We had a GREAT Weekend!

Hi!

We enjoyed our last weekend here in Baltimore. Mark, Emma, Evan, Ethan and I took in the Baltimore Science Center on Saturday. We saw 'Chinasaurs' and had fun with all the interactive science displays. We fed Ethan lunch in the cafe at the museum and he managed to spit only the first few bites of the non-preferred food.

We had tickets to the Orioles/Blue Jays game on Saturday night, but didn't actually make it to the game. Mrs. Southwestern PA (at least I think that's what her sash said) came to RMH and hosted a cupcake decorating contest. Emma and Evan participated, but Ethan bolted once he saw that the contest involved actually touching a real food. He's never had a cupcake or icing. (Still not sure where that gene came from!) Emma came in second place in the decorating contest with her creative use of heart candy and walked away with a new deck of UNO cards. The kids were completely wiped out after the contest, so we sent Mrs. Southwestern PA, her hubby and two kids to the Orioles game in our place.

Today we drove down to Washington D.C.. The drive was beautiful, much easier than we anticipated. We parked near the National Mall, stopped into the Air & Space Museum, the American History Museum, walked to the Washington Monument, the WWII Memorial, the Lincoln Monument and the Vietnam Memorial. Then walked back again. Ethan took a meal on the National Mall and spat only the first few bites of the non-preferred.

His spitting is getting better and seems to be limited to the first few bites of the non-preferred food since we switched to a new protocol.

The kids have bathed and are now in bed. Mark, Emma and Evan will drive home tomorrow. Ethan has one more day in the program so Ethan and I will drive home on Tuesday. We can't wait to be home and see everyone!

See you all soon!
Mark, Molly, Emma, Evan & Ethan

Thanks for the cookies!

Hi Everyone,

Mark brought Emma and Evan back from Philly today so I have to make this short! Ethan did a fantastic job with his feeding today, not too much spitting and he ate fairly speedy! Good job Ethan!

Also, I wanted to say thank you to our friends Mark, Jennifer and their boys. We received TWO big boxes of homemade cookies! We were notified by the office after I blogged last night. What a great surprise! I took them right to the kitchen where there were several folks still eating a late dinner. Everyone loved the cookies. I even took some to KKI today where the feeding families also enjoyed them. Funny thing, peanut butter cookies are my friend's favorite. She was so excited! I packed a bag of the peanut butter cookies for her trip home because her son graduated from the program today!

Thank you Mark and Jennifer and boys!
Good luck to S & D! We will miss you!

Have a great weekend everyone!
Mark, Molly, Emma, Evan and Ethan

Two program days left!

Hi Folks,

We've been tweaking the feeding protocol this week, yet the spitfest continues. This morning Ethan threw us another curve ball. This kid is something else. Mark, Ethan and I are in the small feeding room at breakfast. Ethan and I sit facing each other across a small table. I am the feeder. Mark is observing on Ethan's right, facing Ethan. I am decked out in a lab coat which serves as a spit shield for my clothes. Mark is in street clothes because he is out of Ethan's regular spit range.

Ethan breezes through his meal until there are only sweet potatoes (a preferred food) and peanut butter and jelly (a non-preferred food) left on his plate. I prompt Ethan to take a bite, he fills the spoon to the max, pauses for a moment, then launches the spoon through the air at Mark. Direct hit. Mark is covered in sweet potato splatter, but, due to the protocol, he cannot react in any way.

That was new.

Ethan proceeds to work his way through the last two food items by alternately spitting bites at me and then at Mark. I was lucky to have the lab coat for protection. By the end of the meal, Mark was completely covered from head to toe in spat breakfast. It was so bad, he had to go back to RMH to change his clothes.

We geared up for lunch, dinner, and snack in full protective garb, lab coats, facial shields and gloves. The meals continue to be spitfests but we are making some progress. (Just for reference, it is practically impossible to keep a straight face while wearing this getup in the feeding room!)

Tomorrow is a busy day for us. We have our final team meeting where we get the final report on Ethan's progress. (Including spit rate, no doubt!) We also have an appointment with the PT team for a new footbrace recommendation. Hopefully we'll see improvement (a decrease) in the spitting during the meals.

I'm most excited because Mark is going to Philly to pick up Emma and Evan tomorrow afternoon. We'll finally be together! Yeah! We have a big weekend planned then we head home next week. We can't wait to see everyone!

Have a great night and a great weekend if I'm not able to blog tomorrow night.
See you soon!
Mark, Molly & Ethan

McDonald's Fried Chicken and PB&J Puree

Hi,

Some things are just plain odd. We had a session in food prep this week. We learned how to puree Ethan's foods. Do you know you actually make a peanut butter and jelly sandwich, break it into small pieces, put them in a blender, add water and then blend into a puree? Why not just put the bread, peanut butter, jelly then water directly into the blender? Weird...but not quite as weird as what was going on in the RMH kitchen when we got back from KKI today.

McDonald's workers, in their uniforms, were cooking our dinner. From scratch. It was delicious, but very, very odd to see McDonald's workers frying chicken and mashing potatoes. They also made a delicious chocolate bundt cake. Yum! (Ethan got PB&J puree. He doesn't know what he is missing...or maybe he does, it was another spitfest!)

I cried at the dinner table tonight. Mark thinks I'm nuts. I probably am, but the presentation touched my heart. One of the RMH board members addressed the families tonight. She had with her, 3 University of Maryland police officers. We see these police officers every day. They are stationed on our block. There is the cutest police station in a very old and adorable building around the corner. Think quaint victorian. It really is adorable! There is also a one man police hut on the corner, an officer who rides up and down the block on a bicycle, and another who guards the crosswalk. That's alot of officers for one block. There are also a lot around the Johns Hopkins Medical Campus. Baltimore has a lot of crime, so it is very nice to have the police presence. Well, back to my story...

The presentation was about these police officers and how they care so much about the kids and familes who stay at the Ronald McDonald House. They watch us when we leave to make sure we are safe outside. It was very touching...but that's not why I cried.

This is why I cried....The officers partnered with a local middle school to collect books for the RMH and families. They brought 4,000 books to the house tonight. I'm not exaggerating, they really collected 4,000 books...for families like US. I mean, really, who wouldn't cry about that?!?! The generosity of people is simply amazing. They put out the word and the students collected FOUR THOUSAND books. That's a lot of books!

Ethan LOVES books, all three of our kids do. I said, Hey Ethan, there are books downstairs. Do you want to read? He was off like a flash. He grabbed a few books, found a comfy seat and was in reader heaven this evening.

Ahhh, life is good. More fun tomorrow. Have a great one!
Mark, Molly & Ethan

Spitting Continues....with only 4 program days left!

Howdy,

The spitfest continues. Ethan moved on to spitting preferred foods today. Sweet potatoes were everywhere at dinner, peanut butter and jelly was everywhere at breakfast and lunch. Mark is feeding Ethan a snack as I write this...I'm kinda afraid to go into the RMH dining room right now.

This spitting thing is nuts. It's what he was doing the first 2 weeks in the program. We can't go home like this so we have to have a protocol change tomorrow. I have no idea what will change. This kid is one tough cookie. Smart and stubborn. We are in heaps of trouble with this one!

For those of you who are writing comments, I'm actually answering you in the comments. Fran, we did have our appointment with Dr. Duke Cameron, heart surgeon extrodinaire (ok, I know I can't spell...) He was wonderfully warm and friendly! He took Ethan's history, explained his odd heart setup (only 5% of the pop has this), indicated that his rogue artery, which is impinging on his esophogus could be causing his feeding issues and he ordered a CT scan under sedation to get a better picture of his heart. I wrote a blog about this last week, but it got lost when I hit the 'publish post' button and I didn't rewrite it. That's why there is a heading with no blog out there.

