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.
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!
Saturday, March 31, 2012
The Third Week!
The third week is drawing to a close! I cannot believe that Monday marks the first day of week four! This treatment is flying by! (Some days!)
Jack is doing great. Seriously. He's wonderful. We still have meltdowns. We still have tears and fights and all that but food-wise, the kid is on FIRE! He's tried chicken nuggets, pancakes, broccoli, spaghetti, carrots and green beans. They've even got him re-eating apple sauce. He's really gotten the hang of this eating thing!
He's definitely got clear favorites about food. He loves waffles, grilled cheese, peanut butter sandwich, carrots and bananas. He struggles with broccoli but he's never once spit it out and always powers through it.
He's learning how to drink from a cup, something he could never do before because he never had the correct muscle coordination in his face until now. Again. He's a champ.
Because of the work with his Speech Therapist, he happily brushes his teeth twice a day! SAY WHAT?! Before we literally had to pin him down while we brushed them and he cried and gagged. Now? He stands there while I brush and count to 20 per area and claps when we're all done.
Emotionally, he's starting to have a hard time. Up until now, it was new and fun but its clear he wants to go home. We've had to suspend visitors because he doesn't get why they won't take him home. Every visitation was resulting in a 3 hour crying tantrum (and a bloody nose once for me) so we're halting them for a bit. Poor kid. I know he doesn't understand and that's what makes it so hard for me to watch.
I try to focus on the positives of this. So I'm listing my top ten best things about this treatment:
1. Jack and I both have met some incredible people in the last three weeks.
2. His vocabulary has EXPLODED. Seriously. He is constantly talking. Repeating everything. Saying spontaneous sentences. The whole shebang. It's crazy to listen to him. The nurses crack up when he walks up the Nurses' Station to ask for milk and the conversation goes as follows.
Jack: "Milk peas." The nurse says "Ok" and goes and gets it.
Jack: "Tank you, welcome. See you soon."
3. He is learning that he can see me throughout the day and doesn't NEED me to be with him all the time.
4. He is less dependent on TV to help him calm down when he gets upset and needs to "reset" himself.
5. He is sleeping better.
6. He's having less temper tantrums there versus home. Between his speech improving and my parenting improving, we're more in sync with each other and thus can understand each other better.
7. He's becoming more social with other kids.
8. He's learning to trust other adults, not just Mommy and Daddy.
9. I don't have to pay for diapers for him for 8 weeks! (LOL Thanks TriCare!)
10. He's eating! That's the best and biggest reason!
So there you go! This week's update and my 10 ten list. I have a on going copy in my notebook and whenever I'm feeling a pity party coming on, I glance at it. I have a million and one things to be thankful for and it helps to remind me. This may not be the ideal situation but we could have it a lot worse. It's only temporary and it'll be over before we know it!
Until next week!
Jack is doing great. Seriously. He's wonderful. We still have meltdowns. We still have tears and fights and all that but food-wise, the kid is on FIRE! He's tried chicken nuggets, pancakes, broccoli, spaghetti, carrots and green beans. They've even got him re-eating apple sauce. He's really gotten the hang of this eating thing!
He's definitely got clear favorites about food. He loves waffles, grilled cheese, peanut butter sandwich, carrots and bananas. He struggles with broccoli but he's never once spit it out and always powers through it.
He's learning how to drink from a cup, something he could never do before because he never had the correct muscle coordination in his face until now. Again. He's a champ.
Because of the work with his Speech Therapist, he happily brushes his teeth twice a day! SAY WHAT?! Before we literally had to pin him down while we brushed them and he cried and gagged. Now? He stands there while I brush and count to 20 per area and claps when we're all done.
Emotionally, he's starting to have a hard time. Up until now, it was new and fun but its clear he wants to go home. We've had to suspend visitors because he doesn't get why they won't take him home. Every visitation was resulting in a 3 hour crying tantrum (and a bloody nose once for me) so we're halting them for a bit. Poor kid. I know he doesn't understand and that's what makes it so hard for me to watch.
