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
Thursday, June 11, 2009
Tuesday, June 9, 2009
I really should stop whining!
Hi,
After my whinefest about no progress yesterday, Ethan actually made progress today! HooHa! We will take any forward progress we can get.
I should also acknowledge the following small steps as progress:
He actually did take a few sips, albeit unwillingly, of the strawberry banana smoothie yesterday, so I really should count that as progress.
He is also able to have more than one food item in front of him at a time here. Back at home he would launch an offending food into orbit if we dared place more than one food item in front of him at a time. At each feeding session, he has a smoothie, a yogurt, 5 goldfish and 5 pretzels in front of him at one time.
Today at lunch, the feeders presented his yogurt cup as usual, but they had stirred a spoonful of strawberry yogurt into his container of beloved vanilla yogurt. Ethan took a look inside the container, 'read' the label, took another puzzled look into the container and 'read' the label again. Needless to say, he started with the other foods.
By the end of lunch, he had fought the new yogurt mixture, spit several times, but was able to eat the entire container when the feeders 'force' fed him using the finger in the mouth maneuver.
At snack time he took the new yogurt mixture more easily and allowed the feeder to 'hand over hand' feed him, meaning his hand and the feeders were on the spoon.
At dinner time he took several bites on his own before he back-tracked a bit and started to fight the new yogurt mixture. He eventually took most of the container in a combination of self feeding, hand over hand, and force feeding.
This may seem like a small thing, but it really was big in the realm of Ethan's feeding issues. The plan is to move to a 50-50 ratio of strawberry to vanilla yogurt then go all strawberry and then try something non-yogurt, perhaps sweet potatoes.
New drinks are on hold for now because sips through a straw are too hard to verify and measure and Ethan is not yet able to drink out of an open cup. Ethan will work hard on the open cup drinking in therapy so we still have a goal of getting him to accept whole milk with Carnation Instant Breakfast added as a thickening agent.
Behaviors ran amok today...again. Many time outs in the playroom for kicking. At dinner, in the crowded RMH dining room, Ethan launched his pretzel bag into orbit where it came to rest on someone's lap. He also launched a shoe into orbit (thankfully it didn't hit anyone) and he launched a sock into orbit which actually landed right in someone's dinner plate. Lovely.
I'd strip him naked before entering the dining room if I thought he wouldn't tinkle on someone!
Wish us luck!
Molly & Ethan
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
Monday....Monday
Hi,
E* and his Mom had their last day today and I am very sad. E* is Ethan's buddy at the feeding program and here at the Ronald McDonald House. They're both 6, same coloring, same approximate size. E* and his mom are a ray of sunshine. They are so friendly and welcoming. They made our transition into both the feeding program and the Ronald McDonald House easier. They even showed me how to hook up E*'s feeding tube, so we would be prepared when Ethan gets his. We are going to miss them very, very much. E* made great progress in the feeding program and they've been our bit of hope. They leave tomorrow, along with another RMH family.
We've had a lot of turnover at RMH lately, which is sad. So I'm sad about that too.
It's funny, because I thought the RMH was going to be way different than it actually is. It is a clean, friendly respite here, and I'm glad to be here, but it is very emotional. I didn't really expect that, maybe I just didn't think about it. Every family member here has a story and they are often not pretty. The kids have challenges like cancer, heart disease, birth defects, spina bifida, lots of orthopaedic (limb) surgeries, bowel reconstructions, cochlear implants, head injuries from car accidents, you name it. These kids have challenges that are unbelievable. When we first got here I saw the wheelchair, or the leg braces or the bandages, before I saw the KID. Wow....that was dumb of me. These tough little kids have some of the biggest personalities I have ever met. One little girl especially, wow, wow, wow. She has physical challenges that make me want to cry...for her. She came outside to play on the playground with Ethan. I asked her several times if she needed help (because I didn't think she could do what she was attempting to do) and all she said was 'No, I can do it.' And she could. And she did. And she will keep on doin' it. I know it sounds cliche, but this place is really changing me....for the better. These kids are inspirational. It's hard to see more and more families streaming into RMH, with their difficult struggles, but it's a good thing too. After all, the struggle may be 'difficult', but after you've lived with it a while, it just becomes life. And life goes on. And you just live it.