We're still waiting on the scheduling of the CT scan. Considering the fact that we only have 4 days left, we may have to do it next month when we come back for a followup appointment or we may do it when we get back to Cincinnati. Not sure if it is a coincidence, but since we went to the appt with Dr. Cameron Thursday we've had 4 automatic calls from Cincinnati Children's Hospital saying they request a cardio appointment for Ethan.

Not much else to report. I'm a little bummed about the number of new foods. Ethan has 8. His buddy has close to 30 and the little girl who left the program the day we arrived had 45. I know I shouldn't compare, but it's hard not to. Their foods are real texture, not pureed. I see a lot of blender time in our future.

Have a great night!
Mark, Molly & Ethan

PS.. Mark just came in and said snack went well. Only 1 spit. That is wonderful!

Spittle Spit Spat

Hi Everyone!

We've been slacking quite a bit on the blog, sorry. It seems we have no extra time now that we're feeding Ethan. (Dang, it was sooooo much easier when we got to watch from the observation room!)

We have a new food today, pureed peanut butter and jelly! We thought Ethan would love this, but we were wrong.

The spitfest started at breakfast and continued through the day. Ethan is served 3 pretzels, 3 goldfish crackers, an 8oz. glass of strawberry milk, and 4 food items. He breezes through the snacks, milk and preferred food items. This means he eats the applesauce, pears, yogurt and sweet potatoes with no problem. The thing is, he is served one least preferred food with every meal. The least preferred foods are spinach souffle, chicken nuggets, pork and beans, and now, apparently, peanut butter and jelly. Foods are rotated at meals. Ethan uses spinach souffle to trick us, sometimes it goes down smoothly, sometimes it's a spitfest.

Today was a spitfest.

Spinach souffle was served at breakfast. Every single spoonful was spit--directly at me. Well, in case your imagination is on overdrive, yes, pureed Spinach souffle looks like bright green goo. Think Nickelodeon slime, just a shade darker! As the feeder, I have to keep a straight face and not react to ANYTHING Ethan does during feeding. This is way, way, way easier said than done! I was chugging along, spooning in the green goo. Ethan was chugging along, spitting out green goo. I had green goo spots all over my clothes, hair, glasses, it was on the table, the floor, you name it. Then I got a case of the giggles. Dang those giggles! I was fine until Mark said 'It's a good thing you wore white today!' And I lost it. I had to turn away to keep from laughing in Ethan's face. When I later 'fessed up to laughing, the feeder said she wondered what I was doing. They couldn't tell from the observation room, whether I was upset or laughing when I turned away.

Mark took lunch. We tried peanut butter and jelly puree for the first time. Ditto on the spitfest.

I did the dinner feeding. Peanut butter and jelly again. Spitfest again.

Mark just finished the snack, which is basically the same as a meal except it has no drink. For once today, Ethan did not spit....and it was spinach souffle!

Hopefully, he's rounded a corner on the spitting! He has been spitting at meals for about a week and a half now. He's smart so he knows each time he spits, we lose some of the food and he has less to eat. Little booger.

This past weekend we went to Philly again to stay with Mark's sister. This time Emma and Evan were there. It was gorgeous! We relaxed around the pool while the kids swam. Ethan even warmed up enough to go into the pool by himself. And he didn't scream - too much-- when Mark tried to get him to float. (The Woodfield pool crowd will get the significance of that as they've listened to Ethan scream at the pool for the past two summers!)

The weekend was great, but we are very anxious to get home. Next weekend we'll stay in Baltimore. We want to go to the Science Center, to an Orioles game, and down to DC on Sunday. A friend of mine from high school is also slated to stop by with his family. They're on vacation and are going to drive through town on Saturday.

After that, Ethan will have one more day in the program next Monday and we'll drive home on Tuesday. That's a total of 5 more program days. I hope they go fast!

Have a great night!
Mark, Molly & Ethan

The countdown is on!

The novelty of being here has worn off!

Hi Folks,

The novelty of being here has definetly worn off. We just finished another pack and spit meal. Lovely. We have to feed him 5 times per day and each feeding is taking between 20 - 50 minutes, not including the setup and cleanup.

A friend of ours, who very nicely finished painting the trim on our house, sent a picture to us of the finished product. I am now officially homesick! Our house looks great Tommy! Thank you! Thank you too, Peter, for cutting our grass! You guys rock!

We had our swallow study today. Ethan was very cooperative. We still need the final report from the Speech Therapist, but I don't think they found any problems. Good thing!

We have our much anticipated cardio appointment with the highly rated Duke Cameron, MD on Thursday morning and then it's just a few more foods til we're home. Our official discharge date is July 13th. We can't wait! It will be nice to have our whole family together again and back home.

Please keep one of our families in your prayers. Normally, I try not to include names, but this kid has been in the news alot so I'm sure it's ok. KKI has a lot of different intensive programs for kids with disabilities. We met a family whose 5 year old daughter, Margaret, was in a car accident on January 2nd. She broke her neck, among other bones, and has had quite an uphill battle. She's been in various hospitals since the accident and FINALLY got to go home today. Her family is going to have a lot of hard, hard work ahead of them, but they are fighters. Please send your prayers their way.

If you want more information about this beautiful girl and her family, her blog is www.caringbridge.org/visit/margaretromph

Have a great night!
Mark, Molly & Ethan

Pics of the Hot Air Balloon from Saturday Night

Mark and Ethan watching the balloon land.





The balloon coming in for a landing.

Whew, what a weekend!

Hi everyone!

Ethan is smart. Of that I have no doubt. He was cruising along with the feeding program, eating new yogurts, sweet potatoes, mac n cheese, spinach souffle and then....BAM! Along came the pureed chicken nugget.

Pureed chicken nugget, you ask. Yes! Because we cannot rule out a medical basis for his eating issues, and because he hasn't had a swallow study yet, and because he doesn't actually have a history of eating 'real food', and because he apparently has an issue with lumps in his food (a genetic trait inherited from his dad), all of his new foods have been in a puree state. Puree means it is stuck in a blender with some type of liquid and blended until it looks like a soupy pudding. No lumps, no bumps, no idea what it actually was in its previous state except for the label on the container.

Enough about the puree ideology, and back to Ethan being smart...This week Ethan was introduced to pureed chicken nugget. Chicken nugget a la puree looks like light tan paste and smells like barf. I gag when I have to feed it to him. (I'm not allowed to show that I'm gagging, so I have to gag to myself!) He gags when it is fed to him. (So... not... helping with the whole gag to myself thing!)

The wonderful protocol that helps Ethan eat appears to be no match against pureed chicken nugget. Ethan has learned how to 'pack'. This means he takes the bites using the protocol (good boy) but he won't swallow. He did swallow at KKI during the week, he just started the 'packing' with us over the weekend...I think he knew we wouldn't know how to handle that without the KKI staff! Smart kid!

So, we're at his sister's house for the weekend, feeding Ethan in a beautiful, no, make that a gorgeous kitchen, and we notice that Ethan is no longer swallowing. We picked up on this subtle fact because Ethan's cheeks got bigger and bigger and bigger as we spooned chicken nugget puree in. We say (this is not part of his protocol) 'Ethan show us your bite' and we open our mouths to say 'Ahhhhh'. Ethan just shakes his head no. Dang, all of the sudden massive amounts of pureed chicken nugget come tumbling out of his mouth like molten lava. Protocol requires that we scrape up the spat food and re-introduce it. This little 'pack', 'spit' and 're-introduce' cycle continues until the meal 'times out' - that is until we hit the 50 minute mark. This is not fun....very messy and not fun! We know what to do if Ethan won't open his mouth for a bite, but we don't know what to do when he won't swallow! Oh, well, I guess we'll learn this week!