I try to focus on the positives of this. So I'm listing my top ten best things about this treatment:
1. Jack and I both have met some incredible people in the last three weeks.
2. His vocabulary has EXPLODED. Seriously. He is constantly talking. Repeating everything. Saying spontaneous sentences. The whole shebang. It's crazy to listen to him. The nurses crack up when he walks up the Nurses' Station to ask for milk and the conversation goes as follows.
Jack: "Milk peas." The nurse says "Ok" and goes and gets it.
Jack: "Tank you, welcome. See you soon."
3. He is learning that he can see me throughout the day and doesn't NEED me to be with him all the time.
4. He is less dependent on TV to help him calm down when he gets upset and needs to "reset" himself.
5. He is sleeping better.
6. He's having less temper tantrums there versus home. Between his speech improving and my parenting improving, we're more in sync with each other and thus can understand each other better.
7. He's becoming more social with other kids.
8. He's learning to trust other adults, not just Mommy and Daddy.
9. I don't have to pay for diapers for him for 8 weeks! (LOL Thanks TriCare!)
10. He's eating! That's the best and biggest reason!
So there you go! This week's update and my 10 ten list. I have a on going copy in my notebook and whenever I'm feeling a pity party coming on, I glance at it. I have a million and one things to be thankful for and it helps to remind me. This may not be the ideal situation but we could have it a lot worse. It's only temporary and it'll be over before we know it!
Until next week!
Sunday, March 25, 2012
Week Two!
I've been really excited to write this week's update! It's been a really good week for us, with a lot of good news so here it goes!
Jack is doing W.O.N.D.E.R.F.U.L.L.Y. He is beating everyone's expectations. With how severe his separation anxiety was last week and how rough the first few new food meals were, everyone was preparing for the worst.
On Monday they started making him eat the new foods they offered. The first bite of banana at lunch took 8 minutes. At dinner it took 4. At breakfast the next morning it took less than 30 seconds. At lunch he picked it up and ate it all by himself!
Ever since Tuesday, he no longer fights the bite of new food. The way it works is, he gets four foods a meal. He takes 19 bites of those foods, 5 bites, 5 bites, 5 bites and 4 bites. In between his bites he gets praised and gets to watch Octonauts and play with Playdoh. At the end of his normal bites he has to try one new bite to be done. He has no problem with the last bite of food. No fighting, no gagging, no crying. Just chewing and swallowing!
This week in Feeding he's eaten Banana, Waffle, Chocolate Pudding, Apple (which he stopped because he was getting hives after eating them), Grilled Cheese and Peanut Butter Sandwich! In addition, he's tried Pretzels in Speech Therapy to teach him to chew with his back teeth and he's eaten Cheerios and Cheese Puffs to work on texture issues in Occupational Therapy.
This morning at breakfast he's trying steamed Broccoli! Steve's going to call and let me know how it goes! Tomorrow they're starting Spaghetti!
As of right now, his discharge date is set at May 7th. The full 8 weeks but I was talking to his social worker and they're thinking that he *might* be out sometime between April 23rd and April 30th, making it a 6 to 7 week admission!
That's a good update for now! I'll update next week with his new list of foods! Hopefully week three goes as well as week two!
Oh, if anyone is interested, his address at the hospital is
Jack W.
C/O Kennedy Krieger Institute
Room 309
707 North Broadway
Baltimore, MD 21205
Until next week!
Jack is doing W.O.N.D.E.R.F.U.L.L.Y. He is beating everyone's expectations. With how severe his separation anxiety was last week and how rough the first few new food meals were, everyone was preparing for the worst.
On Monday they started making him eat the new foods they offered. The first bite of banana at lunch took 8 minutes. At dinner it took 4. At breakfast the next morning it took less than 30 seconds. At lunch he picked it up and ate it all by himself!
Ever since Tuesday, he no longer fights the bite of new food. The way it works is, he gets four foods a meal. He takes 19 bites of those foods, 5 bites, 5 bites, 5 bites and 4 bites. In between his bites he gets praised and gets to watch Octonauts and play with Playdoh. At the end of his normal bites he has to try one new bite to be done. He has no problem with the last bite of food. No fighting, no gagging, no crying. Just chewing and swallowing!
