took Sean to the hospital by myself. I packed his backpack full of things to try to distract him with while we waited. I thought it might be useful to list them here and I'd love to hear what fun things you pack for your kids in these situations. I always find out that I should bring x and maybe not y next time.

1. pull ups and wipes
2. food, spoon and sippy cup for after surgery- important to keep this hidden in a separate bag within the backpack. Otherwise it's just plain mean torture!
3. his lovey blanket, given to use when he was an infant at the Denver Children's Hospital. We use it for naps and it's been to every hospital stay.
4. a few favorite books. This time: Chicka Chicka Boom Boom, Brown Bear, Brown Bear, and The Big Red Barn.
5. 2 Disney Cars toys (McQueen and Filmore.)
6. 3 Madagascar action figure toys.
7. Woody
8. Blank sheets of paper and 4 washable markers.

I also tucked my keys, wallet and cell phone in there. I grabbed about $3 in quarters in case I needed to get a vending machine snack/drink for myself. Sean's favorite item this time was the markers and paper. He just loves coloring and having me draw things for him.

Anyway, the nursing staff was very nice and Sean charmed them. He throws a huge fit about those hospital bracelets, so I put them on his ankle so he doesn't obsess over it. They said he didn't need to wear a gown (very strange! never heard of that!) so he just went back in his clothes & shoes with his blanket. They didn't have to do an IV, just gave him a bit of gas and then did the test.

His doctor came out to see me about 30 mins after they took him and gave me photos she took to tell me what she saw. She said his esophagus looked wonderful and healthy- no signs of food allergy irritation or reflux damage. His stomach also looked pretty good, but had a small red spot that she took a biopsy from. She said it did not look like an ulcer and wasn't too concerned about that. She did find a bit of paper that Sean swallowed (he loves to eat books and must of chewed a bit off while we were waiting!) She said they suctioned it out and moved past it.

Then she got to the short bowels aka small intestine. She said "His short bowels are not healthy. I don't like what I see there." She pointed to white areas and said that she took 6 biopsies from there. She didn't say she knew exactly what it is, but is leaning towards Celiac Disease. She said she should have the blood screening results back on Monday or Tuesday and will call me right away. The pathology results take 10 days, so we won't know anything for certain for awhile.

When the nurses let me back to get Sean he was crying and asking for me. As soon as I held him he said "Momma Milkies! Drink Milkies!" I picked him up and wrapped him in his blanket and they had us move to a semi-private waiting area with recliners. He was also very upset because one of his shoes had come off and he wanted it back on. :)

We had a nice snuggle and milkies, then he ate 2 packs of food and snuggled a bit more. After about 20 mins he was alert and ready to move around. He wanted to look out the window, play peek-a-boo with a nurse, and say hi to everyone that walked by. Meanwhile, the other kids coming out of surgery are crying and generally very upset. I was having a hard time keeping Sean "resting" so they let us check out in less than an hour.

He did fine on the drive home and had no ill effects from the test other than being extra tooty from the air they pumped in him.

So now we are waiting to see what happens next. Of course I have been reading up on Celiac disease like crazy. I particularly like this link. I found this part of that article interesting:

The length of time a person is breastfed, the age a person started eating gluten-containing foods, and the amount of gluten containing foods one eats are three factors thought to play a role in when and how celiac appears. Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear and the more uncommon the symptoms.

We are having a busy weekend with family visiting to celebrate Eleanor's birthday, so that is helping take my mind off of the wait. I will try to post photos of her party soon!

So What's Going on in There?

Today, we took Sean to meet with a Pediatric Gastroenterologist. For some reason, in spite of his years battling GERD and his feeding issues, this was our first time seeing this type of specialist. It was really reassuring to talk with her, discuss Sean's history and hear "I think it's time we find out what's going on in there."

Interesting questions she asked:

Dr: Does he eat a lot of carrots, squash and sweet potatoes?
Me: Actually the only vegetable he eats is sweet potatoes and yes, he eats it twice a day.
Dr: That's explains why his coloring is so orange.

