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!