This week in Feeding he's eaten Banana, Waffle, Chocolate Pudding, Apple (which he stopped because he was getting hives after eating them), Grilled Cheese and Peanut Butter Sandwich! In addition, he's tried Pretzels in Speech Therapy to teach him to chew with his back teeth and he's eaten Cheerios and Cheese Puffs to work on texture issues in Occupational Therapy.
This morning at breakfast he's trying steamed Broccoli! Steve's going to call and let me know how it goes! Tomorrow they're starting Spaghetti!
As of right now, his discharge date is set at May 7th. The full 8 weeks but I was talking to his social worker and they're thinking that he *might* be out sometime between April 23rd and April 30th, making it a 6 to 7 week admission!
That's a good update for now! I'll update next week with his new list of foods! Hopefully week three goes as well as week two!
Oh, if anyone is interested, his address at the hospital is
Jack W.
C/O Kennedy Krieger Institute
Room 309
707 North Broadway
Baltimore, MD 21205
Until next week!
Saturday, March 17, 2012
The First Week
Happy Saint Patrick's Day!
I had every intention of updating this week, however, I was bummed to find out that KKI has blogger blocked :( I was forced to wait until today to write this much awaited (hopefully!) update about our first week at KKI's Feeding Clinic.
The first week was, in a word, intense. Monday was overwhelming to say the least. Getting admitted, meeting most of his team, saying goodbye to Steve and Daphne. Everything was overwhelming. Jack handled it pretty well. There were a few, quite a few meltdowns but luckily, the iPad was the saving grace and by bed time, we were both overtired. Neither of us slept very well, he woke up a lot, I woke up a lot. It was a very long night.
Tuesday was even worse. I think I cried all day long. I missed Daphne more than I ever thought I could. He freaked out at breakfast, even seeing a different type of yogurt, he cried at the sight of the playroom. I felt like all the other parents and playroom staff were judging me and I was terrified that it wasn't going to work. I couldn't leave him anywhere without him screaming Mommy! at the top of his lungs and crying. His main behavioral therapist found me crying in the playroom after his breakfast disaster and told me it was going to be okay. The rest of Tuesday we worked on his intense separation anxiety. He wasn't happy and I felt horrible.
We spent the rest of week building his trust with the staff, working on saying goodbye to Mommy and sometimes Theodore, following rules in the playroom and generally getting used to his schedule there. As of now I can say, some things have been much harder than I ever thought they'd be. I never thought it'd be so hard to walk away from the playroom and listen to him scream for 20 minutes. It sucked. A lot. but some things have been much easier. I have a lot more down time than I thought I would but I'm sure it'll change as his schedule gets busier next week. I was able to shower this week! TWICE! He adjusted much faster than the staff or I could have hoped. Tuesday it was 30 minute meltdowns to the point where they couldn't even do a meal and by Day 5 they started introducing non-preferred foods!
The staff there is amazing. His main feeding therapist H (we aren't allowed to put their full names in blogs), is wonderful. Her assistant Ma is great too. Jack responds wonderfully to both of them. He loves everyone in the playroom too. Our Social Worker Me is amazing, always around to see if she can help out or if I need anything. I haven't had too much to do with his OT or ST aside from brief meetings in the hallways after his sessions. The Feeding Clinic director is also overseeing Jack's case so I've had a meeting or two with him and so far, I have nothing but positive things to say.
The staff on the 3rd floor is the same. Everyone is great. Jack has all the nurses wrapped around his finger and loves to take walks around the floor and flirt with them. They know automatically when we show up at the Nurse's Station that we need a carton of milk and are always impressed and laugh when he says "thank you" and blows them a kiss or fist bumps them.
All in all I'm glad the first week is over. Not just because we're one week closer to be done but because I know we can handle it. We can do this. My son is a rockstar for handling as well as he has. My husband is great for having the house as clean as it was when I got home and my daughter is awesome for handling a Daddy Only household so well.
Now if you'll excuse me, I believe Daphne and I are playing tea!
