I've been meaning to update for a few days but haven't seemed to find the time. Regardless, we've hit a big milestone here. It's been 6 months 9 (and five days) since Jack finished the program at Kennedy Krieger! Woot! I can't believe its already been 6 months! Some days it feels like that was a different lifetime and some days it feels like yesterday.
So where are we? We're doing pretty good! Does he still have issues with food? Oh yes. Would he still prefer to spend his days eating yogurt? Yep. BUT he doesn't!
Jack is doing really well. We've seemed to backtrack a bit on self feeding so we're working on that. He self feeds all preferred foods with no issue but seems to need a bit of a push with lesser preferred.
So what are his new preferred foods? Pizza. Hands down. That kid LOVES him so pizza and oddly seems to enjoy the crust the most. Bananas. Holy cow. I feel like we go through more bananas than a zoo. He would eat 5-6 large bananas a day if we and our inventory allowed. Pretty much anything Italian. Ziti, spaghetti, lasagna. He loves it all.
Foods that still cause a problems? Vegetables, but I feel like thats probably a typical three year old thing to that feel that way. Sandwiches. Unless its PB and Nutella (a rare treat), he's not eating it without voicing at least a small amount of unhappiness.
Overall, where are we? I think we've really found our groove with this whole eating thing. Just like basic parenting, some days are better than others. Some days are rough and nearly every bite can be a fight. Other days we have no issues with food.
We've been working on introducing new foods and he's tried quite a variety of new things. Most recently was cheese quesadilla in hopes that one day we can eat at a Mexican restaurant and NOT order him chicken nuggets. Our big challenge to see how far we've come will be next week with Thanksgiving. While NO ONE is expecting him to sit down and eat a traditional Thanksgiving dinner, goals have been set as to which foods we'd like him to have for dinner. We'll see how it goes.
Now that we're six months out, what's next? He's got a follow up in December. I'm very excited to take him back and let everyone see how he's doing (PLUS to see everyone!). After that I think we go back in May for a one year (!) follow up.
In short- life is good. Steve and I (and our friends and family) are all incredibly thankful for the services that the people at KKI provided. We would not be in this position right now without them. I will spend the rest of my life feeling blessed that Jack was able to go to such an amazing program. We are forever indebted to them.
Friday, November 9, 2012
Monday, May 21, 2012
Goodness!
Where did the time go?! I can't believe I haven't updated since the 8th! Man. I feel like a slacker! Anyway, here's a short update on how we're doing at home!
Jack is doing great! We're letting him doing more self feeding since he's suddenly Mr. Independent but he's still doing great. There are still fights over certain food, broccoli, mashed potatoes and cauliflower come to mind. But more often than not, he fights the first bite and realizes that he's got to eat it regardless and will start eating it himself. We've definitely established a good routine with him here. One thing we need to start doing is introducing new foods but for some reason we can't think of any good ones to try. The only new food he's started since being home is fresh pineapple.
So feeding is going really, really well AND yesterday he decided he was ready to Potty Train. Can I get a Hallelujah? Yesterday went pretty well. A few instances of not getting on the Potty fast enough but for the most part, he did it without accident from 5 pm (when he first told me he needed to pee on the Potty) until 830 pm when we put on a diaper to send him to bed. Hopefully this is the start of the downfall of diapers! I wouldn't know what to do with myself with only kid in diapers!
This post is a jumbled mess so I apologize for jumping around a ton.
So this weekend we had his third birthday party! I can't believe that he is going to be three tomorrow! Anyway, his Octonaut birthday party went pretty well. Since he's only going to be three I didn't worry so much about games for the kids as we rented a bounce house. My decorations crapped out but I don't think anyone cared. Everyone seemed to have a good time and I know Jack was happy to see all his friends!
I, again, forgot to take any pictures, like I've done at every other birthday party. Oy. But I did remember to take some pictures of the cake! So here it is!
So tomorrow Little Man turns three. Where in the world has time gone?! I can't believe that he's already three! I asked him what he wanted for his birthday dinner and he said "Salmon" I think. I have no clue where he got that from but I think we'll make him his favorite of either fish sticks or chicken nuggets for dinner.