The non-feeding part of the weekend went great, but we missed Emma & Evan. A hot air balloon landed in the front of the house last night. It was sooooooooo cooool! I took pictures so I'll try to load them later!

Have a great night!
Molly, Mark & Ethan

I've been slacking...sorry!

Ethan has come a long way and we still have 2+ weeks left in the program.  He's eating several new pureed foods, I've been feeding him for over a week and now Mark has started his feeding training and fed Ethan all 4 meals on Friday.  We're on feeding protocol all the time now so we took our 'show on the road' this weekend.  We've come to visit Mark's sister, Molly, and her family, for the weekend.  Emma and Evan opted to stay in Altoona, again, so we'll meet up with them next weekend.  I guess we just can't compete with the Y's day camp!

Mark is feeding Ethan a late dinner as I write this.  Ethan is really 'testing' Mark with the feeding.  He is holding food in his mouth and just when Mark thinks he's done, he spits out a huge gob of spinach souffle or of chicken nugget.   OMG.  I'll have to write more later.  Mark needs help.

Have a great weekend!

Molly, Mark & Ethan 

Christmas at Ronald McDonald House

Emma and Evan are convinced that it is Christmas everyday at RMH and I can understand why.

Mark and the kids arrived about noon on Saturday. The first thing out of Emma's mouth was 'did you get the mail today?'. She knows people send care packages and she thinks that is the coooolest thing on the planet (as a matter of fact, so do I-thank you!). Shortly after their bags were deposited in the room, we walked (ran) down to the mailbox.

Ca ching! The motherlode had arrived! In fact, the motherlode wouldn't even fit into our mailbox, so we had a note to 'visit the office for our PACKAGE'! Yee haw! Emma and Evan were in the office before my mind had even registered the words on the note. Not only were there TWO care packages, there was a card, AND the office manager gave Emma and Evan Build-a-Bears! Wow! The kids were in postal heaven!

Aunt Maria sent a package of fun stuff for Ethan, including a cool twisty straw cup shaped like an ice cream cone and some lavender soap and bubble bath for me, among other things. Thank you Aunt Maria!

The other package was from the Feldstein family, generous souls they are! I can't even begin to describe how absolutely adorable Ethan looks wrapped up in the Thomas towel after a bath! The kids at the Woodfield pool will be oh so jealous when we get back! Thanks so much for thinking of us. Emma and Evan were blown away by the 'vintage' candy. I told them these were the types of things we bought at the pool when I was young. They'll be asking Mr. Murry for a Woodfield pool snack shack when we get home!

Grandma Jean sent a card, she sends one about every week. They are so cute because they all have a clever saying about food. This one said 'Rocky Road can be an obstacle or an ice cream...I'm willing to help you make either one disappear.' So clever!

Feeding over the weekend went well, OK, it mostly went well. I successfully used the protocol for breakfast and lunch on Saturday before the kids arrived. Snack was another matter. We took Ethan away from his sibs for the snack feeding and he was not happy about it. He threw his drink and food at least 3 times during the meal. What a fiasco. There was macaroni & cheese puree, sweet potato puree, yogurt, and strawberry milk everywhere! Not to mention the fact that housekeeping had just mopped a corner of the dining room so we would have a clean spot to work on protocol. Thank goodness the housekeeping staff is used to feeding program kids and their messes. Mark and I were a little stressed!

Giant, a local grocery chain, provided dinner at RMH on Saturday night. It was a big party and I've never seen so much food in one place at one time. Giant also brought HUGE gift bags for each kid. Needless to say, that reinforced the whole Christmas thing so Emma and Evan can't wait to come visit Ethan at RMH again!

Later Saturday, the dinner feeding went well as did Sunday breakfast and lunch. We were even able to do snack protocol at Port Discovery, a children's museum. That was big! Ethan slept through Sunday night dinner, so we missed that meal. All in all, it was a wonderful Father's Day weekend!

Today was a great day in the program. Shhhh...Ethan doesn't know it, but he actually took his medication in applesauce! Hooray! Because he's been doing so well eating, we decided to cancel the G-tube surgery. If we find that Ethan still needs a G-tube, we can always schedule it for a later date. Whew, that is a big worry off our minds!

As if the weekend packages weren't enough, we had a package today from Aunt Leslie & Uncle Tim. Books! I'm able to write this blog early, because Ethan is sitting on the bed reading! Bonus! Thanks for the peace & quiet Tim & Les!

Five weeks down and three to go. We'll be home before we know it!
Have a wonderful evening!
Molly & Ethan

Good Friday

Hi Folks,

Ethan wrapped up an incredible week today. We transitioned from the feeding team to me! I am now employing the protocol in the feeding room while the feeder/recorder view from the observation room. The protocol is a series of standard actions within a certain timeframe that I must follow based on Ethan's response to the food presented. I started feeding Ethan at the dinner feeding yesterday (Thursday) and I fed him at each meal today. Ethan was fantastic.

He has turned a corner this week!

One of our goals is to get Ethan to accept Barium (a substance that is added to his food and will appear in an xray) so a swallow study can be done to scientifically tell whether Ethan is protecting his airway when he drinks. The swallow study is becoming more important because his rate of coughing has increased somewhat with the thinner milk drink. We are trying to get him to accept Barium so a swallow study can be done next Tuesday. So far so good. Ethan was able to take a small amount of Barium in milk at 3 feedings today.

Because Ethan is doing so well with eating this week, Mark and I are hoping that he may be able to do without a G tube. It would be a long shot at this point, but please keep your fingers crossed. Ethan would have to show that he can take his Prevacid (antacid) orally before the surgery next Thursday. No luck so far, but we'll try harder next week. He fights the solutab from getting into his mouth, and he spits it out furiously if we dilute it and try to get it into his mouth.

Mark, Emma & Evan are coming to Baltimore tomorrow and will stay until Sunday night! We are looking forward to the visit! It will be a busy weekend, because this is the first time I have to employ the feeding protocol at the Ronald McDonald House over the weekend...and by myself! I sure hope Ethan cooperates in this new setting! Mark will get to do the protocol after he is trained. He is scheduled to stay in Baltimore the last two weeks of the program so he can be trained.

Behaviors are so-so this week. The major event in the past two days is that Ethan chose to go on an elevator ride at RMH by himself yesterday. He chose the right floor and was in the hall outside our room when I found him. (Bad job choosing to go solo, but good job getting to the right place!)

Have a great weekend!
Molly & Ethan

Greetings from Johns Hopkinsville

Hi,

Ethan had another great day in the feeding program. He ate pureed sweet potatoes. He now has a vegetable! He was not excited about this new food when it was presented at lunch, but he was a trooper and he ate it all. He was also great at snack time, but we missed the dinner feeding. If you're wondering why Ethan is suddenly taking new foods, I'm convinced it has more to do with the strict feeding protocol here than it does with his food preferences. And that is a wonderful thing!

We missed dinner because we had our first foray into the medical process at Johns Hopkins. Ethan had an appointment with ENT to do an in office scope of his airway. Wow! Cincinnati has great hospitals, but I see what makes JHH #1. I wasn't sure whether we were checking in for the appointment or checking in for a flight. This place is huge!

As far as I know, there was no problem found in the scope today, but the doctor did say she wanted to be involved in his surgery next Thursday. She wants to peek at the airway while Ethan is under anethesia. She said she might intubate Ethan for the surgery too. I know patients with airway issues cause extra stress for the anethesiologist so this is probably an extra safeguard.

I'm getting mentally geared up for Ethan's cardio appointment on July 2. He is seeing the director of pediatric cardio surgery at Johns Hopkins. I originally thought, 'wow, he's seeing the director of pediatric cardio surgery at JHH, this guy must be good'. Two people have mentioned to me how lucky Ethan is to see this doctor. His OT referred to him as the number one cardio doctor in the entire world. Wow, impressive. So, I googled him. He has a Wikipedia entry. (Lots of reports and stories too, but I was most impressed by the Wikipedia entry. I'm easily impressed! LOL).