I had every intention of updating this week, however, I was bummed to find out that KKI has blogger blocked :( I was forced to wait until today to write this much awaited (hopefully!) update about our first week at KKI's Feeding Clinic.
The first week was, in a word, intense. Monday was overwhelming to say the least. Getting admitted, meeting most of his team, saying goodbye to Steve and Daphne. Everything was overwhelming. Jack handled it pretty well. There were a few, quite a few meltdowns but luckily, the iPad was the saving grace and by bed time, we were both overtired. Neither of us slept very well, he woke up a lot, I woke up a lot. It was a very long night.
Tuesday was even worse. I think I cried all day long. I missed Daphne more than I ever thought I could. He freaked out at breakfast, even seeing a different type of yogurt, he cried at the sight of the playroom. I felt like all the other parents and playroom staff were judging me and I was terrified that it wasn't going to work. I couldn't leave him anywhere without him screaming Mommy! at the top of his lungs and crying. His main behavioral therapist found me crying in the playroom after his breakfast disaster and told me it was going to be okay. The rest of Tuesday we worked on his intense separation anxiety. He wasn't happy and I felt horrible.
We spent the rest of week building his trust with the staff, working on saying goodbye to Mommy and sometimes Theodore, following rules in the playroom and generally getting used to his schedule there. As of now I can say, some things have been much harder than I ever thought they'd be. I never thought it'd be so hard to walk away from the playroom and listen to him scream for 20 minutes. It sucked. A lot. but some things have been much easier. I have a lot more down time than I thought I would but I'm sure it'll change as his schedule gets busier next week. I was able to shower this week! TWICE! He adjusted much faster than the staff or I could have hoped. Tuesday it was 30 minute meltdowns to the point where they couldn't even do a meal and by Day 5 they started introducing non-preferred foods!
The staff there is amazing. His main feeding therapist H (we aren't allowed to put their full names in blogs), is wonderful. Her assistant Ma is great too. Jack responds wonderfully to both of them. He loves everyone in the playroom too. Our Social Worker Me is amazing, always around to see if she can help out or if I need anything. I haven't had too much to do with his OT or ST aside from brief meetings in the hallways after his sessions. The Feeding Clinic director is also overseeing Jack's case so I've had a meeting or two with him and so far, I have nothing but positive things to say.
The staff on the 3rd floor is the same. Everyone is great. Jack has all the nurses wrapped around his finger and loves to take walks around the floor and flirt with them. They know automatically when we show up at the Nurse's Station that we need a carton of milk and are always impressed and laugh when he says "thank you" and blows them a kiss or fist bumps them.
All in all I'm glad the first week is over. Not just because we're one week closer to be done but because I know we can handle it. We can do this. My son is a rockstar for handling as well as he has. My husband is great for having the house as clean as it was when I got home and my daughter is awesome for handling a Daddy Only household so well.
Now if you'll excuse me, I believe Daphne and I are playing tea!
Monday, March 12, 2012
And it starts.
Fact: I've started to write this entry about 6 times this weekend and either didn't like it and erased it or got too worked up and walked away or something else happened and it got forgotten about.
Fact: Despite KNOWING that it was happening today, I'm still freaking out.
Fact: I'm going to miss Daphne so much. And I feel awful leaving Steve by himself with a sick little girl. I'm praying that she feels better by tomorrow so she can go back to daycare. She's spending the day with Pa today.
Fact: I've travelled alone with an infant/young toddler before but packing for this seemed like we were packing to never return. There was so much to do.
Fact: I know its going to be hard, I know that a lot of it is going to suck. I'm sure that I'm going to cry at one point or another from either happiness or frustration but I also know that by the end of the everything, the program, the out patient therapy, the home visits, it will all have been worth it.
I do know that there will be WiFi at the hospital so I'll be able to access his blog, although I'm not entirely sure how often during the week I'll be able to update. I might only be able to update on Saturdays when Steve and I switch places. I'll have my cell with me at all times and although I'm not sure I'll be able to answer calls, I should be able to respond to texts.
I just wanted to take a second and say thank you to everyone who reads this and to everyone who has supported us on this long, hard journey. We couldn't have done it alone.
