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
Monday, June 22, 2009
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
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
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
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
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
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
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
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
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
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
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