More fun tomorrow! Have a great day!
Molly & Ethan

Genes - Gotta love 'em

Hi,

Sometimes I look at Ethan and think, where the heck did this kid come from? Yeah, he looks like Mark, and he definetly has a Wood attitude, but seriously, this is one heck of a genetic combination. Check out this 'tude:

Ethan calls me Daddy. Daddy! What an insult. I always say, 'My name is Mommy. Say Mommy. ' He just laughs and calls me Daddy again.

Almost every night, for years now, I say 'I love you' to Ethan before I put him to bed. I sign 'I love you' and I sign/say 'I', 'L' love, 'Y' you! He never says or signs it back...never. This goes on and on and on. One day we were walking home from school and he did the 'I love you' sign. I was sooooo excited. I nearly shouted! Ethan, I love you too! Great signing! And I signed 'I love you' right back. He looked at me like I was a complete lunatic and pointed to the sky and repeated his sign. Sure enough, I looked up and there was a dang plane in the sky. The sign for airplane, looks like 'I love you' except that you move your hand through the air. I looked back at Ethan and I'd swear he was smirking.

One day this spring, I picked Ethan up from preschool and his teacher signed 'I love you' to Ethan. He signed it right back to HER without skipping a beat. Man, I could not believe it. So totally unfair!

Last week I was telling that story to one of the moms and her sister. They are from Syria, absolutely beautiful inside and out, and they are as wonderful as can be to Ethan. They thought that story was hilarious. On the way out, the aunt turned and signed 'I love you' to Ethan. He signed it right back to HER, also without skipping a beat. He still has not signed 'I love you' to me! Six years and still no 'I love you'! What is with THAT attitude?


Ethan had a fantastic day today in the feeding program. He ate macaroni and cheese. Not your mother's mac n cheese, it was pureed so fine that it looked like cheese sauce. It was introduced at the lunch feeding, he gagged on the first few bites then took the rest of the serving (1 oz.). He did even better at the snack feeding and ate 2 ounces of mac & cheese at the dinner feeding. It was fantastic! He officially ate a food that was not vanilla or strawberry...Hurray!

More fun tomorrow. They plan to serve sweet potatoes. A vegetable! I can't wait! I think we're on a roll.
Molly & Ethan

Mark's visit

Hi Everyone,

Ethan and I had a wonderful visit with Mark a.k.a. Daddy. He arrived yesterday around noon. We gave him a tour of Ronald McDonald House, showed him where the hospital is, and then spent a relaxing afternoon at Baltimore's Inner Harbor. We ate at the Hard Rock Cafe and just strolled along the waterfront, it was very nice.

Today was a great day in the feeding program. Ethan took two new yogurts, LaCreme strawberry, LaCreme vanilla, and also drank milk with a packet of Strawberry Carnation Instant Breakfast. Wow, it took him a while to warm up to the new drink, but he drank a whole cup by the dinner feeding! Yeah! Progress!

He also did something that I cannot believe: In OT, that's Occupational Therapy, he actually licked a real, fresh strawberry...repeatedly! Mark and I saw it with our own eyes! It was great, he wouldn't take a bite, but I think he liked the flavor. Wow! Now that we've expanded the strawberry and vanilla repetoire, Mark and I are looking forward to progress towards a different taste.

When we got back to the RMH, we had a package from the Davis family! (Yes, I cried, Mark was here to witness the insanity!! I do NOT know what is up with THAT! LOL) The Davis boys picked out their Thomas books and sent them to Ethan. Ethan promptly lounged on the bed with his new treasure trove! He even took one of the books out to play on the playground! Thanks for the goodies for me too!! Wow, we have some totally cool friends! We are very blessed! Thanks for being in our lives!

Mark stayed until dinner time tonight. We had a picnic in the backyard and then he took off for Philly. Emma and Evan have been staying in Altoona, PA with Mark's parents, Obie and Luray. They were supposed to drive to Philly with Mark this weekend, but they decided they wanted to stay in Altoona one more week. They love the YMCA day camp there. Evan was named the camper of the week last week! Go Evan! Emma bought a new 'grown up' black dress, some pretty metallic sandals, and enjoyed the ballet with Luray. Wow, she is growing up soooo fast!

The plan is to have Mark return to Altoona to get Emma and Evan next weekend and come to Baltimore where we will spend a day touring a kids' museum in D.C. I can't wait, I've missed those two!

Hey Ms. Marsha, our Cincinnati feeding therapist, if you are reading this, you'll enjoy Ethan's new words. He picked up 'Good Job' and 'Yuck' at KKI and he clearly said 'Water' for me this weekend. His language seems to be on the upswing! Yeah for that too!

Take care everyone!
Molly & Ethan

We had a great Saturday, hope you did too!

Hi Everybody!

Ethan and I had a great Saturday! First we went to the Baltimore Zoo. It was very warm and sunny, and we haven't been out in the sun much lately, so we bought baseball caps at the gift shop as soon as we came through the gate. Ethan's cap lasted...hmmm...maybe 5 minutes before it was launched into the new groundhog exhibit. It really got the groundhogs moving, though!
Fotunately, a zoo keeper came right over and retrieved it for us! Thanks zookeeper!

We spent about 3 hours walking around the zoo and checking out the animals. The polar bear was especially cool, no pun intended, because he was diving for fish in his pool. It was so neat to watch the huge bear swimming under water looking for his fish dinner!

We also went to White Marsh, a nice outdoor shopping mall, about 20 minutes outside the city. We saw the movie 'Up'. I highly recommend it. It was funny and had way more action that I expected. After the movie, we walked around the outdoor mall for a while and listened to the band warming up. It was a very nice evening.

Right now, we're waiting for Mark to arrive. He should be here within the hour and then we'll go do something fun outside.

Have a great day!
Molly & Ethan

Friday Update

Hi,

Ethan made progress this week. It was great! He is now eating 100% strawberry yogurt, not a mixture, he ate his vanilla yogurt out of a bowl instead of the container, and he will accept a 50% milk/50% strawberry smoothie mix. Hopefully he will keep making good progress next week because they're going to try some new foods.

Mark is arriving in Baltimore on Sunday afternoon and will spend his first day in the program on Monday. He's excited to see how the program works and to visit with us. We will start 'parent feeding training' on Monday too.

We had to make an unexpected accomodation this week, which is why Ethan is being weaned onto the 50% milk/50% strawberry smoothie mix. Ethan has gone from losing weight in the program his first 2 weeks to gaining weight like a fat boy the 2nd two weeks. The yogurt and the smoothie we've been giving him were originally recommended (way back when he was an infant) so he would gain weight, so they're very high in calories. He has 4 feeding sessions per day (9:30, 12:30, 2:30 and 4:30) and he has a yogurt, a smoothie and snacks at each session. This is way, way, way more than he ate at home so he's getting too chunky. Today, I noticed his shorts were getting snug so I looked that the size so I could get him new ones. His shorts were 18 month size! LOL, they fit fine last week! Not many 6 year olds are out there in 18 month shorts, I'm sure! This one won't be for long either!

We're still not sure whether Ethan is safe with thin liquids like milk, so we have an ENT scope on Wednesday afternoon to check his airway for potential aspiration problems (that's breathing food into his lungs). We have the PEG (gtube) scheduled for June 25th, and a cardio consult on July 2nd. These appointments should be able to shed light on whether his feeding issues stem from underlying medical problems.

Have a great weekend!
Molly & Ethan

Fear Factor - Baltimore Edition

Hi Folks,

I heard the best analogy to Ethan's eating today. Mark was explaining Ethan's feeding situation to a coworker when the coworker said 'It would be like you or me going on Fear Factor and having to eat goat eyeballs'. How astute.