Dr: So how did he react with you first introduced milk to him?
Me: We first gave him cow's milk around 15 months old and he'd drink it then spit up cottage cheese. So we tried Lactaid milk and that had the same effect. Then we tried Goat's Milk and that stayed down a little better. Finally around 2- 2 1/2 he started keeping cow's milk down.
Dr: So what did he drink before he tolerated cow's milk?
Me: Breastmilk, almost exclusively. We used the Goat's Milk for minimal supplements since he digested breastmilk the best.

Dr: Does he drink Pediasure or some other fortified milk for nutrients?
Me: No, he refuses them.
Dr: So he's just been growing on the few baby foods and milk?
Me: Yes.
Dr: That is why he is on the smaller side of the growth charts. Those foods are not providing enough variety and nutrients to sustain long term growth.

(FTR, Sean is one month shy of his 5th birthday, weighs 34 lbs and is about 39.5" tall. He wears size 4 clothing for the most part, though he is tiny in the britches.)

Sean was super good for the appointment (he usually is good at appointments, must be a benefit of frequent Dr visits.) She brought up that food allergies can cause reflux-like symptoms and feeding issues. We also discussed Celiac Disease as a possible trigger for feeding aversions. She had us take Sean for a blood draw and scheduled us to return on Thursday for a sedated endoscopy. She said she will have the initial results of the endoscopy within a couple of days.

The best thing about the appointment was that she feels there is a physical reason Sean has developed his feeding aversions and she is going to be active in finding it. YES!!!!

We want to see more of this (ignore the fact that his shirt is soaking wet from his fabric chewing addiction):


And we'd love to see this disappear (btw, that is about a week's worth of food for Sean. He makes up in quantity what he lacks in variety.)

The Swallow Study was Today

Okay, okay, so I am slacking on the blog still. Sorry! I updated about Sean's swallow study on Facebook, but thought I should post it here for those that wanted an update.

They had 2 radiology drs in the room doing the study, as well as a speech therapist and 2 lab techs. Sean was very comfortable with them and did great. The team was super friendly and comfortable with kids, had lots of toys in the room to distract the kiddos. Sean was in love with the 2 talking Scooby Doo stuffed dogs and the Tickle Me Elmo. They even blew bubbles for him and he was just charmed! I got him to take 3 swallows of the liquid and 3 bites of the barium pudding. They added strawberry flavoring to it and I told him the pudding stuff was yogurt. :P He refused to try the barium coated graham cracker (yuck!) but they thought that was fine.

The drs said that they got good views and did not see any signs of aspiration, but would look thru the scans and write up reports for my dr. They said a Ped GI dr might ask for further testing, but they didn't see anything that looked concerning. It was just a modified barium swallow study so it didn't look for how things travel to his tummy, etc. In order to do that, they'd have to put an NG tube in him since he'd have to consume a lot more barium. So for now, this is the info we have. I have to get a referral to a GI dr and go from there.

The Speech Therapist said that we should see a ped GI and see if he improves after a month of Prevacid. They mentioned that there is one Ped GI doctor in Wichita, otherwise we could go to Children's in KC or see a group in OKC. She didn't have orders to do a feeding evaluation, but said we'd be welcome to come back again if our doctor wants that done. She said that it would be best to see a GI specialist first to see what he'd want to do. She also feels that Sean's feeding issue are based in physiological causes, probably reflux. We talked about how his therapy has been going at school and what options are available where we live.

After all that, we went to the hospital cafeteria and had soul food for lunch (fried catfish, cornbread, greens and cabbage.) Sean finally got to eat and was so happy to see his food. :)

I Scream, You Scream....

we all scream for ice cream! Especially SEAN! Woo hoo! Friday night we went out for cones after Aidan's kindergarten program (which was awesome! He did a great job!) and Sean swiped my cone from me. He went to town on it! So we shot a little video of the boys enjoying cones and being silly on our porch.

Pork Chops and Applesauce!!

Well, maybe not pork chops YET but Sean's teacher sent home a video of Sean self-feeding applesauce today! He fed himself three bowls! Woo hoo! Granted, applesauce isn't a big stretch in the texture aversion issues he has, but it is a new flavor and it is somethig that 1. other kids/people eat 2. is available in many resturants and 3. isn't manufactured by Gerber. :)

Go, Sean, that's my big boy! Go, Sean!