Fact: Despite KNOWING that it was happening today, I'm still freaking out.
Fact: I'm going to miss Daphne so much. And I feel awful leaving Steve by himself with a sick little girl. I'm praying that she feels better by tomorrow so she can go back to daycare. She's spending the day with Pa today.
Fact: I've travelled alone with an infant/young toddler before but packing for this seemed like we were packing to never return. There was so much to do.
Fact: I know its going to be hard, I know that a lot of it is going to suck. I'm sure that I'm going to cry at one point or another from either happiness or frustration but I also know that by the end of the everything, the program, the out patient therapy, the home visits, it will all have been worth it.
I do know that there will be WiFi at the hospital so I'll be able to access his blog, although I'm not entirely sure how often during the week I'll be able to update. I might only be able to update on Saturdays when Steve and I switch places. I'll have my cell with me at all times and although I'm not sure I'll be able to answer calls, I should be able to respond to texts.
I just wanted to take a second and say thank you to everyone who reads this and to everyone who has supported us on this long, hard journey. We couldn't have done it alone.
Monday, March 5, 2012
Wednesday, February 29, 2012
It's not OFFICIAL but...
we've got a date. Like a real, tangible date. Well, more like a week of dates but I'll take it. Sometime during the week of March 12th.
There's one more step that we have to complete before he can be admitted which I've already started working on. He has to pass a MRSA screening. I've already called his PCM at Barquist to see about acquiring one. Hopefully they don't take too long to get back to me about. I don't need to be the crazy lady that calls all the time (again, haha.)
I go tomorrow to sign all the forms for Daphne to start daycare. She'll start next Wednesday as long as everything is good to go. I want her to have a few days under her belt before Mommy and Jack disappear.
I don't know what's going to be harder, watching Jack go through this or leaving her for days at a time. This entire situation just sucks. I'm trying really hard not to throw myself an epic pity party but its not working today. I cried as soon as I opened the email and read that it was really, really happening. I know its in his best interest and most likely, he won't remember much of it in a few years but still it sucks that my little man has to go through this and that my little lady has to be without her Mommy and big brother for so long so he can get better.
I don't know what else to say other than our lives are going to be crazy for the next few weeks getting everything together. I have to label all his clothing, get his huge list of stuff to take together, plus pack for myself. I want to clean the house for Daphne and for Steve and get a few nights worth of dinner in the freezer for them so they aren't eating Little Caesar's every night.
I know we'll make it through it and we'll all be better for it in the end. Hopefully it'll work and Jack will start eating real food. No more Gogurt for breakfast, lunch and dinner with the occasional switch up of canned fruit. No more screaming when someone offers him a bite of chicken or banana or broccoli or pizza. Although, there could be a downside. He could start eating as much as Daphne and then we'll constantly be broke as our grocery bill will skyrocket!! Just kidding, that girl does have a huge appetite for only being 21 pounds though.
All in all, its for the best. I just have to remind myself of that. I just can't believe that in less than 2 weeks, my whole life is going to be upside down.
There's one more step that we have to complete before he can be admitted which I've already started working on. He has to pass a MRSA screening. I've already called his PCM at Barquist to see about acquiring one. Hopefully they don't take too long to get back to me about. I don't need to be the crazy lady that calls all the time (again, haha.)
I go tomorrow to sign all the forms for Daphne to start daycare. She'll start next Wednesday as long as everything is good to go. I want her to have a few days under her belt before Mommy and Jack disappear.
I don't know what's going to be harder, watching Jack go through this or leaving her for days at a time. This entire situation just sucks. I'm trying really hard not to throw myself an epic pity party but its not working today. I cried as soon as I opened the email and read that it was really, really happening. I know its in his best interest and most likely, he won't remember much of it in a few years but still it sucks that my little man has to go through this and that my little lady has to be without her Mommy and big brother for so long so he can get better.
I don't know what else to say other than our lives are going to be crazy for the next few weeks getting everything together. I have to label all his clothing, get his huge list of stuff to take together, plus pack for myself. I want to clean the house for Daphne and for Steve and get a few nights worth of dinner in the freezer for them so they aren't eating Little Caesar's every night.