That must be exactly what it is like for Ethan.

Today Ethan's mixture of strawberry yogurt & vanilla yogurt went to a 75/25% ratio by dinner time. He tolerated it with more fighting than breakfast, lunch or snacktime, but he tolerated it. Progress is progress so we're happy.

The major change, in my opinion, is that he took the mixture from a strawberry yogurt container. This may seem like a small thing, but he 'reads' labels and looks for the vanilla symbol on the front. He saw the big old strawberry picture and ate the yogurt anyway. Yippee!

Ethan spends all day long eating or getting his mouth ready to eat so it should be no surprise to me that he ABSOLUTELY DOES NOT WANT to sit in the Ronald McDonald House dining room while I eat. His behavior was so bad last night that I had to take my plate outside to eat. It worked out fairly well, I just have to work out the kinks in filling my plate in the dining room, going downstairs, through the playroom and out the door into the courtyard with a food plate in one hand and a wiggly, antsy boy in the other hand.

Have a great night!
Molly & Ethan

I really should stop whining!

Hi,

After my whinefest about no progress yesterday, Ethan actually made progress today! HooHa! We will take any forward progress we can get.

I should also acknowledge the following small steps as progress:

He actually did take a few sips, albeit unwillingly, of the strawberry banana smoothie yesterday, so I really should count that as progress.

He is also able to have more than one food item in front of him at a time here. Back at home he would launch an offending food into orbit if we dared place more than one food item in front of him at a time. At each feeding session, he has a smoothie, a yogurt, 5 goldfish and 5 pretzels in front of him at one time.

Today at lunch, the feeders presented his yogurt cup as usual, but they had stirred a spoonful of strawberry yogurt into his container of beloved vanilla yogurt. Ethan took a look inside the container, 'read' the label, took another puzzled look into the container and 'read' the label again. Needless to say, he started with the other foods.

By the end of lunch, he had fought the new yogurt mixture, spit several times, but was able to eat the entire container when the feeders 'force' fed him using the finger in the mouth maneuver.

At snack time he took the new yogurt mixture more easily and allowed the feeder to 'hand over hand' feed him, meaning his hand and the feeders were on the spoon.

At dinner time he took several bites on his own before he back-tracked a bit and started to fight the new yogurt mixture. He eventually took most of the container in a combination of self feeding, hand over hand, and force feeding.

This may seem like a small thing, but it really was big in the realm of Ethan's feeding issues. The plan is to move to a 50-50 ratio of strawberry to vanilla yogurt then go all strawberry and then try something non-yogurt, perhaps sweet potatoes.

New drinks are on hold for now because sips through a straw are too hard to verify and measure and Ethan is not yet able to drink out of an open cup. Ethan will work hard on the open cup drinking in therapy so we still have a goal of getting him to accept whole milk with Carnation Instant Breakfast added as a thickening agent.

Behaviors ran amok today...again. Many time outs in the playroom for kicking. At dinner, in the crowded RMH dining room, Ethan launched his pretzel bag into orbit where it came to rest on someone's lap. He also launched a shoe into orbit (thankfully it didn't hit anyone) and he launched a sock into orbit which actually landed right in someone's dinner plate. Lovely.

I'd strip him naked before entering the dining room if I thought he wouldn't tinkle on someone!

Wish us luck!
Molly & Ethan

Monday....Monday

Hi,

E* and his Mom had their last day today and I am very sad. E* is Ethan's buddy at the feeding program and here at the Ronald McDonald House. They're both 6, same coloring, same approximate size. E* and his mom are a ray of sunshine. They are so friendly and welcoming. They made our transition into both the feeding program and the Ronald McDonald House easier. They even showed me how to hook up E*'s feeding tube, so we would be prepared when Ethan gets his. We are going to miss them very, very much. E* made great progress in the feeding program and they've been our bit of hope. They leave tomorrow, along with another RMH family.

We've had a lot of turnover at RMH lately, which is sad. So I'm sad about that too.

It's funny, because I thought the RMH was going to be way different than it actually is. It is a clean, friendly respite here, and I'm glad to be here, but it is very emotional. I didn't really expect that, maybe I just didn't think about it. Every family member here has a story and they are often not pretty. The kids have challenges like cancer, heart disease, birth defects, spina bifida, lots of orthopaedic (limb) surgeries, bowel reconstructions, cochlear implants, head injuries from car accidents, you name it. These kids have challenges that are unbelievable. When we first got here I saw the wheelchair, or the leg braces or the bandages, before I saw the KID. Wow....that was dumb of me. These tough little kids have some of the biggest personalities I have ever met. One little girl especially, wow, wow, wow. She has physical challenges that make me want to cry...for her. She came outside to play on the playground with Ethan. I asked her several times if she needed help (because I didn't think she could do what she was attempting to do) and all she said was 'No, I can do it.' And she could. And she did. And she will keep on doin' it. I know it sounds cliche, but this place is really changing me....for the better. These kids are inspirational. It's hard to see more and more families streaming into RMH, with their difficult struggles, but it's a good thing too. After all, the struggle may be 'difficult', but after you've lived with it a while, it just becomes life. And life goes on. And you just live it.

I'm also sad because we're in our fourth week and Ethan hasn't made much progress. Which may seem trite because feeding issues seem like they should be way down on the priority list compared to what some of the other kids are facing, but it is a big deal to us. Mark and I went from thinking we'd take Ethan out to eat and he'd eat from the menu, to thinking that he'd eat, but we'd just have to puree all of the foods, to thinking that maybe we'll get him to drink one other drink besides his smoothies. I really, really, really want to see some major progress and soon! Wah!

Today the feeders swapped out his smoothie (strawberry) for the same brand, but different flavor (strawberry/banana). This is a very, very, very small change. All other foods presented were his preferred foods. He ate the other items, just fine, but went on a spitting spree and then a standoff on the strawberry/banana smoothie. Man, is Ethan a tough nut to crack. Three meals with the new smoothie flavor today and only a few sips were actually swallowed.

The feeder turned off the Thomas Videos (his reward) when he wouldn't drink the new smoothie. He had to take a sip to have it turned back on. He would 'pretend' to sip, he would blow into the straw instead of sipping, he would take a sip then wait until the feeder turned to push the play button on the VCR and then he would let the smoothie dribble out of his mouth and down into his shirt. He would swat the smoothie cup off of his tray and finally he would just fidget until time ran out. A couple of times he even had the audacity to spit directly into the feeder's face. That's my boy....arrrrrghhh!

It all goes back to that control thing. When Ethan loses some control, his bad behaviors increase, usually with things he can control. For instance, when I said 'fidget' above, I actually meant that Ethan strips off all the things he can while strapped in his feeding chair. Off go the shoes, maybe the socks, maybe the glasses, and today, almost the wet, dribbled on shirt. Not only does he strip them off, but he throws them too, if he's given even a millisecond of opportunity.

Unfortunately, the bad behaviors continued after the feeding sessions. Why is it that some of the most uncomfortable issues have to deal with us in the bathroom?!? Ethan still wears diapers. He is showing some signs of being ready for potty training, but we've been advised to wait until well after the feeding program. We don't want to overwhelm the poor kid, you know.

Well, we're in the handicapped stall of the ladies room so I can change his diaper. Wet diaper off, I fold it up, turn to throw it away (all of 3 seconds), turn back and Mr. Control is tinkling ALL OVER THE FLOOR....with a huge grin on his face, no less. At least he tempered it with a contrite 'UhOh!'. Crap, now I have to rediaper Ethan AND clean up the floor, all while holding on to his arm so he won't run away. That was fun. And that was sarcasm.

