Tuesday, June 30, 2009

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

Monday, June 29, 2009

Pics of the Hot Air Balloon from Saturday Night

Mark and Ethan watching the balloon land.

The balloon coming in for a landing.

Sunday, June 28, 2009

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

Saturday, June 27, 2009

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 

Monday, June 22, 2009

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

Friday, June 19, 2009

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

Wednesday, June 17, 2009

Greetings from Johns Hopkinsville


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

Tuesday, June 16, 2009

Genes - Gotta love 'em


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

Monday, June 15, 2009

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

Sunday, June 14, 2009

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, June 12, 2009

Friday Update


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

Thursday, June 11, 2009

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

Tuesday, June 9, 2009

I really should stop whining!


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, June 8, 2009



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

Saturday, June 6, 2009

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

Thursday, June 4, 2009

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, June 2, 2009

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

Monday, June 1, 2009

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