I know we'll make it through it and we'll all be better for it in the end. Hopefully it'll work and Jack will start eating real food. No more Gogurt for breakfast, lunch and dinner with the occasional switch up of canned fruit. No more screaming when someone offers him a bite of chicken or banana or broccoli or pizza. Although, there could be a downside. He could start eating as much as Daphne and then we'll constantly be broke as our grocery bill will skyrocket!! Just kidding, that girl does have a huge appetite for only being 21 pounds though.
All in all, its for the best. I just have to remind myself of that. I just can't believe that in less than 2 weeks, my whole life is going to be upside down.
Monday, February 27, 2012
Tiny Update!
I got an email from KKI this morning! (Can I just say how much I LOVE our new case worker? I've never met her and she keeps me informed and I don't have to call her 800 times or email her to find out what's going on. She's keeps me informed every step of the way. Love it.)
Anyway, she officially faxed our formal request to Tricare on Friday so we should hear back sometime this week and get his start date.
Fingers crossed for good news! I'm praying he can start by the middle of the month. I really don't want him to have to spend his 3rd birthday in the hospital.
Anyway, just thought I'd share. Hopefully I'll have a bigger update later this week.
Anyway, she officially faxed our formal request to Tricare on Friday so we should hear back sometime this week and get his start date.
Fingers crossed for good news! I'm praying he can start by the middle of the month. I really don't want him to have to spend his 3rd birthday in the hospital.
Anyway, just thought I'd share. Hopefully I'll have a bigger update later this week.
Tuesday, February 21, 2012
Getting Closer
I checked my email today (after previously complaining on Facebook about never getting calls back from KKI) and what do you know? I had an email from the Feeding Clinic. All about Jack's upcoming admission. As it turns out, it had been sitting in my inbox since yesterday afternoon. Guess I need to check my email more, huh?
Anyway. Back to the important stuff. It didn't contain an official start date but there's a good reason why. Number one, they wanted to make sure that the timeline they presented us with worked for us. And number two, once we approve the timeline, they need to get TriCare's approval before we get the real date.
But we do have a timeline. MARCH. Next month. I'm terrified and happy and anxious and worried and a million other different emotions. I'm so happy that everything is coming together and he'll be going in the NEXT month. But I'll be sad to leave Daphne for that long and to only see my beautiful, little girl on the weekends.
The email went into a bit of detail about his life there. He'll have a roommate. So we'll be living with another kid and parent. Awkward but okay. He'll be allowed to leave the hospital a total of 8 hours each week. He can bring a few of his favorite toys (I have to put his name on them, Theodore is getting a special name tag sewn in him with my phone number) and I can take my Kindle. We'll go on a tour when we get there. We'll see his room, see the therapy rooms, the "preschool" room, the cafeteria where I'll eat, good places to take him on his down time stuff like that.
The first week we're there will mostly be intense evaluations that will shape his treatment. I'm guessing they're still hoping it'll only take 6 weeks for him? But I'm not sure. I'm hoping it'll only take 6 but he'll stay there as long as he needs to (and TriCare will let him) until he gets better.
All in all, I'm happy that we're finally moving forward. Right now I'm just overwhelmed. I can't wait for it to be finished and for our little boy to finally eat. I know most people don't get it but it's going to be crazy to see him eat something as simple as a banana for the first time.
Anyway, if you managed to make it through this jumble of an entry, I thank you. Perhaps I should wait a day before I update but I wanted to get the news out as soon as we knew.
Anyway. Back to the important stuff. It didn't contain an official start date but there's a good reason why. Number one, they wanted to make sure that the timeline they presented us with worked for us. And number two, once we approve the timeline, they need to get TriCare's approval before we get the real date.
But we do have a timeline. MARCH. Next month. I'm terrified and happy and anxious and worried and a million other different emotions. I'm so happy that everything is coming together and he'll be going in the NEXT month. But I'll be sad to leave Daphne for that long and to only see my beautiful, little girl on the weekends.