Our room at RMH looks like a hotel room, but it does not have a chain or slide lock on the door. Ethan can walk out (or run out, in his case) any time he pleases. This weekend he chose to do so while I was 'otherwise occupied'. E*'s mom caught him. The first week here he did it while I was in the shower. Oh, it was sooooo much fun to run down the hall, dripping wet, dressed in only a towel, to catch him as he hit the 'down' button on the elevator. RMH staff told me the rule about wearing shoes at RMH. They didn't actually say there was a clothes wearing rule, so I think I'm good.

He also got away at Port Discovery. That one was scary. I lost him in a big Memorial Day crowd and had to enlist the security guards. They found him on the second floor. Within minutes of me losing him on the first floor. He is one quick kid.

You might ask, why I don't keep him on a leash. I tried that. Ethan holds himself at a 45 degree angle when he is strapped into the 'monkey leash'. He hates it. If the 45 degree angle stance doesn't work, he just drops down on the floor and refuses to move. Also not fun.


Please, please, please dear readers, please tell me that you have experiences like this so I know I'm not alone!

More fun tomorrow!
Molly & Ethan

OK, I'll try this again...no luck last night

Phillips Seafood catered dinner last Friday night.


Hi Everyone,





I tried to update the blog last night, but had no luck. The connection here is not the best. Thanks for the cookies Denise! We shared them with all the familes at dinner last night. Delicious! We all enjoyed a little love and happiness! How creative! Thank you! (Yeah, I cried AGAIN! LOL)





Ethan's world is going to change next week. Now that he understands the reward process for eating (Thomas videos), the feeders are going to start experimenting with punishment. If Ethan spits out his food, which he did approximately 8 million times the first week here, he will be punished. When we're sure he understands the punishment process, new food introduction will be stepped up. The first food goal is to get him to accept a new drink.





Folks here are a little leery about trying to push too hard on the food because noone is sure that it is comfortable for Ethan to eat. If we push too much food and it hurts, it will only reinforce the fact that he should avoid eating new foods.





We're going to go have some fun today. We're going to go to the National Aquarium. I hope everyone out there has fun today too!





Miss you!


Molly & Ethan

Sorry I missed yesterday...

Hi Folks,

First of all, I have to say thank you to my mom and the Feldsteins. Why is it that I can hold it together most of the time, yet cry like a baby when I get a card or package from home? Thank you! It was exactly what we needed. We broke out the toys in the playroom and had a great time tossing the lightup suction cup ball. It didn't matter that the kids were all from different countries, their smiles said all I needed to know! Thank you! Attention baseball scouts...the little kid from Turkey throws like a major leaguer, I know, I almost lost my head...several times!

We're finishing up our third week here...can't believe it...and Ethan has still not taken one bite of a new food...kinda can believe that. (Insert sad frownie face here.) Our cardio appointment is July 2nd and Ethan's G-tube and scopes are scheduled for June 25th. Our official discharge date is July 13th, but I'm already starting to smell an extension. Please pray for an eating break through.

Speaking of eating, I figure you might be interested in what it is that Ethan actually does eat. He gets the vast majority of his calories from Yoplait Strawberry Smoothies and Yoplait Vanilla Custard Style Yogurt. He also noshes on some crunchy, yet quick to dissolve, foods like pretzels, Goldfish crackers, Ritz crackers and Reece Puff cereal. The crunchy stuff comes and goes like the weather. He's known to eat Jello Fat Free Pudding cups and vanilla ice cream with strong pursuasion. He used to eat spaghetti until the whole nasal regurgitation thing, but that is a story for another day. His fruit menu consists of banana and an occasional applesauce. There are no meats or vegetables in Cafe Ethan. He sips some water from a fountain and sometimes sips thick chocolate milk. I say sips because he rarely has these and rarely more than a 1/4 cup when he does.

The problem with this diet, aside from the whole misinterpretation of the four food groups as Dairy, Sugar, Salt and Flour, is that he accepts NO SUBSTITUTIONS. His food has to be the SAME BRAND, SAME FLAVOR. He even checks the labels.

He drinks 4-6 smoothies per day. The thing about smoothies is that they are trendy. In Cincinnati, trendy means that all the major grocery chains have discontinued to stock them. Biggs was the last grocery chain to carry the smoothies. A special thank you shout out to Dave, Phil and Jeff in frozen foods at the Mason-Montgomery Biggs store for special ordering the smoothies for months. Thanks guys! But alas, Biggs also chose to discontinue the smoothies. The last known (to me) store to carry Ethan's smoothies is Target. Tim in Market (Fields-Ertel store) special ordered the smoothies for Ethan until we came to Baltimore. Thanks to you too, Tim! If we cannot get the smoothies, Ethan will not drink PERIOD. He has been known to go 3.5 days without drinking anything because the distributor has been out of smoothies.

Baltimore appears to be on the same trend line as Cincinnati. I found one Target that carries his smoothies. It's about half an hour away from the Ronald McDonald House. (Cincinnatians, think of us...say...in Over the Rhine, and the Target...say...in Mason.) I didn't get to update the blog last night because we were out looking for smoothies. We found 12. Hoo Haa!

We were about a mile from our home away from home when the big old storm hit. We got drenched. I thought it best not to update the blog in an electrical storm! So here we are.

Ethan is already sleeping. The program is very intense....have I mentioned that before?!?!...and it wipes him (us) out.

We miss you all! Please give a nod to the big guy upstairs for all the kids here...and their families. Love you!

Molly & Ethan

Tuesday - henceforth to be known as Behavior Day

Hi Everyone,

Greetings from the land of Food.....as in EVERYTHING revolves around food. I'll gain 800 pounds by the time we're home and Ethan will lose 10 pounds. Men and their lightning fast metabolism....totally unfair.

I spent a lot of time today thinking about behavior. I'd always thought of behavior in terms of 'Bad Behavior' as in one of my kids needing a time out, loss of privledges, or a spanking. (Yeah, I said 'spank'. Gasp!) This program has me thinking of behavior like a teeter totter. Ethan's teeter totter has good behavior on one end and bad behavior on the other. Ethan's balancing point is control.

When Ethan loses some control in his world, the bad behavior side goes UP and the good behavior side goes DOWN. When he gains control the good behavior side goes UP and the bad behavior side goes DOWN. He's had control for the past several days.

Ethan started to lose some control in the feeding room today. He now has to actually take bites or sips to watch the beloved Thomas the Tank Engine videos. Oh, and we now have 4 feeding therapy appointments per day, up from 3.

First we had a meltdown in the playroom after breakfast. Someone touched the most favored 'wooden beads on twisty, convoluted yet brightly colored wires toy' (for lack of a better term), which started a red faced, fist clenched, Grrrrr-a-thon. Wow, what happened to my sweet, smiling, quiet, non-verbal, limp, shut-down little boy?

The fact that we had some sort of appointment every hour on the half hour today didn't help.

When the elevator doors opened on the speech therapy floor a little later, Ethan actually melted down before we even stepped out. He started screaming "NO! NO! NO!" while signing 'all done' and crying....real tears...not those fake, whiny alligator tears that come with the hands-covering-the-eyes meladrama. This was true real-life drama. You see, the speech therapist sticks all sorts of lumpy, bumpy, chewy, sprayed with flavor, THINGS into Ethan's never willing mouth. And he's on to her.

Occupational therapy was probably not much better. I believe the word the OT used to describe today's session was 'defensive'. It sounds so much better than 'completely and totally uncooperative', but our sweet OT would never say something like that! She did, however, say she knew better than to push with foods today. Good call.

Ethan did have a nice, positive breakthrough in the playroom today with another mom from the program. She had him so excited about playing blocks that he said, actual, real words, lots of them, and no, none of them were four lettered! He even counted to four, unprompted! It was good, no, it was great to see. Especially after his, at least, THREE playroom timeouts for throwing toys and hitting.

Tomorrow's a new day!