I probably won't update until next week since we're headed out of town for our first vacation as a family of four! We're going to Williamsburg for two days! I can't wait, I think we all need a little vacation time!
Jack is doing great! We're letting him doing more self feeding since he's suddenly Mr. Independent but he's still doing great. There are still fights over certain food, broccoli, mashed potatoes and cauliflower come to mind. But more often than not, he fights the first bite and realizes that he's got to eat it regardless and will start eating it himself. We've definitely established a good routine with him here. One thing we need to start doing is introducing new foods but for some reason we can't think of any good ones to try. The only new food he's started since being home is fresh pineapple.
So feeding is going really, really well AND yesterday he decided he was ready to Potty Train. Can I get a Hallelujah? Yesterday went pretty well. A few instances of not getting on the Potty fast enough but for the most part, he did it without accident from 5 pm (when he first told me he needed to pee on the Potty) until 830 pm when we put on a diaper to send him to bed. Hopefully this is the start of the downfall of diapers! I wouldn't know what to do with myself with only kid in diapers!
This post is a jumbled mess so I apologize for jumping around a ton.
So this weekend we had his third birthday party! I can't believe that he is going to be three tomorrow! Anyway, his Octonaut birthday party went pretty well. Since he's only going to be three I didn't worry so much about games for the kids as we rented a bounce house. My decorations crapped out but I don't think anyone cared. Everyone seemed to have a good time and I know Jack was happy to see all his friends!
I, again, forgot to take any pictures, like I've done at every other birthday party. Oy. But I did remember to take some pictures of the cake! So here it is!
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| Octonauts Cake! |
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| Sea Creature Cupcake Tree! |
So tomorrow Little Man turns three. Where in the world has time gone?! I can't believe that he's already three! I asked him what he wanted for his birthday dinner and he said "Salmon" I think. I have no clue where he got that from but I think we'll make him his favorite of either fish sticks or chicken nuggets for dinner.
I probably won't update until next week since we're headed out of town for our first vacation as a family of four! We're going to Williamsburg for two days! I can't wait, I think we all need a little vacation time!
Tuesday, May 8, 2012
It's Tuesday.
I know, I know. I said I'd update this weekend. Honestly, this weekend was such a nice, relaxing weekend that I just didn't feel like it. So here it is Tuesday morning.
It's been...so so. About the same at the hospital actually. Some meals are going great. Some are really rough. Just depends. We're sticking to the protocol and not budging an inch on the rough meals. But its definitely different at home. Without people watching you, you're more inclined to get frustrated and to show it and there's a million and one distractions happening. Daphne's done eating and trying to climb in your lap. Oscar's trying to steal food off Jack's plate, the washer is running, the dishwasher is making noise, there are kids outside. All of this can make for one hectic feeding session. Luckily, we're all powering through it and no one seems worse for wear after a bad meal.
Since we've been home we've had 100% compliance meals where the movie was never turned off and he did great and we've had meals where I swear that kid saw 30 seconds of that movie and that was it. But we're getting there. I'm gonna see how the rest of today goes and tomorrow before I consider calling and requesting some outpatient. Not necessary because we want to work on anything else but maybe more as a scared straight tactic? Like you stop eating and you're coming back here, kiddo.
In other Jack news, can I just say how much I love love love timers? We've implemented the use of a timer for damn near everything in this kid's life and it makes such a difference. Time to clean up? Set a timer. Elephant noise and he knows what's happening and there's no tantrum. Same with the park and bed time and even playing with Pants! He responds so well to it! I feel kind of stupid for not knowing this before! The only thing the timer hasn't solved is the inevitable Bye Bye Pa meltdown but even those get the timer and they're getting shorter and less extreme.
I have to say, I know we've been home a whopping nearly 4 days now but I've had so many people comment to me about how he seems like a totally different kid. He engages with other kids instead of parallel play, he's social to everyone, he talks all.the.time. He doesn't scream when people come in the house or leave (minus Pa) and he just generally seems happy. This is another reason that I'll forever be thankful for our time there. They just didn't help him with his eating, they helped him with so many aspects. He's such happier kid. Probably because he's not malnourished and hungry all the time!