There's a couple parts where you can see him grimace it down, but overall he must of loved it. After his usual lunch today, he asked me to give him a slice of bread. He wanted Ella to hae one too, so I tore it in half for them to share. He took a few tiny nibbles out of his, chewing and swallowing them down. I am really starting to feel some hope that he is going to be able to eat regular foods by the time he starts kindergarten. One more year of preschool to keep working on this and I think he is going to do it!

Banana Before Bed

Okay, maybe he is starting to get this food thing!


Aidan was yelling at his video game in the background on that. Let's try this again without Aidan's antics.


Of course, Sean insisted on a whole banana to himself, like Aidan had, then only had a few nibbles. Mommy got to eat the rest.

We met a family yesterday for a playdate that has a new baby with Down syndrome, then we all went to lunch together at McDonalds. Sean ate lots of ketchup off of a fry, then he took Aidan's cheeseburger scrap and dipped it in ketchup for a while. He took a tiny bite of the cheeseburger bun as well! I showed him how to dip the apples in caramel and tried to get him to taste that, but he told me no. When I went to sit down at the other table, we all saw him take an apple, dip it in caramel and try it. Apparently he wasn't too excited about it, as he stuck the rest of the apple back in the bag. LOL I will probably start letting Ella experiemnt with solids within the next couple of weeks and I think I will just sit them both in their booster chairs at the same time and have "Food Play Time." Peer pressure has to have some benefits!

Speaking of eating, what's on your Super Bowl menu? We are just hanging out at home and having Doug's brother over for the game. Here's our game munchies:
Boneless Hot Wings
Pizza Rolls
Baked Potatoes with the Works
Little Smokies in Pinapple Sauce
Spinach & Artichoke Dip with blue corn chips
and of course, beer! I requested some PA beer, so we got some Rolling Rock.

Game on, folks!

Does this Count as a New Food?

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Christmas Photo Album

Not only did my mom drop the hint that I need to update, but even Doug asked why I haven't yet! Sorry! I feel like I am still in Christmas recovery mode. Rather than posting loads of details, I will post loads of pics. We had a fabulous time with both sides of our family. The kids were spoiled rotten as usual. Food was wonderful, company was fun. I even got to have a girls shopping day with my mom and sister, plus a movie date to see Marley & Me. (Miss Ella Roo came along, of course.)

Oh, and thanks to my blogging comments, I got a sewing machine for Christmas! Woo hoo! I am eager to start learning how to sew. Okay, on with the show.

All three kiddos just love their Santa gifts. Good job, old man!
Santa brought Ella a jumpy, exercising thing.


Santa left Sean a box full of wonderful Wiggles stuff: Captain Feathersword, a Wiggles V-Smile game and a Wiggles DVD.


Santa brought what Aidan asked for, a Playstation 2.


Ella gave her "Super" big brothers something special, custom capes.




Nana and Papa gave Sean a V-Smile Motion toy. He loves to try to play it, but doesn't quite have it figured out yet.


Ella needed some napping breaks.


Grandpa and Gramma decided to torture me encouraged Sean's musical passion with this keyboard/karaoke machine.


Doug's brother, Curt, gave Aidan his MOST.FAVORITE.GIFT. ever. Yes, we are bad parents, we let our 6 year old play a game for adults. I have no excuse for why we do.


Eleanor got her first doll, from Nana. Nana said she couldn't resist because it looks like E, with the blond hair and blue eyes. Nana also got her the pink Bumbo chair. Luckily, Ella's big thighs still squeeze in there.


Of course, they got more than this, but I don't want to bore everyone! Let's just say we are very blessed to have so many people that love us and love to see our family happy.

Oh, and one of the greatest gifts this holiday: Sean took communion at Christmas Eve service! He ate all of the wafer that was given to him and was so pleased with himself. He rubbed his tummy and said "Yum Yum Yum!" Spectacular! Then on Saturday he stole Aunt Tanya's chair from her at dinner and nibbled on the cheese on her cheeseburger, dipped fries in ketchup & sucked it off, and ate 3 grapes (chewed them even!) Amazing amazing amazing!