The email went into a bit of detail about his life there. He'll have a roommate. So we'll be living with another kid and parent. Awkward but okay. He'll be allowed to leave the hospital a total of 8 hours each week. He can bring a few of his favorite toys (I have to put his name on them, Theodore is getting a special name tag sewn in him with my phone number) and I can take my Kindle. We'll go on a tour when we get there. We'll see his room, see the therapy rooms, the "preschool" room, the cafeteria where I'll eat, good places to take him on his down time stuff like that.
The first week we're there will mostly be intense evaluations that will shape his treatment. I'm guessing they're still hoping it'll only take 6 weeks for him? But I'm not sure. I'm hoping it'll only take 6 but he'll stay there as long as he needs to (and TriCare will let him) until he gets better.
All in all, I'm happy that we're finally moving forward. Right now I'm just overwhelmed. I can't wait for it to be finished and for our little boy to finally eat. I know most people don't get it but it's going to be crazy to see him eat something as simple as a banana for the first time.
Anyway, if you managed to make it through this jumble of an entry, I thank you. Perhaps I should wait a day before I update but I wanted to get the news out as soon as we knew.
Thursday, February 2, 2012
Waiting on a phone call!
Jack had another appointment with Kennedy Krieger today. He did SO well. He climbed into the high chair with no fight, ate his ten bites of fruit with his spoon, no screaming or crying or thrashing and waited patiently for his timer to go off so he could get down. After he ate, the therapist watched him play in the play room for a few minutes. Every time she asked him to clean up and put his toys away before getting something else out, he did. He followed directions, he played calmly and was all around a different kid there than he was a month ago. (She thinks the class he's in twice a week through Infants and Toddlers is to thank.)
Because of how he was today, they are moving ahead with his Inpatient therapy. I'm overjoyed. I got the impression that last month's Outpatient "therapy" wasn't so much a therapy session as it was an evaluation to see how he'd handle the program. Obviously last month he'd failed. This month was much better.
So now we wait. I don't know when they'll call. She said soon. So hopefully it's real world soon and not KKI "soon."
Because of how he was today, they are moving ahead with his Inpatient therapy. I'm overjoyed. I got the impression that last month's Outpatient "therapy" wasn't so much a therapy session as it was an evaluation to see how he'd handle the program. Obviously last month he'd failed. This month was much better.
So now we wait. I don't know when they'll call. She said soon. So hopefully it's real world soon and not KKI "soon."
Saturday, January 21, 2012
2 years
It all started with an ear infection (so we think at least) and led us to where we are today. Waiting, still, to hear from Kennedy Krieger to hear about when he starts his treatment.
Its surreal to think that its been two years, especially since he's only 2 years and 8 months old. This has been a struggle for most of his short little life. It's been worse lately. He's been eating only graham crackers and Puffs. No yogurt which seemed to provide at least some nutritional value. After a two week long battle with terrible diaper rash, he doesn't seem to trust it right now. He'll sit in his chair for the appointed 15 minutes that KKI recommended and stare at his bowl without touching it for the entire 15 minutes. What can I say? He comes about his stubbornness honestly. So Puffs and graham crackers and Pediasure. That's all. It's hard to see him have such a limited diet. I worry about his health all the time. I know that even with Pediasure, he's not getting what he's supposed to.
It's hard to believe that in a few months that he could be eating more foods. I won't say like a normal kid because we don't know that. But more foods. I try to not get too hopeful because just in case it doesn't work, I don't want to get my hopes up too high, only to be utterly disappointed. Steve and I were talking about how crazy it would be to see him take a bite of chicken or a peanut butter and jelly sandwich or spaghetti or broccoli or anything, honestly. I don't know how I'll feel to see him eat. I can't wait. I want him to be a normal kid, to do normal things and have a normal life.
I wonder what would have happened if he wouldn't have gotten that ear infection. Would he have stopped eating anyway? Would this all have never happened?
I know life is too short to spend any great length of time of the "what ifs" but I think this one will always bother me. Regardless, I hope he starts KKI soon. I'm calling Monday to see if there is any update to his start date since his original date of "January" is almost over.