Anyway, I'll hopefully update Friday but if not, Sunday. I PROMISE! Until then. And as always. Thank you so much for all your continued support.
It's been...so so. About the same at the hospital actually. Some meals are going great. Some are really rough. Just depends. We're sticking to the protocol and not budging an inch on the rough meals. But its definitely different at home. Without people watching you, you're more inclined to get frustrated and to show it and there's a million and one distractions happening. Daphne's done eating and trying to climb in your lap. Oscar's trying to steal food off Jack's plate, the washer is running, the dishwasher is making noise, there are kids outside. All of this can make for one hectic feeding session. Luckily, we're all powering through it and no one seems worse for wear after a bad meal.
Since we've been home we've had 100% compliance meals where the movie was never turned off and he did great and we've had meals where I swear that kid saw 30 seconds of that movie and that was it. But we're getting there. I'm gonna see how the rest of today goes and tomorrow before I consider calling and requesting some outpatient. Not necessary because we want to work on anything else but maybe more as a scared straight tactic? Like you stop eating and you're coming back here, kiddo.
In other Jack news, can I just say how much I love love love timers? We've implemented the use of a timer for damn near everything in this kid's life and it makes such a difference. Time to clean up? Set a timer. Elephant noise and he knows what's happening and there's no tantrum. Same with the park and bed time and even playing with Pants! He responds so well to it! I feel kind of stupid for not knowing this before! The only thing the timer hasn't solved is the inevitable Bye Bye Pa meltdown but even those get the timer and they're getting shorter and less extreme.
I have to say, I know we've been home a whopping nearly 4 days now but I've had so many people comment to me about how he seems like a totally different kid. He engages with other kids instead of parallel play, he's social to everyone, he talks all.the.time. He doesn't scream when people come in the house or leave (minus Pa) and he just generally seems happy. This is another reason that I'll forever be thankful for our time there. They just didn't help him with his eating, they helped him with so many aspects. He's such happier kid. Probably because he's not malnourished and hungry all the time!
Anyway, I'll hopefully update Friday but if not, Sunday. I PROMISE! Until then. And as always. Thank you so much for all your continued support.
Friday, May 4, 2012
That's All She Wrote.
Well, ladies and gentlemen, we did it. Today was our very last day of as an inpatient of the Kennedy Krieger Feeding Clinic. We're home.
Whew. I feel like I need to repeat that. Whew. What a crazy, amazing, stressful, wonderful, insane, intense 55 days these were. Before I say anything else let me start by saying this:
To everyone who works on the 3rd floor:
Thank you, thank you, thank you, thank you. It was our home for 55 days. You became our friends. You became our family. We came to care about you just like you did about us. We learned your names and your faces and a little bit about your lives outside of your work. We came to love you. You made our mornings and evenings and nights there good. You learned how to handle Jack and most importantly, you learned how to handle me!! You all were kind and caring and everyone was always there with smiles or tissues if need be. I'll never be able to say thank you for all the wonderful care Jack received in his time in 309 but I'll remember each and every one of you fondly.
To the 2nd floor:
Oh goodness, where do I even begin?! How do you say thank you for the gift that you've given us? To everyone that worked weekends to do his therapies or dodged spoons during his meals or played with him during playroom or watched him during unstaffed hours so I could shower, thank you from the bottom of my heart. You all are truly amazing at your jobs and I feel blessed that my child had the opportunity to meet you. I don't have the words to properly or eloquently express my gratitude so I'll just say thank you again. For the rest of my life I will treasure this experience.
So yes. We're home. Man. It feels GOOD. Jack is THRILLED. THRILLED. Oddly enough the most thrilling thing for him is that we have a cat?! But we had the cat before he left and in fact, we've had that same dumb cat since before he was born but still, he spent the better part of the first hour being home chasing poor Oscar around. "Hello kitty." "Come here kitty." "Don't run kitty." Yea, the cat is a big hit. Even bigger than the Octonaut toys I ordered from England. Sigh.
Once the excitement of our old pet wore off, he ran around looking around the house looking at everything. He and Daphne chased each other and he wanted her to be with him everywhere he was. "Come on, Natknee Kate." He was stinking adorable. Around 430 we fed him his snack using his protocol. It went PERFECTLY. Honestly. It was perfect. No issues whatsoever.