21 New Facts about Sean

I noticed some of my blogger friends made updated lists on this topic from last year, so I decided to follow suit. I am such a sheep. Here is the list from last year. Some things remain the same (like all of the eating issues, sigh) but there are new things too.

1. Sean's vocabulary has really increased this year. He is usually willing to try to repeat words you say, though they do not always come out clearly. He calls more people by their name now, which Uncle Curt appreciates.

2. Sean's a little water boy. He had so much fun this summer whenever he could get in a pool. He dunks his head underwater and tries to hold his breath.

3. He can drive the PowerWheels Jeep in forward and reverse, but doesn't steer too great yet, so watch your shins! He also likes trying to ride the trike.

4. He's can walk up and down stairs while holding on the the rail or steadying himself with a hand on the wall. He's still timid about going down them, but is getting braver. Maybe the seat of his pants will stop getting so worn out now!

5. He is very interested in using the potty but hasn't gotten his body signals worked out yet. He is finally tall enough that he can try to pee standing up. :)

6. He discovered at school that he likes apple juice. We just drink water or milk at home, so juice is a new treat for him.

7. He drinks very well and (mostly) responsibly from a straw cup. He drinks well from an open cup or water bottle, too, but tends to dump the remaining liquid out asap after taking a sip. Therefore we stick to straws and lids.

8. He will not drink milk unless it's in a sippy cup. He tends to throw those after he's done, so it's a good thing they don't spill.

9. He's a budding actor. He loves to act out his favorite scenes in his movies. One of his favorite movies is Ice Age and he acts out large chunks of it amazingly well!

10. He also loves to shake his booty. He dances along with the tv or stereo. He likes to watch his reflection when he dances- either in the tv, glass door, or dining room mirror. If you block his view of his performance, he will tell you "No, no, no" and move you out of the way.

11. He has two favorite songs: Queen "We will Rock You" and the Spongebob Squarepants Movie song "Goofy Goober Rock" with a drop in from Diamond David Lee Roth. Sean plays a hot air guitar solo for each of these songs.

12. Another new talent is singing. He is slowly throwing in words to songs he knows. He especially likes some of the ones they use at preschool to teach things, like The Days of the Week and Who Let the Alphabet Sounds Out.

13. Sean is starting to teach his baby sister sign language. He moves her arms to try to make her sign things like "more" "bye bye" and "cow".

14. Sean likes all kinds of animals. His recent favorites are monkeys. He still loves elephants, cows and dogs too.

15. Seeing his parents and brother at the computer so much has sparked Sean's interest in them too. When Aidan plays a game, he shows Sean a button to push to make a certain action occur (like jumping) and lets Sean be in charge of that button. Sean likes to play Polar Bowler, but usually ends up with all gutter balls.

16. Sean can now make the thumbs up sign and, conversely, the thumbs down sign to which he adds the verbal "boo! boo!" This comes in handy while playing computer games.

17. Who says white boys can't jump? Not Sean! He clears both feet off the ground now and gets a good 4" of gravity defying bounce when he jumps. He loves to jump, too, will jump several times in a row whenever he sees something jump.

18. Sean still loves The Wiggles and can identify all of them. He also loves The Backyardigans and can identify them as well.

19. He is beginning to recognize more letters and knows some colors. He recognizes his written name and when I say "Sean lets write your name. S E A N." He makes separate marks for each letter as I say it and tries to spell it with me. His writing is still very scribbled but he can make lines and circles now.

20. Sean likes to take showers and identifies them with Daddy. When he wants to shower, he gets in the shower, does the bath sign and says "Daddy?" He sees Daddy take a shower every morning while I get the kids ready for school. I take my showers while he is at school so I guess he thinks I don't bathe much since he only sees me shower on weekends.

21. Sean continues to grow into the most beautiful little man, with gorgeous long eyelashes, stunning blue-green eyes, and the sweetest kisses. I look forward to seeing what new things he learns and loves in the next year!