See you all soon!
Molly & Ethan

Great Weekend then back to reality

Ethan and I drove up to Altoona, PA to meet up with Mark, Emma and Evan at Obie & Ray's house. What a beautiful weekend! Sunny and 75, need I say more? We hung around Obie & Ray's house on Saturday and went to an old fashioned amusement park on Sunday where we rode a wooden rollercoaster built in 1902. We had a great time.



The one odd thing about the weekend was Ethan's feeding. Ethan walked into Obie & Ray's house, sat right down at the table and ATE ALL WEEKEND LONG. He didn't eat any new foods, but he scarfed down more of his 'safe' foods than we had ever seen. I think he was making up for his lack of eating the past two weeks at the program.



It was back to reality today. The doctors at the feeding program took all the pressure off Ethan since Friday. He was able to eat his 'safe' foods, have me in the feeding room with him, and watch Thomas videos (his reward) while he ate. Today we phased me out of the room and phased the feeder and recorder back into the room. Since he seems to be relaxing, we will soon start putting some pressure back on for the rewards and start on some new foods.



He is still not drinking much. We had to cancel Wednesday's cardio consult, because his KKI doctor wants him to see the director of pediatric cardio surgery at Johns Hopkins instead of the doctor we had scheduled. We are also waiting for the scheduling of the Gtube, or PEG, as they call it. I think the GI doc here wants to do a scope and look at his eppiglotis and vocal chords at the same time. (Please excuse my spelling, I seem to spell eppiglottis differently every time!)

That's all for now! We miss you all!
Molly & Ethan

Pics & Thanks!

Ethan at Baltimore's Port Discovery on May 23, 2009


Ethan playing at Ronald McDonald House 5/23/09



Ethan and I are driving to Altoona, PA tomorrow to meet up with Mark, Emma, Evan and to visit Obie & Ray (Mark's parents). It will be nice to see them!

I need a mental break from the medical and feeding stuff, so I'd like to share a few things for which I am thankful:

My wonderful family.

Friends like Denise FitzGerald who are always there to step in to help. Thank you my little angel.

Mark, for making me take his car, getting new tires, and doing all the background work for this trip.

The in-dash GPS system in Mark's car for making my trip less stressful and for saying in that soft, comforting female voice 'Take the next U turn, if possible.' instead of saying'Turn around, you lugnut, I just gave you two warnings for that left turn you just missed!'

The HR Benefit folks at Convergys for taking the initiative to push to get Ethan into this program. We wouldn't be here without you.

The valet staff at Kennedy Krieger for knowing I'd need a little TLC at the end of the day last Thursday. The valet had my car ready when we came out (without us even asking!), he rolled the windows down so the car would be cool, and he whisked Ethan and me right in when we came out from a most stressful day.

The volunteers who come to the Ronald McDonald house every night to make us dinner. I had no idea how much that would mean. It means the world and brings tears to my eyes every night.

The other kids here at the Ronald McDonald house for loving on Ethan so much. They have health issues beyond anything I could bear and they truly care about how Ethan is doing and happily greet him when we get back to the house at night. We've met families from Kuwait, Turkey, Wisconsin, New Hampshire, South Carolina, Texas and New York. It's truly a small world.

The High School group who came to visit the kids at Kennedy Krieger yesterday. They spent the school year selling bracelets to raise money to buy toys for our kids. Ethan loves his Madagascar 2 DVD! Funny, I always thought of myself as a 'giver'. It is humbling and touching to be on the receiving end.

My departed loved ones who send us pennies from heaven every time Ethan is in the hospital. I know you are thinking of us, wherever you are!

Have a wonderful weekend!
Molly & Ethan

Picture of a feeding and 'food for thought'

Here's Ethan in a feeding session.

We had our feeding team meeting this morning. It was interesting and gave Mark and I a LOT to think about. We received a status from each area, which was nice, even though we get regular updates from the staff throughout the day.

We suspected Ethan would be a 'tough case' because of how much effort we have put into feeding him the past 6 years. Besides, if we came all this way, and he was a push over, we would totally look like loser parents! Well, it's one thing to suspect he is a 'tough case' and another thing to be told it by those who know. I got all teary eyed in the meeting....it's a mom thing.

The director of the feeding program is now Ethan's case manager. Ethan appears to have 'shut down' (that's psycho lingo for his eerie calmness during feedings). Based on the experience of the folks in the program, kids who are purely stubborn have good days and bad days, not a constant hours long refusal like Ethan has shown. Experience has also shown that kids who are adamant about refusal are likely doing so to protect themselves due to an underlying medical issue.

We know Ethan has several medical issues that could potentially cause his feeding issues, we just don't know which one is the major factor or if his refusal is a result of a combination of all of them. So we need to check off each issue by addressing the factors we can control. Because his time here in the program has also led him to refuse food and drink in the 'off hours' he is getting dehydrated and losing weight. An NG tube was discussed (a feeding tube that goes down the nose to the stomach) but was rejected because of Ethan's small airway. He has enough room to breath now, thanks to the airway reconstruction, but an NG tube would block a portion of the airway-not a good thing.

The other option is to surgically install a G tube, a feeding tube port in his belly which would deliver food and medication directly into his stomach. It's not 100% final, but very likely that Ethan will get a G tube within the next few weeks. This would also require Ethan to stay at the hospital 24 hours per day for a while. Lots of kids in the program have G tubes, so it is not a huge deal, it's just something we hoped to avoid by going through the program. And something we have to work out with insurance, since we are on such a tight insurance leash right now. Hopefully our insurance would not make Ethan go back to Cincinnati for this relatively minor procedure.

The other thing we are lined up for is the cardio evaluation to check on his 'rogue' artery. Officially it is called an aberrent right subclavian artery, but I prefer to use the more casual moniker...rogue. This artery is attached in the wrong place on his heart and is beating into his esophagus, creating a little ledge in his food shoot with every heartbeat. Sounds like a 'rogue artery' to me. A Johns Hopkins cardio doc will check this out on June 3rd specifically to answer the question of whether this is keeping him from feeding comfortably. CCHMC cardio docs took a peek at it last year, but not necessarily with the feeding impact in mind.

Another concern is whether Ethan is refusing to feed to protect his airway. There is a chance, which an updated, more thorough, swallow study would confirm or deny, that his floppy eppiglotis, combined with the lazered hole in his vocal cords, could allow food to compromise his airway. (Wow, that was quite a sentence!) The thought is that he doesn't eat because he doesn't want to accidentally breathe food into his lungs. Unfortunately, Ethan needs to be able to actually take in food with barium to do a swallow study. So that theory is on hold for now. I personally think this is the least likely scenario.

So, we have backed off the stringent feeding protocol in an effort to reduce Ethan's stress about eating, and are waiting for the decision/scheduling/insurance approvals needed to take the next step.

We miss you all...over and out!

Molly & Ethan

I'll come right out and say it. Being the sole caretaker 24/7 for Ethan has been much harder than I imagined it would be. Those of you who were around when Evan was little and was a 'runner' will understand. Mark and I have been blessed with boys who LOVE to run away...ALL the time. Evan grew out of it by the time he was 5, but Ethan seems to cling to the whole love of running away thing. Here are a few examples:

Gotta love automatic doors...NOT!

Kennedy Krieger and Ronald McDonald House, like most places nowadays, are sprinkled with these little convenient 'handicapped accessible' door opening buttons. Ethan LOVES these because they make running away so much more fun than if he actually had to open a door. Last Friday night Ethan hit the one at the front door of RMH just as a wheelchair was coming through. Ethan squeezed between the wheelchair and the door, I did not, so by the time I caught him he was halfway down the block running with a huge grin on his face.

Last week at KKI, I was in the handicapped stall of the ladies room, doin' my business, with one hand on runner boy. I let go for a millisecond and runner boy was out the stall door, hit the button, and was running down the hall laughing all the way. I got my pants up, but not zipped or belted and ran down the hall, right into an old guy who was laughing his head off. I was mortified....

