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!
Sunday, April 29, 2012
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.
Sunday, April 8, 2012
Week Four!
We've reached the halfway point! It's all downhill from here, baby!
Jack is doing great. We've had a few rough days but I don't expect him to be on pointe every single day. He's still an almost three year old, feeding issues aside, and they all push buttons on different days.
Starting Monday I sat in the room with him while he ate instead of the Observation Room and he seemed to have no issue with the change. Tuesday they taught me the Feeding Protocol, which consisted of me feeding his main therapist apple sauce in one of the most awkward 45 minutes of my life. BUT Tuesday night I fed him dinner and have fed him every single meal since then that I've been there for. Steve got trained yesterday so now we both now how to feed him!
They slowed down on new foods this week because they were more concerned about him accepting bites from me but we did get two new foods in, cauliflower-which he tolerated and pizza. Pizza. What a finicky food pizza is. Bite one of pizza he loved it. At the next meal, he threw it. Same with the meal after that. BUT once you get it in his mouth, he seems to like it. No faces, no gagging. Oy. He's a butt sometimes. :P
In ST and OT, he's doing great. He ate Nutter Butters and Rice Krispie Treats in ST this week to work on lateral chewing and he ate fish sticks in OT on Friday to work on pacing himself. Apparently this kid can tear up some fish sticks.
As far as how long, we're still looking at May 7th. Which, honestly, is fine with me. Tomorrow starts Week FIVE! So May 7th really isn't that far off. We can totally do this plus if TriCare will pay for it, I'd love for him to have as much exposure to the protocol as possible before we go home. And honestly, as hard as it is to be away from Daphne and Steve and all our friends at home, I know Jack is going to have a really hard time leaving all his friends at KKI and the staff. Everyone there is wonderful and has made this entire adventure so much more pleasant.
So that's where we are. I know this week we're looking to add macaroni and cheese, mashed potatoes and WATERMELON because Jack asks for it every.single.day. The kid has never in his life had watermelon and now he's obsessed with it. Monkey Lunchbox on his iPad has been a good influence!
Until my Week Five update!
Jack is doing great. We've had a few rough days but I don't expect him to be on pointe every single day. He's still an almost three year old, feeding issues aside, and they all push buttons on different days.
Starting Monday I sat in the room with him while he ate instead of the Observation Room and he seemed to have no issue with the change. Tuesday they taught me the Feeding Protocol, which consisted of me feeding his main therapist apple sauce in one of the most awkward 45 minutes of my life. BUT Tuesday night I fed him dinner and have fed him every single meal since then that I've been there for. Steve got trained yesterday so now we both now how to feed him!
They slowed down on new foods this week because they were more concerned about him accepting bites from me but we did get two new foods in, cauliflower-which he tolerated and pizza. Pizza. What a finicky food pizza is. Bite one of pizza he loved it. At the next meal, he threw it. Same with the meal after that. BUT once you get it in his mouth, he seems to like it. No faces, no gagging. Oy. He's a butt sometimes. :P
In ST and OT, he's doing great. He ate Nutter Butters and Rice Krispie Treats in ST this week to work on lateral chewing and he ate fish sticks in OT on Friday to work on pacing himself. Apparently this kid can tear up some fish sticks.
As far as how long, we're still looking at May 7th. Which, honestly, is fine with me. Tomorrow starts Week FIVE! So May 7th really isn't that far off. We can totally do this plus if TriCare will pay for it, I'd love for him to have as much exposure to the protocol as possible before we go home. And honestly, as hard as it is to be away from Daphne and Steve and all our friends at home, I know Jack is going to have a really hard time leaving all his friends at KKI and the staff. Everyone there is wonderful and has made this entire adventure so much more pleasant.
So that's where we are. I know this week we're looking to add macaroni and cheese, mashed potatoes and WATERMELON because Jack asks for it every.single.day. The kid has never in his life had watermelon and now he's obsessed with it. Monkey Lunchbox on his iPad has been a good influence!
Until my Week Five update!
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