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
Tuesday, June 30, 2009
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
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
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
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
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