Its surreal to think that its been two years, especially since he's only 2 years and 8 months old. This has been a struggle for most of his short little life. It's been worse lately. He's been eating only graham crackers and Puffs. No yogurt which seemed to provide at least some nutritional value. After a two week long battle with terrible diaper rash, he doesn't seem to trust it right now. He'll sit in his chair for the appointed 15 minutes that KKI recommended and stare at his bowl without touching it for the entire 15 minutes. What can I say? He comes about his stubbornness honestly. So Puffs and graham crackers and Pediasure. That's all. It's hard to see him have such a limited diet. I worry about his health all the time. I know that even with Pediasure, he's not getting what he's supposed to.
It's hard to believe that in a few months that he could be eating more foods. I won't say like a normal kid because we don't know that. But more foods. I try to not get too hopeful because just in case it doesn't work, I don't want to get my hopes up too high, only to be utterly disappointed. Steve and I were talking about how crazy it would be to see him take a bite of chicken or a peanut butter and jelly sandwich or spaghetti or broccoli or anything, honestly. I don't know how I'll feel to see him eat. I can't wait. I want him to be a normal kid, to do normal things and have a normal life.
I wonder what would have happened if he wouldn't have gotten that ear infection. Would he have stopped eating anyway? Would this all have never happened?
I know life is too short to spend any great length of time of the "what ifs" but I think this one will always bother me. Regardless, I hope he starts KKI soon. I'm calling Monday to see if there is any update to his start date since his original date of "January" is almost over.
Tuesday, January 3, 2012
NEWS!
I am getting really bad about updating this. Honestly I think its because we really haven't (hadn't) heard much. Until recently.
I heard from KKI before Christmas. It's true but I didn't update because honestly, I wanted to pretend like he wasn't going and try to have a normal Christmas and New Year's. For the most part, it worked. The kids both had a great Christmas. Steve got both Christmas Eve and Christmas off and got to enjoy the time with us. Anyway, back to the news.
I had called KKI because I was so sick of sitting in limbo, I was trying to find Daphne daycare and I needed a better idea of when he was going to start to find her a place to go. When I first called they had said early January. Like the first week. So like right now. But she wanted to check on something for me and she'd get back to me. Apparently, what she had to check on was Outpatient Therapy.
They want him to do 3-4 sessions of Outpatient Therapy before he does In Patient. They're hoping that it will cut off some time that he'll have to be there. They'll focus on getting him to stay in his high chair and stuff like that. She said doing that in Outpatient, they won't have to focus on it during his first week of Inpatient and they'll be able to dive right in with "fixin" him.
Anyway, that's where we are. His first Outpatient session is tomorrow. Luckily Steve is off and can go with me since I know that its going to be very hard to watch.
As far as Inpatient goes, he should be starting this month. Probably after the 15th sometime, once he completes his 3-4 sessions of Outpatient and they feel like he's made the progress they want him too.
I heard from KKI before Christmas. It's true but I didn't update because honestly, I wanted to pretend like he wasn't going and try to have a normal Christmas and New Year's. For the most part, it worked. The kids both had a great Christmas. Steve got both Christmas Eve and Christmas off and got to enjoy the time with us. Anyway, back to the news.
I had called KKI because I was so sick of sitting in limbo, I was trying to find Daphne daycare and I needed a better idea of when he was going to start to find her a place to go. When I first called they had said early January. Like the first week. So like right now. But she wanted to check on something for me and she'd get back to me. Apparently, what she had to check on was Outpatient Therapy.
They want him to do 3-4 sessions of Outpatient Therapy before he does In Patient. They're hoping that it will cut off some time that he'll have to be there. They'll focus on getting him to stay in his high chair and stuff like that. She said doing that in Outpatient, they won't have to focus on it during his first week of Inpatient and they'll be able to dive right in with "fixin" him.
Anyway, that's where we are. His first Outpatient session is tomorrow. Luckily Steve is off and can go with me since I know that its going to be very hard to watch.
As far as Inpatient goes, he should be starting this month. Probably after the 15th sometime, once he completes his 3-4 sessions of Outpatient and they feel like he's made the progress they want him too.
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