Sean the Episcopalian

Every Sunday that we can, we bravely take our trio of kids to church. Our church has a children's service that runs upstairs during the adult service, but Aidan and Sean are not willing to go up there without one of us. Sometimes Doug or I will take them upstairs while the other enjoys the service downstairs. Usually we just sit in a pew near the back and hope to keep them quiet enough to last through the service.

The boys have made a several adult friends at church, one in particular is a lovely woman in her late 60's/ early 70's named Jen. Jen always is eager to see the kids and chats to them. She makes sure Aidan gets his fill of brownies at coffee hour afterwards.

Today, Aidan asked to sit with Jen at church, armed with a coloring page and color pencils. She sits in the row right behind us, so it was no problem to keep an eye on him. Soon enough, Sean wanted to join them. She was so good with him, reading him stories, helping him color. He flirted with her and the ladies in the row behind her. When the priest came down the aisle to shake hands and say "peace be with you", Sean extended his hand like a gentleman. Eventually he wandered back up to me, passing another boy on the way. He reached over the pew and rubbed the little boy's head in a fond, puppy way.

When it was time to go up for communion, Sean led the way, smiling and saying hi to everyone. Since Sean doesn't eat table foods, we don't allow him to take communion for fear he'd throw it or do something inappropriate with it. Unfortunately, he is determined to try to get this little round item that everyone else it getting. He stands there, ever so patiently, with his hands cupped. I try showing him to hold his hands folded in prayer instead, but he insists on extending his hand to receive. Luckily our priest knows that Sean isn't ready to receive yet, so he just shakes Sean's hand then says a prayer while touching Sean's head. Sure enough, when Father M moves on, Sean states "Me? Me?" while still extending his hand. I say a quick prayer with him, then guide him back to our seats.

I wonder what to do, am I doing the right thing by not letting him try to take communion? It's possible that he might actually put it in his mouth, as he seems so eager to follow what he sees everyone else doing. He has been taking a few small bites of food at school (but won't for us) so he *might* swallow it. My fear is that once it's in his mouth he will realize he doesn't want it and spit it out in front of the whole congregation. It's not like I can get one to give to him in private to see how he'd react.

I feel so bad for him about his food issues. I can see that he wants to be a part of the social aspects of eating but is just afraid to try. He loves to follow along a buffet line. Today he waited in line at church (by himself, I was sitting with E and Doug was talking to someone) for a piece of cake. He got his plate with a big chunk of cake on it and gingerly walked to our table. Part of me watched him with pride, he was so careful and looked so grown up. The other part of me thought, "people are going to think we are being wasteful, they have seen that he never eats here." When he got to the table he gave the cake to Aidan, cutting off bites with a fork and trying to feed it to Aidan. He even offered a forkful to Ella. I pray every week that he will make this leap past his food issues and move forward.

Sean has made his own place in our little church community, just as Aidan has. It delights me to see them welcomed and wanted equally. I grew up with church as an important part of my life, as did Doug, and I can't help but think ahead of today about how the boys will grow in our church. Eventually, they will be able to settle down and pay attention to the service. Eventually, they will sing and pray along with us. Eventually, Sean will eat that piece of cake himself, just as he will receive communion. I have faith that God will help Sean reach these goals, just as He will help guide all of us.

A Lick! A Bite!!!

Major breaking news story!

Friday, when I picked Sean up from preschool, his teacher said "Sean took 3 bites of chocolate pudding today!" This is the most he has eaten at school, where he gets feeding therapy daily with an occupational therapist. They have been working on getting him to take one "try me" bite of whatever the other kids eat. Friday's success was very exciting for all of us. Aidan and I applauded Sean and praised him for being such a big boy.

That evening, Doug ran some errands and brought back three chocolate cones from DQ. Aidan, Doug and I were eating them and Sean showed interest in pretending to eat a cone. Doug offered him a taste of his cone, and Sean grabbed onto it with both hands. He took a little lick, with a big smile, hanging his tongue out to show everyone his taste! We all clapped and said "Hooray!" while rubbing our bellies and telling Sean "Yummy yummy!" He closed his mouth and signed yummy yummy back to us, then grabbed the cone for another lick. Again, he turned to his fan club for encouragement and we gave it with enthusiasm. He took one more lick, then decided that was enough for one day. WOW!