After snack Steve left to go pick up some pizza since neither of us thought ahead enough to think about dinner for he, Daphne and I. Jack's dinner was already planned and measured out but the three of us were left high and dry. He gets back with pizza and my Dad is here and we're all eating and Jack walks up to me and points at my plate and says "Pizza." I said, "Yes, did you want some?" He nodded and grabbed my hand and took and small bite and walked away. A few minutes later he walked back over and took another tiny bite. About five minutes passed before he walked over, grabbed a whole piece off my Dad's plate, said "Mmm pizza" and walked away. Damn if he didn't eat the whole thing too. I adjusted his dinner amounts when I fed him a little while later to account for the pizza but we were all thrilled and shocked!
He 1. ate pizza WILLINGLY! Pizza has been one of those foods where he tolerates one day and then hates it the next and 2. he was taking appropriate sized bites off of a larger piece! There was no shoving the whole piece in his mouth!
Man. What a night. Now, to be honest, we aren't expecting every night to be like this. Dinner was a great meal comparatively. He did throw his spoon once but honestly, one time is not the end of the world, especially not after such a huge transition. If it keeps happening then we'll contact his feeding team and talk about a resolution but we'll give him a few days.
Okay, I feel like this is getting long enough. I'll try to update at the end of the weekend and let everyone know how he does. Thanks if you hung in there through this incredibly long entry.
Whew. I feel like I need to repeat that. Whew. What a crazy, amazing, stressful, wonderful, insane, intense 55 days these were. Before I say anything else let me start by saying this:
To everyone who works on the 3rd floor:
Thank you, thank you, thank you, thank you. It was our home for 55 days. You became our friends. You became our family. We came to care about you just like you did about us. We learned your names and your faces and a little bit about your lives outside of your work. We came to love you. You made our mornings and evenings and nights there good. You learned how to handle Jack and most importantly, you learned how to handle me!! You all were kind and caring and everyone was always there with smiles or tissues if need be. I'll never be able to say thank you for all the wonderful care Jack received in his time in 309 but I'll remember each and every one of you fondly.
To the 2nd floor:
Oh goodness, where do I even begin?! How do you say thank you for the gift that you've given us? To everyone that worked weekends to do his therapies or dodged spoons during his meals or played with him during playroom or watched him during unstaffed hours so I could shower, thank you from the bottom of my heart. You all are truly amazing at your jobs and I feel blessed that my child had the opportunity to meet you. I don't have the words to properly or eloquently express my gratitude so I'll just say thank you again. For the rest of my life I will treasure this experience.
So yes. We're home. Man. It feels GOOD. Jack is THRILLED. THRILLED. Oddly enough the most thrilling thing for him is that we have a cat?! But we had the cat before he left and in fact, we've had that same dumb cat since before he was born but still, he spent the better part of the first hour being home chasing poor Oscar around. "Hello kitty." "Come here kitty." "Don't run kitty." Yea, the cat is a big hit. Even bigger than the Octonaut toys I ordered from England. Sigh.
Once the excitement of our old pet wore off, he ran around looking around the house looking at everything. He and Daphne chased each other and he wanted her to be with him everywhere he was. "Come on, Natknee Kate." He was stinking adorable. Around 430 we fed him his snack using his protocol. It went PERFECTLY. Honestly. It was perfect. No issues whatsoever.
After snack Steve left to go pick up some pizza since neither of us thought ahead enough to think about dinner for he, Daphne and I. Jack's dinner was already planned and measured out but the three of us were left high and dry. He gets back with pizza and my Dad is here and we're all eating and Jack walks up to me and points at my plate and says "Pizza." I said, "Yes, did you want some?" He nodded and grabbed my hand and took and small bite and walked away. A few minutes later he walked back over and took another tiny bite. About five minutes passed before he walked over, grabbed a whole piece off my Dad's plate, said "Mmm pizza" and walked away. Damn if he didn't eat the whole thing too. I adjusted his dinner amounts when I fed him a little while later to account for the pizza but we were all thrilled and shocked!