I'm also sad because we're in our fourth week and Ethan hasn't made much progress. Which may seem trite because feeding issues seem like they should be way down on the priority list compared to what some of the other kids are facing, but it is a big deal to us. Mark and I went from thinking we'd take Ethan out to eat and he'd eat from the menu, to thinking that he'd eat, but we'd just have to puree all of the foods, to thinking that maybe we'll get him to drink one other drink besides his smoothies. I really, really, really want to see some major progress and soon! Wah!
Today the feeders swapped out his smoothie (strawberry) for the same brand, but different flavor (strawberry/banana). This is a very, very, very small change. All other foods presented were his preferred foods. He ate the other items, just fine, but went on a spitting spree and then a standoff on the strawberry/banana smoothie. Man, is Ethan a tough nut to crack. Three meals with the new smoothie flavor today and only a few sips were actually swallowed.
The feeder turned off the Thomas Videos (his reward) when he wouldn't drink the new smoothie. He had to take a sip to have it turned back on. He would 'pretend' to sip, he would blow into the straw instead of sipping, he would take a sip then wait until the feeder turned to push the play button on the VCR and then he would let the smoothie dribble out of his mouth and down into his shirt. He would swat the smoothie cup off of his tray and finally he would just fidget until time ran out. A couple of times he even had the audacity to spit directly into the feeder's face. That's my boy....arrrrrghhh!
It all goes back to that control thing. When Ethan loses some control, his bad behaviors increase, usually with things he can control. For instance, when I said 'fidget' above, I actually meant that Ethan strips off all the things he can while strapped in his feeding chair. Off go the shoes, maybe the socks, maybe the glasses, and today, almost the wet, dribbled on shirt. Not only does he strip them off, but he throws them too, if he's given even a millisecond of opportunity.
Unfortunately, the bad behaviors continued after the feeding sessions. Why is it that some of the most uncomfortable issues have to deal with us in the bathroom?!? Ethan still wears diapers. He is showing some signs of being ready for potty training, but we've been advised to wait until well after the feeding program. We don't want to overwhelm the poor kid, you know.
Well, we're in the handicapped stall of the ladies room so I can change his diaper. Wet diaper off, I fold it up, turn to throw it away (all of 3 seconds), turn back and Mr. Control is tinkling ALL OVER THE FLOOR....with a huge grin on his face, no less. At least he tempered it with a contrite 'UhOh!'. Crap, now I have to rediaper Ethan AND clean up the floor, all while holding on to his arm so he won't run away. That was fun. And that was sarcasm.
Our room at RMH looks like a hotel room, but it does not have a chain or slide lock on the door. Ethan can walk out (or run out, in his case) any time he pleases. This weekend he chose to do so while I was 'otherwise occupied'. E*'s mom caught him. The first week here he did it while I was in the shower. Oh, it was sooooo much fun to run down the hall, dripping wet, dressed in only a towel, to catch him as he hit the 'down' button on the elevator. RMH staff told me the rule about wearing shoes at RMH. They didn't actually say there was a clothes wearing rule, so I think I'm good.
He also got away at Port Discovery. That one was scary. I lost him in a big Memorial Day crowd and had to enlist the security guards. They found him on the second floor. Within minutes of me losing him on the first floor. He is one quick kid.
You might ask, why I don't keep him on a leash. I tried that. Ethan holds himself at a 45 degree angle when he is strapped into the 'monkey leash'. He hates it. If the 45 degree angle stance doesn't work, he just drops down on the floor and refuses to move. Also not fun.
Please, please, please dear readers, please tell me that you have experiences like this so I know I'm not alone!
More fun tomorrow!
Molly & Ethan
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
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
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
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
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