Sunday afternoon, Aidan and I were upstairs and I saw Sean WALKING up the stairs with something in his hand. (Normally Sean prefers to crawl up the stairs unless some one is next to him to spot him.) When he got to the top I saw that it looked like he hand Aidan's cheese & crackers snack he was eating earlier. Sean said "Aidan! Aidan! Eat!"

Aidan discovered that Sean had just brought up two crackers, so he took one and offered Sean the other. Mind you, usually when we offer Sean food he says "no no no" and throws it. This time, Sean kept the cracker and watched Aidan take a bite of his. Sean put the cracker up to his mouth and looked at us. We said "Yummy! Have a bite, Sean." Sean took the tiniest little bite and awaited applause. He held the little bite between his lower teeth and tongue, but didn't dare close his mouth. We congratulated him on his bite and encourage him to chew and swallow. Instead he took another tiny bite. Aidan said "Wait a minute, Sean!" (and then Doug's favorite Kramer line) "These crackers are making me thirsty." Aidan ran downstairs to get drinks for them, and brought them back up. Sean took one more tiny bite, offered a bite to me, then decided he was done and put it on the dresser. He still hadn't closed his mouth or swallowed the crackers yet, so he trotted over to the bed and spit it out on the bed. Nice, huh?

Well, he may not have eaten the cracker, but taking a bite is a big step for him. So far all he's been willing to do is lick them at school. I felt like I did whe he took his first step, like we were finally at the beginning of the end of baby food. I felt hope that he will one day eat like everyone else.

I cleaned up the bed, then returned the remains & drinks to the kitchen. I told Doug what happened and he said "Aidan's crackers?" I said yes. He said "I just threw those in the trash a few minutes ago. I saw Sean messing with the trash can, I guess he got them out of there."

Oh dear. We are dumpster divers.....

Worth the Hassle

As I have written about before, Sean is only willing to eat baby food. He has a very specific list of what he is willing to eat. The only cereal he eats is Del Monte's Rice with Bananas and Apples. Unfortunately, our neighborhood grocery store and Target quit selling this cereal. Now we are forced to make a trip to WalMart to buy his breakfast every week. Doug and I detest going to WalMart, especially Super WalMarts. They are so crowded, big and annoying to shop at. It's as far from our house as you can be and still be in the same town as us. We make the trip with full knowledge that it will be a hassle.

This past Sunday, the four of us loaded up in the car, wearing our Sunday slumming around the house wardrobe. We arrived at 11 am and as soon as we walked in the door, Aidan insisted he was starving for a Subway lunch. Sigh. So Doug and Aidan sat at Subway and I put Sean in the cart to race back to baby food.

On the way there, I saw a mother and her daughter chatting to friends in the aisle. I did a double take because I noticed the daughter, a young adult, had Down syndrome! Aside from when we take Sean and Aidan to school, we rarely see others in town with Down syndrome. Of course, like any mom with a kid with Ds, I whipped around the aisle to stroll back by for another look, hoping to catch their eye and smile, say hello, flash off Sean. Darn, they didn't notice us.

Went back to get the baby food, only found 4 jars of it on the shelf. Double sigh. This means we will have to come back in less than a week to re-stock. Darn you, WalMart!

Cruised back by the mom and daughter, tried to get Sean to stop gnawing on the shopping cart handle so that he could give them a big hello. Nope, they didn't notice us again.

Paid up and went in to Subway. I heard the overhead announce that Santa was in the seasonal dept and asked Aidan if he'd like to say hi to Santa. He quickly packed his food and his mouth and cleaned up.

Head waaaaaaaaay back to Seasonal Dept and see that Santa is sitting on a throne made of 24 pack Pepsi cans and has a giant 7Up Christmas tree behind him. We asked Aidan to go say hi, and he buried himself in my back. Santa held out a piece of candy and said, "Hi Aidan, want to come talk to me?"

Aidan the Chocolate Addict slowly inched his way up there. Santa asked him a few things about how he was and asked "what would you like for Christmas?"