He 1. ate pizza WILLINGLY! Pizza has been one of those foods where he tolerates one day and then hates it the next and 2. he was taking appropriate sized bites off of a larger piece! There was no shoving the whole piece in his mouth!
Man. What a night. Now, to be honest, we aren't expecting every night to be like this. Dinner was a great meal comparatively. He did throw his spoon once but honestly, one time is not the end of the world, especially not after such a huge transition. If it keeps happening then we'll contact his feeding team and talk about a resolution but we'll give him a few days.
Okay, I feel like this is getting long enough. I'll try to update at the end of the weekend and let everyone know how he does. Thanks if you hung in there through this incredibly long entry.
Sunday, April 29, 2012
It's the FINAL COUNTDOWN.
After reading that title, I'm really hoping that you're singing that song. I know I am. This is it folks, Week Seven is at a close and we'll be turning the corner onto the Monday of the FINAL WEEK.
This week has had its ups and downs. Jack's had some rough meals. He no longer wants to follow all the rules and protocol and has started pitching spoons again. BUT they're assuring me again, that this is normal and that most kids do it. He's trying his hardest to get the control back in meals that he lost so he's acting out. As long as we stay strong, which we are, we will win this battle again and he should get back to being the happy little eater that we all know is in there.
I started discharge paperwork on Friday. So surreal. It'll be crazy to bring him home finally. At this point I think he thinks that that is his new home and he's never coming back to the house. I can't wait to see his face when he realizes where he is going.
As always, even with the new tougher meals, he constantly inspires me. He has been so good about this entire situation and I feel ever blessed to be his mother. He is such a strong little boy and I'm so proud of him.
So one more week to go. What's that mean for us? This week will be a little crazy! Steve is bringing Daphne down on Tuesday and Thursday for "Family Meals" so he can get used to eating while other people are eating. Hopefully it goes well and he responds well to it. I know he's super excited to see Daphne so hopefully, he'll be excited to eat with her. Thursday we have our Discharge Meeting with his entire team. I'm anxious to see what their final thoughts are. I'll also be learning how to cook everything and weigh and measure it for his meals and snacks. Our fridge/freezer are certainly going to look different for awhile! We'll have 2 oz Gladware cups galore in there.
The best thing about him getting out is that Steve will be on leave for the first 3.5 weeks so I won't be immediately in charge of cooking and serving all four meals every day for a little while. Plus I can't wait for the FOUR of us to just lounge in the house for a few days. It'll be much needed.
Well, five more days. I can't wait to write next week's entry while Jack plays in the living room. So excited. Anyway, thanks again for reading. Until next week!
This week has had its ups and downs. Jack's had some rough meals. He no longer wants to follow all the rules and protocol and has started pitching spoons again. BUT they're assuring me again, that this is normal and that most kids do it. He's trying his hardest to get the control back in meals that he lost so he's acting out. As long as we stay strong, which we are, we will win this battle again and he should get back to being the happy little eater that we all know is in there.
I started discharge paperwork on Friday. So surreal. It'll be crazy to bring him home finally. At this point I think he thinks that that is his new home and he's never coming back to the house. I can't wait to see his face when he realizes where he is going.
As always, even with the new tougher meals, he constantly inspires me. He has been so good about this entire situation and I feel ever blessed to be his mother. He is such a strong little boy and I'm so proud of him.
So one more week to go. What's that mean for us? This week will be a little crazy! Steve is bringing Daphne down on Tuesday and Thursday for "Family Meals" so he can get used to eating while other people are eating. Hopefully it goes well and he responds well to it. I know he's super excited to see Daphne so hopefully, he'll be excited to eat with her. Thursday we have our Discharge Meeting with his entire team. I'm anxious to see what their final thoughts are. I'll also be learning how to cook everything and weigh and measure it for his meals and snacks. Our fridge/freezer are certainly going to look different for awhile! We'll have 2 oz Gladware cups galore in there.
The best thing about him getting out is that Steve will be on leave for the first 3.5 weeks so I won't be immediately in charge of cooking and serving all four meals every day for a little while. Plus I can't wait for the FOUR of us to just lounge in the house for a few days. It'll be much needed.