..or so I thought...

Today, I used the handy 'Family Friendly' bathroom. It is one open room, no stall, has a dang door button, but also a deadbolt. I thought I was safe....nooooooooo...the dang deadbolt is child accessible. ???? I'm on the throne and Ethan heads for the button....I'm pleading...no, no, no, Ethan please don't try that. It takes him all of 2 seconds to remember the deadbolt. I'm still....yelling now....NO ETHAN...no luck, deadbolt...OPEN...door button...PUSHED. OMG. The door opens WIDE, (no stall, remember) and at the speed of a half dead slug....slowly...oh so slooooowwwly opens WIDE, WIDE, WIDE (I'm still on the throne...Ethan is gone...hallway populated...I'm sure I'm so red, I'm purple.) and then the door closes....slowly...oh so slowly...at the speed of a half dead slug. I wasn't really sure I wanted to catch Ethan by that time.

But he's just getting me back for bringing him to feeding therapy...

I gave you an overview of therapy last week, but I don't think I mentioned how hard it is to watch. I'm in a soundproof viewing booth watching his session through a one-way mirror. His feeding therapist is in the room with 2 to 3 assistants. The therapist feeds, the assistants either enter data on a laptop or help 'block' (hold Ethan's hands when he fights or holds him when he tries to bang his head...it can get rough.)

Three quarters of the way through last Thursday's noon session, Ethan stopped screaming and fighting and went limp. I cried because, well, because I'm his mom and for some reason, it was hard, but easier to see him cry than to see him go limp. I expected him to cry, I did not expect him to go limp. Every feeding since then he has been eerily calm (limp) and he keeps his teeth clenched. When he used to fight, he would immediately spit out any food that got into his mouth, with teeth clenched, the food doesn't even get into his mouth.

Today they tried a classic dentist move where the therapist will stick a finger into his mouth along the side of his teeth until he opens his mouth. It worked at today's lunch feeding because the food (pretzel, a favorite food item) got into his mouth....progress, but he REFUSED to chew or swallow. So he sat for half an hour with the food in his mouth not chewing not swallowing. Did I mention that a pretzel is one of his absolute FAVORITE foods....can you say 'Control'?

By dinner tonight he had 'outsmarted' that technique by developing an ability to go so limp he looked like he was sleeping...with the therapist's finger in his mouth. One hour. No chews no swallows.

So no calories ingested yet this week at therapy, although I am allowed to feed him after hours. He has lost 1 to 1.5 pounds this week and we're having a team meeting tomorrow morning to discuss whether he will need an NG tube because he's very low on fluids. No carido consult or swallow study yet. His NG tube history is poor...I think he has pulled them out each time he's had them in the past.

So, that's the fun. Miss you all, bet you wish you were here...not!
Molly & Ethan

Since I last wrote

Ok, it's been a while since I wrote so I'll give you a long winded update:

Background:

Ethan needed this feeding program.
Ethan's doctors and therapists said Ethan needed this feeding program.
Ethan's insurance company did not want to pay for this feeding program.
Mark's employer told the insurance to pay for this feeding program.
We are now at this feeding program and
We are very glad to be here because it has been 3 years since we learned Ethan needed the program and five months since we thought we were leaving for the program.

Our trip to Baltimore, MD:

Ethan and I left Cincinnati last Saturday morning (5/16/09) and drove all the way through to Baltimore. We had great weather, little traffic and Ethan was good on the drive. We stayed in big puffy, cozy beds at the Columbia, MD Sheraton on Saturday night. Sunday through Tuesday nights were spent at cousin Mary's house in Columbia. Totally cute house! Thank you Mary!

We, quite unexpectedly, got into the Baltimore Ronald McDonald House on Wednesday. We throught it would take weeks, so this was a nice surprise. We are now settled in and our address for the next 8 weeks is

Ronald McDonald House
635 West Lexington Street
Room 206
Baltimore, MD 21201

Three moves in 5 days took their toll, but we're settled now.

The Feeding Program:

Ethan started into the feeding program on Monday, 5/18. The feeding program is an 'inpatient' day treatment program. Ethan is admitted to the Kennedy Krieger Institute, part of the Johns Hopkins Medical Campus, but we only have to be there all day Monday through Friday for 8 weeks.

The program is an ABA (Applied Behavior Analysis) based intensive feeding program. Ethan takes 3 one hour meals per day here and has Speech Therapy, Occupational Therapy, Behavior Therapy, and Playroom 'Therapy' between his meal times. The meal times are actually the most intensive therapy sessions of all.

Ethan eats food, is growing, but is considered to have a severe feeding disorder because he eats a very limited diet (maybe 10 different food items) and is extremely adverse to any new food. Read that as 'Ethan fights, screams, cries, gags, and spits when presented with a new food or sometimes even with a known food item.' Mealtimes at the O'Briens are not much fun.

This program looks at all the reasons why Ethan has trouble eating. As far as we know, his sensory processing disorder (doesn't like to touch several textures, may have trouble with some smells), cognitive delays (He's 6 but thinks like a 2-3 year old), significant medical history (lots of airway surgeries & procedures), oral dysphagia (mouth muscles don't work like they should), esophageal dysphagia (a rouge artery is pushing into his esophagus), and some other issues I can't recall at the moment, are all contributing to his eating issues. The fact that he is mostly non-verbal (he doesn't talk) hinders our knowledge of WHY.

So far in the program we've covered his typical feeding habits, experimented with swapping out some known foods for unknown foods, (I did the feeding) and started into the intensive feeding therapy (trained specialists do the feeding). Ethan has moved from screaming and fighting, crying and gagging for an hour straight at a meal to an eerie calmness where he merely stares the feeding therapist down with clenched teeth for an hour. I believe his caloric intake (they measure EVERYTHING) is something like 15 calories total for the week of intensive feeding therapy. Considering that I can take in 15 calories by merely smelling a food, you get the idea.

The Johns Hopkins cardio docs here are also taking a closer look at the rogue artery that is pushing into this esophagus to find out how much of an impact this is having on his feeding. The Kennedy Krieger therapists will also being performing a new swallow study (it's an xray thing) to find out if his airway is being fully protected when he swallows.

We miss home and everyone there! Take care and I'll write more later. Mark gave me a new camera for Mom's Day so I'll take some pics too.

See you soon!
Molly & Ethan

Little E's Big Adventure - Background

Ethan's life has been one big adventure after another, but it seems as though everything in the past 5 plus years has been in preparation for our latest adventure - an eight week stay at the Kennedy Kreiger Institute's feeding program.

Ethan was born into a loving family. Mom, Dad, Emma and Evan welcomed Ethan, but were not so sure about welcoming the diagnosis of Down syndrome. Ethan had feeding issues from the start, but his breathing issues took precedence. After 3 years of frequent hospitalizations, procedures, and airway surgeries - including three trips to the ICU on a respirator - Ethan's breathing issues were fixed. Now the real work could begin.

We noticed Ethan would no longer eat 'real food' after his airway was fixed. He would mostly drink yogurt smoothies and eat only a few cracker-y foods. New foods were met with gagging, screaming or fighting. A few years of feeding therapy and OT followed with little to no progress. The Cincinnati Children's Hospital Medical Center referred Ethan to the Kennedy Kreiger Institute in Baltimore, MD, a nationally known inpatient feeding program, last spring.

We've spent the past year in multiple evaluations and have found that Ethan has roughly eight reasons why he won't eat. Kennedy Kreiger will address these issues and teach Ethan to eat. We can't wait! Ethan is scheduled to be admitted on February 2, 2009.

We can leave for Baltimore and KKI as soon as we get insurance approval. Wish us luck!