Aidan replied "I already sent you a letter, Santa!" As in, "don't you read your mail?"

Santa chuckled and said, "Yes! I got your letter, but I'd like to make sure I got it right. Can you tell me again?"

Aidan told him he wants the Webkinz Police Dog, even though he got one for his birthday already. He wants to give it to Kenzie. He also wants a big Hot Wheels racetrack.

Santa asked if Sean would like to say hello and Sean climbed back into my womb. The photographer said, you can all go up there and take a family pic together.

oh dear.

So we did.....



How's that for Fugliest Family Photo of the Year? shudder!

We finally convinced the boys to leave and headed out. We saw another mom shopping with her 8-ish year old son with Down syndrome on the way out the door! What the Heck! Talk about timing! Guess it was worth the hassle after all.

21 Facts about Us

I know you are probably interested in hearing a Buddy Walk recap, but I am waiting on more photos so I can put together a post with thoughts and photos. In the meantime, I will follow a suggestion from one of the other 31 for 21 bloggers and make a 21 facts list.

1. Sean is a vegetarian, but the only vegetable he eats is sweet potatoes.

2. Sean has oral aversions that we our working on overcoming by doing feeding therapy. He only eats a minimal variety of baby foods and certain yogurts.

3. Part of Sean's oral issues, is the fact that the muscles in his mouth have low tone, making it difficult for him to move food properly to chew. His mouth is hyposensitive (this means that he can not feel food/liquid in his mouth very well.) He feels the need to pack it full in order to feel it so he can then move it around to swallow. This is why he enjoys packing tissues, wet wipes or other objects in his mouth. It gives him the sensory input he needs to feel things in his mouth. He has difficulty drinking from an open cup, because he needs to fill his mouth full of liquid before he knows it is in there and needs to swallow.

4. Sean has developed a very strong gag reflex in defense of foods because he does not want to choke on textured food. If we have been successful in getting him to chew a piece of food (like a pea) he spits it out after a bit because he does not trust his ability to swallow it without harming himself.

5. Sean has had reflux since birth and was only a daily medication for it until he was 18 months old. The last swallow study he had determined that he moves liquids very slowly to his stomach because the muscles in his esophagus are weak/have low tone.

6. Trying to overcome Sean's feeding difficulties has been one of the most stressful aspects of parenting him. It has caused feelings of anger, hurt, disappointment, fear, embarrassment, and frustration.

7. It costs $35 a week to feed Sean the food he is willing to eat.

8. Sean has been breastfed since birth and continues to breastfeed at age 3. Breastmilk does not lose it's beneficial properties as the child ages. The less the child consumes, the more concentrated the nutrients in the breastmilk become.

9. Sean nurses an average of 4 times a day. Once before nap, once after. Once at bedtime and once in the morning. He night weaned himself this summer, so we usually get to sleep thru the night now.

10. Breastmilk is said to increase IQs by 3-5 points. The longer a child breastfeeds, the greater the cognitive benefits. UK Study results

11. Sean is not on any of the vitamin regements that some parents give their children with Down syndrome.

12. Sean has been learning sign language since he was 10 months old (when he started sitting independently.)

13. Sean made his first sign when he was 15 months old. The sign for 'more'.

14. The sign Sean uses the most is 'eat', which he also says at the same time.

15. The longer it takes you to respond to his request for food, the more he signs it and says it. EAT! EAT! EAT!

16. Sean is currently picking up animal signs, his favorite is 'elephant'. He also makes an elephant trumpeting noise as he signs it.

17. Sean adores the Wiggles and does the hand motions for many of their songs.

18. Sean's all time favorite Wiggles song is 'Hot Potato'.

19. Sean's Nana is a Wiggles enabler. She has bought him 7 Wigles dvds.

20. Nana also just bought him the complete set of Signing Times videos. Mommy is hoping Sean becomes a fan of them because the Wiggles are getting very tiresome.

21. As Sean is nursing to sleep at night, I often see his little hands signing away in his semi-sleep in the darkness of our room. Most of the time, he is signing Wiggles songs.