Well, five more days. I can't wait to write next week's entry while Jack plays in the living room. So excited. Anyway, thanks again for reading. Until next week!
Saturday, April 21, 2012
Big News!
Well, week six has come and gone! Overall it was a MUCH better week than week five! Jack's doing great! We've gotten a handle on his spoon throwing and gotten his drinks under control. This Mama is no longer stressing out!
Apparently the drinks were because he wanted to hold the cup, that's all. Once we switched that, it's been fairly smooth sailing.
New foods are being introduced a little slower since his menu is so big at this point. He tried celery with peanut butter in OT and hot dog in feeding. Steve said that he's trying birthday cake today at lunch since its been a goal of ours to have him eat his birthday cake for the first time. I know sometime this week he'll be trying CHEESEBURGER! Crazy, huh?!
I'm gonna keep this entry pretty short since I feel like they're all sounding exactly the same but like the title states, I do have some big news! So here it is!
OUR BIG NEWS!
Jack is getting out early!! Just 3 days early but still, we're all BEYOND excited! It moves our current day count from 16 to 13! He gets out on Friday, May 4th! I know its only 72 hours early but I can't tell you what this does for my sanity to think that next weekend is our LAST joint custody weekend and we'll soon be counting down from single digit days!
Week Seven and Eight are gonna be crazy. We're going to be feeding Jack in the hallway and the cafeteria and his room and everywhere so he can get used to eating other places than the Feeding Room. We'll also be doing Family Meals where Steve, Jack, Daphne and I all eat together! I can't believe that we're so close to being done!
Well, folks. Ms. Daphne is taking a nap (supposedly as there is a lot of stomping upstairs) so I'm going to enjoy some alone time.
Apparently the drinks were because he wanted to hold the cup, that's all. Once we switched that, it's been fairly smooth sailing.
New foods are being introduced a little slower since his menu is so big at this point. He tried celery with peanut butter in OT and hot dog in feeding. Steve said that he's trying birthday cake today at lunch since its been a goal of ours to have him eat his birthday cake for the first time. I know sometime this week he'll be trying CHEESEBURGER! Crazy, huh?!
I'm gonna keep this entry pretty short since I feel like they're all sounding exactly the same but like the title states, I do have some big news! So here it is!
OUR BIG NEWS!
Jack is getting out early!! Just 3 days early but still, we're all BEYOND excited! It moves our current day count from 16 to 13! He gets out on Friday, May 4th! I know its only 72 hours early but I can't tell you what this does for my sanity to think that next weekend is our LAST joint custody weekend and we'll soon be counting down from single digit days!
Week Seven and Eight are gonna be crazy. We're going to be feeding Jack in the hallway and the cafeteria and his room and everywhere so he can get used to eating other places than the Feeding Room. We'll also be doing Family Meals where Steve, Jack, Daphne and I all eat together! I can't believe that we're so close to being done!
Well, folks. Ms. Daphne is taking a nap (supposedly as there is a lot of stomping upstairs) so I'm going to enjoy some alone time.
Sunday, April 15, 2012
22 Days to Go!
Well week FIVE is drawing to a close. Amen. Not lying, it was the hardest week since week one for a variety of reasons and I, for one, am glad that its over and done with.
Jack. Hmm. He had a rough week. Steve trained last weekend to feed him and it didn't go as smoothly as everyone was hoping. From there the week seemed to be a rollercoaster. Some meals were perfect, others were absolute nightmares. He has started throwing his spoon in an attempt to not have to eat a certain food or if he's too tired to chew or if he's just tired. Or one of many other reasons. We've adjusted his protocol to try to help curb the problem but I'm not sure if its helping just yet.
They all told me in week one to expect this. That even the kids that are doing amazing and great eventually start fighting back and that they want them to do it here rather than at home. I agree with them there but still, its hard for me to see him come off of 2 1/2 great weeks to suddenly throwing spoons and crying again. I know he'll get over and work past it but its draining nonetheless.
We had some roommate issues in the beginning of the week that were leading to me getting very, very little sleep. Come Friday I was a MESS. Seriously. Ask anyone of the 40 some people that saw me crying in the hallway over a small thing and they'll tell you. I was a MESS. Now that I've had a good 10 hours of sleep in me, I'm feeling like I can head back to KKI this evening and kick Week Six's ass.
Foodwise, because of his newfound pitcher's arm, we didn't try as many new ones this week as I would have liked. He tried Watermelon. It's 50/50 on whether he likes it. Depends on the day. Mashed Potatoes. They're instant. He doesn't like them. I don't blame him : P And Macaroni and Cheese. He eats it with no problems about 90% of the time. It's hard to say if he likes it because he makes a tortured face for any food that he really has to chew.
So here we stand at the beginning of Week Six with 22 days until Discharge Day. I'm ready to go home, he's ready to go home but I'm not ready to be done with it just yet. I'm taking his highchair back tonight so they can train him in that versus the giant, Rifton that he eats in now because 1. we don't have room for one in our house and 2. its a $500 highchair.
He's still doing good in OT and ST, they're mainly focusing on getting him to take bites of things, not just shoving the whole thing in his mouth. Like he did with NutraGrain bar and fish sticks this week.
Yesterday he was sick. 101 fever and needed breathing treatments during the day and at all. Poor kid. Daddy reports that he's back to his normal self today though.
Before I sign off, I'll leave with a funny story. During his meals, he watches TV as his reward. He was bored with Octonauts so we switched to Special Agent Oso. WELLLLLLL, we learned the hard way that we should screen those videos. I won't go into details and I'm fairly sure its safe for work since it made it through KKI's ridiculous firewall. So here you go. Enjoy. I laughed so hard I could barely finish the meal.
http://youtu.be/qlVECGk4Md4
Until next week.
Jack. Hmm. He had a rough week. Steve trained last weekend to feed him and it didn't go as smoothly as everyone was hoping. From there the week seemed to be a rollercoaster. Some meals were perfect, others were absolute nightmares. He has started throwing his spoon in an attempt to not have to eat a certain food or if he's too tired to chew or if he's just tired. Or one of many other reasons. We've adjusted his protocol to try to help curb the problem but I'm not sure if its helping just yet.
They all told me in week one to expect this. That even the kids that are doing amazing and great eventually start fighting back and that they want them to do it here rather than at home. I agree with them there but still, its hard for me to see him come off of 2 1/2 great weeks to suddenly throwing spoons and crying again. I know he'll get over and work past it but its draining nonetheless.
We had some roommate issues in the beginning of the week that were leading to me getting very, very little sleep. Come Friday I was a MESS. Seriously. Ask anyone of the 40 some people that saw me crying in the hallway over a small thing and they'll tell you. I was a MESS. Now that I've had a good 10 hours of sleep in me, I'm feeling like I can head back to KKI this evening and kick Week Six's ass.
Foodwise, because of his newfound pitcher's arm, we didn't try as many new ones this week as I would have liked. He tried Watermelon. It's 50/50 on whether he likes it. Depends on the day. Mashed Potatoes. They're instant. He doesn't like them. I don't blame him : P And Macaroni and Cheese. He eats it with no problems about 90% of the time. It's hard to say if he likes it because he makes a tortured face for any food that he really has to chew.
So here we stand at the beginning of Week Six with 22 days until Discharge Day. I'm ready to go home, he's ready to go home but I'm not ready to be done with it just yet. I'm taking his highchair back tonight so they can train him in that versus the giant, Rifton that he eats in now because 1. we don't have room for one in our house and 2. its a $500 highchair.
He's still doing good in OT and ST, they're mainly focusing on getting him to take bites of things, not just shoving the whole thing in his mouth. Like he did with NutraGrain bar and fish sticks this week.
Yesterday he was sick. 101 fever and needed breathing treatments during the day and at all. Poor kid. Daddy reports that he's back to his normal self today though.
Before I sign off, I'll leave with a funny story. During his meals, he watches TV as his reward. He was bored with Octonauts so we switched to Special Agent Oso. WELLLLLLL, we learned the hard way that we should screen those videos. I won't go into details and I'm fairly sure its safe for work since it made it through KKI's ridiculous firewall. So here you go. Enjoy. I laughed so hard I could barely finish the meal.
http://youtu.be/qlVECGk4Md4
Until next week.
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